Debs' Journey with Myeloma

New Blog Address

2011-06-24T12:10:00.000+01:00

Hi all,

Just to let you know that I have now moved to word press.

My new address is https://debsjourneywithmyeloma.wordpress.com/

I'm hoping this will allow people to sign up to get email updates, and also for me to do iphone updates....blogger was just very old fashioned!!

Give me some time though....need to do a few other bits first!
Debs x

Bone Marrow Biopsies, Peripheral Neuropathy and Wigs

2011-06-24T10:50:00.000+01:00

So, my appointment last week confirmed what I had expected. I am now off the velcade and awaiting transplant!!

The day started with a meeting with Faith who said that the PN was now significant enough that she felt it was better for me to come off it and move on to transplant. Nick and I were happy to agree as it has been so long coming - here's hoping we don't regret it! She talked us through a bit of the process and a few of our concerns, and more crucially (?!) she agreed to us going on holiday to Devon beforehand. I didn't think that we would even have to check, but they have been quite concerned in case I become ill....apparently my immune system will be pretty low after the chemo.

Bone Marrow Equipment

On from there to the Bone Marrow Biopsy. Yuck! However, the diazipam really did help....that and having a very good nurse who a) put me at ease, and b) was much more gentle. For the first time ever, I didn't squeeze Nick's hand until it was blue, so I think he was very grateful too! Don't get me wrong - I would hate you to think I wasn't a hero - it still hurt!!! I've attached a picture of the corkscrew that they use to perform the procedure.....barbaric is the only word I can think to use about it, but there is no other way. And because you can't numb the bone, all they can do is anaesthetise the skin around it....you just have to grin and bear the grating as they go into the bone and collect that bone marrow. Hopefully now I have the secret to a less painful process and I'll just have to test it when I have my next one 28 days after transplant.

We also asked to take a look round the ward I'd be on..it seems there are 2. One where you share a room with up to 3 other people, and one where you have your own room. Now the single room sounds remarkably appealing....ensuite, tv, computer with internet, what more could you want. Versus shared room: internet (not yet working), shared bathroom in the corridor, and having to share with 3 other people. I so wish that I had the choice but sadly I don't. The likelihood is I will be on the joint ward which I am sure will be fine when it comes to it. And there is a strong chance there, that I might make some friends which I suppose would be less likely if I am in a single room on a different ward.....I will keep searching for those positives, but that ensuite will be sorely missed!!!!

Since then, time has been busy, not sure what I've really been doing????!!!! I don't seem to have got hugely prepared and am trying to do some of that today. I think a lot of time has been spent talking to people, about me and about my mum's op. I've also been trying to see her more although Sam being sick put pay to that on Monday which was my dad's birthday. She is really worried about her operation and I wish I could take that worry away from her. I want, and need her to be positive. I know how hard that can be, but I am also so aware of how important that is to a good recuperation, and given that she goes in on Monday, I need her to be well and truly recuperated before I go in. I don't know if I could go in for mine if she wasn't doing well...I think I might have to postpone it.

I've also been suffering the last 2 or 3 days with even worse PN. Last night I lay there in bed with my feet and calves just throbbing....my toes felt like they were broken and the rest just hurt like I've never had them hurt before. I feel quite depressed today with it as it makes it so hard for me to walk...I look like an old lady. When I think that before I started treatment I had no side effects to all intent purposes, this has become quite rehabilitating and quite difficult to come to terms with. I find it so hard that I can't walk far, and that I am really pretty unable to take the kids anywhere now. I am still driving but not sure that I should be. I can't bear to stop though and to have to admit that it has got quite that bad. I suppose I keep thinking tomorrow it might be better. And I have SO SO much to do, that not being able to drive to town etc would make life so much more difficult. And part of me keeps just saying that perhaps I'm overreacting.....

1st Wig

1st Wig - front view

I wonder if another part of me feeling a bit more emotional is that I had a wig fitting yesterday. I didn't feel like I found the whole thing that hard but I've been really grumpy with Nick since. It wasn't a nice experience, but largely as I've been avoiding looking at how large I have got since I started treatment. But yesterday I had to sit in front of a mirror for 2 hours.

I'm not sure about the wigs at all. I have narrowed it down to the two I like the most but the one I think I like most isn't the one that Nick and the kids like. And that is important to me. I've attached them here....one is asymmetric and is very different to what I would normally choose as I would normally be worried about not being capable of styling it (not something I have to worry about!). The other is very much like my normal hair but with highlights. But I feel like it looks a little more middle aged. Part of me wants to be something different after all of this. But Rebecca was upset enough that a) it wasn't long and b) I'd only got a photo to show her and not taken her with me. So now I feel like I've lied to her and upset her. I know she's only 6 but it matters to me that she doesn't think I haven't done what I said. But I don't know quite when to get her to the place to view it....time is running out for us.

2nd Wig - like my current style

Time to Transplant

2011-06-13T14:37:00.001+01:00

18th July - I finally have a date.

I feel bad because everyday for the last week I have meant to post on here. And everyday has been as manic as anything and I haven't had a chance. I will try to remember what has happened!

It all started at my appointment on the 7th June. We discussed the peripheral neuropathy (from now onwards to be referred to as PN) in my legs and hands, and it turns out that they consider it quite severe due to it reaching my achy buttocks!! So we talked about it, and they gave me 3 options;
1. Take another week off - I really didn't want to hang around with this for no reason
2. Get going again with a once a week cycle at full dose
3. Forget the whole lot and go to transplant

In the end, we decided to try doing the full dose thing and see how it went. I have been on tablets to help with the PN and whilst these make me feel totally drugged at times, they seemed to be helping, so I was keen to give it a go. On the day, we agreed that if the PN got worse we would stop the treatment and go to transplant, and so on this basis, dates have now been set. Just in case people want to know, it will look like this;

14th June: Bone marrow biopsy
28th June: Meeting with Stem Cell Consultant and consent to be signed
1st July: Chemotherapy (done intravenously) - this will help to clean out the bone marrow
6th July: Self injection of growth cells for 5 days. These injections help me to create the new stem cells which will be harvested
11th July - 13th July: Stem Cell Harvest. Hopefully this will only take one day, but if I don't get enough from day one, they will ask me to go back the next day, and if necessary on the 13th. These stem cells will then be frozen until my transplant.
18th July: High dose chemotherapy (mephalan) - this cleans the bone marrow and zaps as much as possible. They basically give me as much chemo as my body can stand without dying as far as I understand it!!!
19th July (I think): Stem cells returned to me!

I think that I will have a few days of feeling ok, followed by potentially feeling like death warmed up for a few days. They recommend isolation although I am on a ward of 4 and am allowed immediate family to visit so long as they are not ill in any way, shape or form, and they don't bring flowers....no flowers for ages :-( They are normally the thing that cheers me up!!!

Anyway, so I go back tomorrow. I think they will stop the velcade as the PN has been quite bad for the last couple of days. I hope so now. I also go back for another bone marrow biopsy....this time I'm being given diazipan or whatever the drug is called that makes you happy! It is meant to relax me so hopefully it will!!! I hate BMB's with a passion and so does Nick as he normally walks out with a numb hand from where I've squeezed it when the screwdriver goes round!!!

At the moment I feel ok about the whole thing. That scares me that I'm not too worried. But I know it is the right thing to do, and the only thing that really gets me is how it will impact on my lovely family...mainly the kids. Hopefully I'll be back before they notice, but even Rebecca has been more attached to me recently so I worry that they will find it hard me being away so long. The next few weeks will be full of getting things straight....advice for anyone who is helping (e.g. my lovely sister who is flying over from Beijing to look after the kids so Nick can still work and come and see me), doing the paperwork (boring!) and doing those sentimental things like memory boxes, sorting out the photos and writing those horrid letters that I hope will never be seen.

What has made the whole thing a little harder is that my poor mum is quite ill. She was the person I talked about before, but I needed to wait until all our family knew to write anything specific. She was diagnosed with bowel cancer about 4 weeks ago and will have her op on the 27th June....I feel awful that I won't really be able to help her much. She was admitted to hospital on Thursday for 2 nights as she was anaemic and needed 5 units of blood in the end. She's still not feeling great and so the family are doing all we can to help her. It doesn't rain hey. Still, we will get through her and me, and I hope that perhaps this Christmas we can do a big family get together to celebrate and to pray for a better year next year for us all.

Better go.....................will try to write more often now though.........

Countdown to zero!

2011-05-27T19:04:00.000+01:00

So it was the end of cycle 3 meeting on Tuesday, but I thought I'd wait till now to update you as I don't get any figures until a few days aferwards.

So, where I was at 12, I have dropped down to 8....single figures, hurrah!!! They have said to me since the beginning that 'under 10' is what they aim for before they like to start on a transplant so I am really happy to finally have reached that....even if I plateau now, I am at a fairly good level. And if you consider that they were going to do a transplant (if I'd got randomised to that) when my paraprotein was at 27, this is SO SO much better!!

The other good news is that my other blood counts look a bit better too....no stem cell injections this cycle which suggests that perhaps my bone marrow is starting to produce the cells on its own again...the white and red cells, and my neutrophils....all good news as these are what compromise my immune system.

In terms of the neuropathy, they have now reduced my dose. Hopefully this won't impact on my speed of response, but it could do. They said that it was important to do this as whilst velcade doesn't normally cause long lasting neuropathy damage, it can do. So it is crucial not to have me at a stage that I can't cope with the pains, as if I was left with them I could be permanently disabled so to speak. It is a shame, but to be honest, I'm not sure I'd want to cope with much more in that area. My feet nearly always feel like they're burning off which isn't nice at all!. The calf pains have reduced the last couple of days, and I'm hoping it will stay like that. What I didn't ask is whether they would up my dose again if things get better but my counts slow down...there's a question for next time!

Anyway, half term starts today so no rest for the wicked, especially with two hospital appointments in the middle of it! Luckily my sister is around to help with the kids so that is good! Just have to work out how to rest in the middle of it all.

So in terms of timescales, for those who have been asking, we're still not much clearer! From what I can gather I will at least go through cycle 4 (this one) and cycle 5. That is another 5 weeks from now. If I got down to zero by then, I'd probably be looking at 4-8 weeks after that for the transplant....likely to be more like 8 weeks by the time they get the results of a bone marrow biopsy and get all the dates booked in.

However, they can give me up to 8 cycles of velcade and so if I had the extra 3 cycles, that would be an extra 9 weeks onto that timescale. So I think (!) that the latest I would have the transplant would be mid October, but it could be anytime between mid August and then depending on what happens with my paraproteins. Clear as mud?

Right, no sleep last night (tried to go without sleeping tablets...bad mistake mid steroids!) so am exhausted and going to chill out now.

Arrggghhhh

2011-05-18T12:25:00.001+01:00

So much has gone on this last week or so....it is like a disaster film really. Everywhere I turn I seem to get told bad news but perhaps that's just life as you get older. So, I'm going to try to stay positive with it all!!! Hurrah! So today's post is an update...not to be negative but just to give some facts.

This cycle has seen mixed side effects. Up till Saturday, I'd been doing really really well which is good news. Even the peripheral neuropathy seemed to have calmed down and all was looking great. Me being me though had wondered if that meant the drugs weren't doing their job. Well, that will teach me to worry about everything, as Saturday afternoon brought the start of the exhaustion again (probably partly to do with all the bad news I'd been hearing) and then by Monday, I had started getting quite bad PN in my feet and hands. Which has now nicely spread into my calves. It is a really weird sensation....the soles of my feet feel like they're on fire and my calves feel like I have shin splints in them. Peculiar! It's been pretty frustrating as it hurts a bit to walk downstairs and to crouch etc.....I know, I should just stop crouching and walking downstairs....lol!

Anyway, I've spoken to the hospital and it sounds like there may be some medication they can give me to help with the burning sensation but unless I travel down there I can't get it so I'm hoping it calms down over the next day and I don't need to do that....as much as anything I'm not sure how safe I am to be driving long distances - Nick would probably have to take the day off work to take me down there and I'd rather avoid that if I could. He's been a gem though and has taken the kids to school today so that I could just stay and chill at home...which I have done. Feet up and doing nothing....unheard of but very very blissful!!

Apologies

2011-05-10T11:51:00.001+01:00

Well I owe all of you who follow and comment on my blog a big apology. I should have updated this on Friday and I've neglected to do so.

So first things first. It looks like I got ahead of myself on the Tuesday...no change there but they've now explained how things have changed slightly which mean that the way I look at my figures now needs to change. Importantly though my paraprotein HAS gone down. From 15 to 12. Not huge but still a decrease which means that, at the moment, I am still responding to the velcade...big thing for me...almost bigger than the reduction in the pp. So what it means is that what I was using to predict my results, my total protein, is now normal. Basically where for normal people the paraprotein is 0, the total protein is normally between 60 and 72..mine is now down to 64 so I should no longer look at that as an indication of how the myeloma is responding as it is the same as anyone who doesn't have mm.

So it's good news really. The other bonus is that it'll stop me from trying to predict the results every 3 weeks. Now I'll just have to wait till the pp rests get back.

In again today and hopefully all is going fine. Seem to have a slightly low blood pressure so things have taken a bit longer. Thats because the velcade i'm on can cause hypertension so they have to be a little bit careful. Still will hopefully get home in time for the school run.

And again....bollocksy bollocks! (apologies for the second time to mum and dad)

2011-05-04T22:29:00.000+01:00

I was going to save writing again until my next check up on Friday when I would know some stuff for certain but this last week has just been so eventful, and I now feel I must have been such a bad person in a previous life (thank god I don't believe in reincarnation in reality!!) that I thought I'd share.

So it all started on the day of the Royal Wedding (and can I say what a lovely, lovely ceremony I thought that was....perfect and it seemed so personal for such a HUGE event). We had friends over for a bbq lunch with their kids and after having spent a number of hours eating in the garden, the men decided to take the children to the park for a quick run round. We were to join them 10 minutes later. 8 minutes later, they're back with Rebecca being carried. Bless the poor honey, she had fallen off the posts on the obstacle course, hit her eye on the next post and gashed it open. 1.5"!!!! So a couple of hours in A&E, glue and 10 butterfly stitches and we were home! I have to say she was very very brave and we were very proud of our beautiful, if bloody and bruised girl.

Anyway, all stayed quiet until my next check up yesterday at the Marsden. I'd been a bit nervous as the cheats test that we've been able to rely on until now had not looked good when I was there last 2 weeks ago. But since then, I'd felt pretty rubbish and so was hoping that the drugs were kicking in. Sadly, it looks less positive than that and my results look the same as they did 3 weeks ago at the last consultant appointment. I will find out for definite on Friday. I spent the rest of the day pretty miserable and couldn't stop crying at the hospital (which I have NEVER done - I want to be known as the strong, happy patient despite being young with kids!). And it was a long day - 6.5 hours as it was mega busy and then they forgot to send my prescription down! I'm not worried about where it leaves me now, as I am comfortable about them going ahead with the transplant which we think is the next stage. It's not like the velcade didn't work...it did...it brought me down from 27 to 14 which is great. And overall I've come down from 50. So while for some people 14 is a bad number, for me, it's a pretty good one.

What I'm sad about is that it potentially rules out 2 main drugs from my treatment regime in the future...unless they're prepared to keep swapping me between drugs on a fairly frequent basis, I just don't seem to respond for more than a couple of cycles at a go. So that scares me and the 'what if's' start coming up in my head.

'What if the transplant doesn't give me a good remission (2-3 years) and I end up having to consider the allo (sibling transplant with 30% mortality rate in first year)?'

'What if I don't respond to any of the drugs any better?'

'What if I can no longer look at 5-7 years as a life prognosis, but am looking at 2-3 or less'

And then there is the whole frustration of that I now have to do another 1-2 cycles on the velcade while they decide if I've definitely plateaud. I don't mind being on it and having the neuropathy or the exhaustion, or any of the side effects if I know it is working. But to do it for no reason at all, when I know the drugs aren't working, just seems rubbish, unfair and totally totally crap. In some ways I hope the neuropathy gets worse so that they take me off for that reason.

And then I slap myself and tell myself to stop doing the 'what if's' and the miserableness at as it doesn't help anyone. And today I felt better about it than yesterday. So perhaps giving myself permission to do that whole morbid, sad thing for a day isn't a bad thing....it gets it out of my system (for a while at least) and allows me to get on with life like you have to, and to be honest, like I want to. I am always much happier when I don't allow it to take over my life.

So today started off better. I still feel ok as the neuropathy and other side effects have died down since my week off, and hopefully won't kick in for a few more days at least. So I went shopping, caught up with people and was doing ok. Until I heard the news that someone very close to me in the family has had some test results that aren't ideal. I don't want to talk about it in great detail on here as it isn't my place, but I love them very much and don't want them to be going through all of the insecurity that I can truly sympathise with. I don't want them to have to go through it and I now understand how helpless they feel with me. And if that person is reading this, I will ALWAYS be here for you and will ALWAYS do what I can for you while I am.

And here's hoping and praying that all the worry will be for nothing.....for them and for me!!

So bollocksy bollocks (oh out of all the words I shouldn't use, I love those so much!!) really does sum up the last week or so....and there are about 3 other events that I haven't even mentioned. I think 2011 could be a tough year for us as a family...but we are strong and WILL get through it. We are all very lucky to have each other, and very lucky to have close friends too.

Anyway, will update again after Friday.....

Easter bunnies and all that malarky!

2011-04-25T00:22:00.001+01:00

I think I'm missing posting this by a matter of minutes in the end, but HAPPY EASTER to everyone!! What an Easter weekend and I have to say that so far it has been great.

Yesterday I think was my favourite day in a long long time. Just the 4 of us and that was who it was about. We started with a gorgeous picnic in Marlow park in beautiful sunshine. For once the kids had what they wanted to eat for the picnic (scary bow grateful a child then us for a packet of custard creams and a pear!!), played crazy golf, went on a bouncy castle and merry-go-round and played make believe!!

Then it was home to drop homemade eggs round to some of their friends, followed by playing in the sprinkler in the garden! God that bought back some great memories of being a kid and they loved it....esp sam!

Followed it all off with a great BBQ that they devoured and it couldn't have been a nicer day! Truly my happiest day in ages.

Then today we went off to the midlands for a day with the inlays and again a fantastic day. Our kids just love their nanny and granddad very much and their cousin Hugo so Easter egg hunts and playing up there was just fab for them.

I've been bit ropey today....exhausted despite sleeping lots in the day and horrid peripheral neuropathy that feels like my palms,feet and calves are burning the whole time, but somehow even that has seemed bearable when the time has been so nice.

Day on the house tomorrow...some painting and gardening I think...nay e a bit of fun for the kids too.....

Summer sunshine

2011-04-21T10:59:00.001+01:00

Well I thought that I'd use my time hooked up to my fluids to write an update. Seems a shame to be stuck inside on a drip when it us so sunny outside but hey ho - hopefully it's all for the right reasons. I have to have an hour of fluids everytime I have velcade....something about preventing sickness and dizziness I think they said.

One of my lovely sisters has helped us out today with it being the Easter hols. She came down from London with her kids and has taken the kids to the park while I get my treatment. I'm very much looking forward to catching up with them after and just hope I'm not too shattered as I'm not feeling too hot at the moment and we still have to drive home.

What was good today though was that she dropped me at the hospital which meant that the kids have seen it for the first time. Both had a quick toilet stop (!) but Rebecca also came u to the outpatients ward to say hello to some of the staff! Sam really didn't want to and so he went back to the car with his cousins but it's all just a way of hopefully getting them less worried about what's happening to me. Rebecca was very chuffed as one of the nurses gave her some biscuits....friend for life there!! And hopefully sam might like the idea more next time as it's him that is obviously more scared of the whole hospital thing. But a great start for them both and also means that the transplant won't be their first time of coming here.

Right, going to try to get 30minutes of shut eye now!!

Hurrah - some good news

2011-04-15T19:30:00.000+01:00

I was back at the Marsden today for my second dose on Cycle 2....and the great news is that my paraprotein has come down from 27 to 15!!! We are both over the moon about it as it means that things are definitely going in the right direction, and even if I stopped there, it would be SO SO much better than where I was before for transplant. The nurse said it gave her goosebumps when she saw how much I had dropped in the first cycle.

Anyway, it definitely makes up for the exhaustion (kicking in again today!) and the back pain which I seem to have developed today too. If it works, I don't care what I go through!

That's it for today....afraid I'm too tired to think about what else to tell!!

xx

Just another long day ....

2011-04-12T12:41:00.001+01:00

Well I'm at the hospital again. We got here nice and early in the hope that we could get out by lunchtime and enjoy some of the last sunshine in the local pub. I can't believe we haven't learnt our lesson...it's now 12.30, we've been here 3 hours and I havent even had my Zometa and fluids, let lone the velcade!!

Apparently something went funny with my blood so I had to redo them! I have seen the doctor though which is good. She seemed pleased that I've been well enough the last two days to clean our patio slabs and surprised that I've got the peripheral neuropathy already. It looks like my neutrophils are back down at 0.9 which is very low and means I have to self inject again tomorrow ....don't like stabbing myself with a needle but looks a necessity for me nowadays. I don't know my other results yet but will ask for them in a bit!

so at this rate it looks like we could be here for at least 2 more hours...hmmm that'll be a nice £10-£15 on hospital parking...I swear they delay us on purpose!!

Update:
Well, we finally got out 5.5 hours after we walked in, with a £12 parking ticket.....like you said below Sandy, it really isn't fair, but nevermind....can't do much about it. We're lucky that a lot of the time my sister will drop us in (she lives 5-10 minutes round the corner) and pick us up and that helps out loads.

Anyway, I managed to self inject myself no problems today so I no longer have any worries about doing that again in the future. The needle is really thin and you barely feel it go in, so it sounds much worse than it really is!! There has to be one benefit to the stone I've put on since I started treatment! The belly is perfect for injections....lol!

I got them to give me my total protein leveles too. Now, as I think I've said before, these are not clearly linked to paraprotein levels, but they seem to have been to date for me, and are often used as a cheats method of assessing what the paraprotein (pp) might do. Now when I saw my consultant she was getting me ready for the worst.....and I'm trying to stay that way. Her view was that whilst my pp's may go down a little, that they could just as easily stay the same at the end of this first cycle and that I shouldn't be disappointed if they did. They are at 27 at the moment. Now, (and don't get too excited here), if the total protein, little cheat that it is, was to suggest decreases similar to past experiences, I have a feeling that my pp may go down to under 20!!!! And with that I would be really pleased. REALLY REALLY pleased.

Just to clarify, we want my pp's to be as close to zero as possible by the time I have my transplant. And if possible we want that to happen within the next 4 cycles, so that I don't have to go through any further chemo before the transplant. As you know if you read this a lot, it really takes it out of me, being on the velcade, so if I can get down to zero in 4 cycles, it would be fantastic. If I don't, they may put me on up to another 4 cycles (each cycle is 3 weeks) until I either get to zero, or show a plateau. So we will see, but the perfect scenario in my head, as much as the transplant will be tough, is to get on with it as soon as possible!!
So today has been a long day, but a pretty good day, so long as my thoughts on my pp's are correct. Tomorrow I get my kiddies back who have stayed with the grandparents since Saturday night, and I have to say, I can't wait. I have missed them loads and whilst it has nice to have some peace and quiet, I do feel so blessed to have them both. I may not be saying that by the end of the Easter holidays, but for now......bring them home!!!

Lifting moods

2011-04-06T11:58:00.000+01:00

So it's been a while since I last wrote.

To be totally honest, I've found the last week or so quite tough. Not that I've felt particularly worse, but more because I'm going through a blip where I am so tired from the side effects, and so tired of not feeling my usual active self, that I am just a bit fed up of it all. The good thing is I know it won't last, but it doesn't make it nice while I'm going through it.

I like to think that I've handled this damned diagnosis pretty well since it all kicked off in 2009. Without even trying it has seemed to be fairly natural not to blame other people, wonder 'Why me?' or get cross about the whole thing. I almost feel like sometimes friends and family expect me to be showing those feelings, and with some friends, I think they are disappointed not to see me collapse in a heap in the floor....maybe because that's what they would do.

But this week, I've felt a bit like I'm not quite sure how I face this for my (ok yes, shortened) lifespan! It's wierd. I suppose at the beginning, and once you get over the initial diagnosis and the shock of it all, it almost becomes a 'novelty' thing. Hmmm, should I admit to that one? I certainly felt a little like that while I was training and raising money for my 3 Peaks last year. It felt a bit like being pregnant. But now, that novelty value is well and truly wearing off, and I just wish I could go out without worrying about how I might feel afterwards, whether I will have overdone things for the next day, whether I'm going to get the same old same old questions from people who care. Maybe post transplant, that will happen....for a while at least. I think I might have to use that as the opportunity to cancel MM as a topic of conversation! Maybe if I get remission I can ban it from conversation....hmmm, thinking it's unlikely as that's probably when I'll feel back up to fundraising! Oh well. Maybe I'll feel differently by then.

So, back to now....it's a beautiful sunny day today, after a day of rain yesterday. So I've been in the garden chopping down branches from our neighbours tree (grrrrrrr.....just drops leaves etc all year round!) and have even planted a couple of things! That's probably my lot for today, and I hope I haven't done too much, but I really enjoyed it and it was so warm out there even at 10am that it really lifted my spirits!

One of my lovely best friends is coming over with her gorgeous 5 month old anytime now so that will be nice...time to just catch up and I'll try not to moan too much at her! Hopefully we can sit in the garden and chill out until school pick up :-)

Feeling SO much better - Day 10

2011-03-31T20:51:00.000+01:00

Wow, the difference a few days can make.....and here's hoping I'm not tempting fate by writing this!

Got out walking again today for the first time in a week and I feel so much better for it. Much slower than normal as I was trying to take it easy....Nick is away and I need to be sure not to wipe myself out for the kids. But I just love it.....my iphone and me and the world! Oh and the snail that made me think of myself!

Anyway, I'm back to the Marsden tomorrow for the last of my Velcade injections in this cycle...then I get a week off the lovely journey and hopefully won't be as wiped out as people suggest that you can be. Hopefully I'll be in and out as quickly as last week, but won't feel as rubbish when I get home! At least this time, the inlaws are here to help out till Nick gets back so if I need to rest, I can.......assuming I can let them take over....not so good at that one with them for some reason.

They're staying till Saturday lunch (an early mothering sunday lunch celebration) and then we have till Sunday afternoon just the 4 of us before Nick is off on his travels....again, poor bloke! Still we're nearly at the end of the travelling and hopefully then things will get a little easier on all of us.

Expectations - Day 8 VCD

2011-03-29T19:53:00.000+01:00

I've read a lot of blogs since I was first diagnosed. And I'm still not quite sure what the point of them is.....despite writing this one. I'm not even quite sure why I write this anymore....whether it is for me, for other people who want to know what is going on without hassling, for people who have been diagnosed and need to hear how it is......

Perhaps it just doesn't matter. I started writing it because I wanted a diary of what I felt and how this cancer was affecting me, but I'm not sure it has quite ended up like that. It is hard to be 100% honest about your feelings when you know that some of the people who read it would find that really difficult. And to be honest, I'm not the most 'eloquent' of writers!!! I've read some really inspiring blogs recently and for a brief moment they made me question whether I should carry on writing this. Just who exactly am I helping!!!

But I'm afraid I am going to carry on with it....after all, if you don't like the content, you can go and read the inspiring blogs and I can write to myself :-)

Anyway, the good news is that after a major blip on Sunday evening and Monday, I feel a lot more positive today. I slept a little better last night.....still waking every 20 minutes or so, but it felt a bit more restful and a little less stressed! Wierdly I did dream all night about the upcoming transplant...ironically linked to our Occupational Health department at work, the family and all sorts of strange things. But I woke up feeling slightly more refreshed and ready to face the world. Good really as Nick has gone off to Italy today till tomorrow night (back and then off on Thursday to Spain!).

Despite Rebecca choosing today to have her blip with life and with Nick going away (bless her), we all got off to school ok and I made the hospital. I was out in about 3 hours and in that time actually managed to dose for an hour or so which was a huge help to the 90 minute drive home. Still shattered now and will be off to bed in the next half hour or so, but I managed and there were no tears....always a positive! Not even the cost of the hospital parking made me cry today!

I am really loathed to listen to much to what other patients experience are with Velcade as I don't want to give myself an excuse to give up on doing stuff and life for the next 3 months....but the more I have heard, the more I think that perhaps it might be a bit of a write-off and that the sooner I give in to that and accept it, the happier I will be with it. Someone wrote to me today and explained what a powerful combination of drugs I was on. They know a lot and said that it was unlikely I'd be able to do a lot whilst on it. And scarily, whilst on revlimid, my drug free week was a great week, it sounds like on Velcade, you are totally wiped out on your drug free week......god knows what that will look like!!! I can't really imagine being more wiped out than I have been at times this week.

So my new plan is to lower my expectations.....hmmm, yeah right! I still want to go for a walk tomorrow, make fish mornay for the kids and a loaf of bread......oh yes and there's a bit of ironing and swimming after school. BUT, somehow, I feel a bit like if I don't manage one or two of those things it won't be because I'm a failure......and if I can stand by that thought, then I've moved on somewhere over this first week of treatment.

Bloody knackered

2011-03-27T21:24:00.000+01:00

Got it wrong about today not impacting me!

Managed the day at the christening pretty well I think.....didn't really want anyone to think I was doing anything other than coping!! But got into the car and was shattered and asleep within 20 minutes! And then came home and was asleep for another 2 hours! Just trying to sit with Nick for an hour or so that he doesn't feel totally neglected!

I'm feeling quite frustrated about how the treatment is affecting me even though I know it is still early days here. I have put on nearly a stone since I started on the Revlimid back in November, and only in the last week or so have I felt like I've been making a start on changing this. I've walked 3 times this last week and while I find it a little tiring, it has really invigorated me doing it. But the problem is that by doing that, I have no energy for anything else. How can I do things like that, if it means I struggle to pick up the kids, make their tea and generally get on with normal life.

I feel a bit pulled from pillar to post with it all. I want to be totally selfish and if it was only Nick and I, I probably would be. But it isn't and that is tough. I know there is lots to do like photo albums and scrapbooks that don't have to take a lot of energy...but part of this is about me getting me feeling happy about myself and at the moment I dislike the way I have allowed myself to fall to pot! Stupid I know, and this isn't a bid for comments telling me it doesn't matter - it does to me!

I know I'll get there, and I'm hoping I'll get more used to how this treatment is going to affect me as time goes on. And hopefully with that will come the balance I so desperately want to get to!

Positive thoughts, positive thoughts, positive thoughts!!

Nearly a week on - day 6 VCD

2011-03-27T10:13:00.000+01:00

Well it's been a pretty good start to the first cycle. Tiredness is the main issue as I'm not sleeping brilliantly even with the aid of sleeping tablets. And I'm only taking those on nights of desperation!
My worst night so far was on Friday. I'd been to the Marsden for my second velcade dose and driven home....all good really but by the time I'd got home i was dead to the world! And very very emotional! Lucky my boy was at a friends for tea and our neighbour had got Rebecca. She bought her home, saw the state of me and kept her for tea until nick got home...a real life saver.
Yesterday was better after a slightly better sleep and I even got out working a bit inthe garden. and made bread.
Anyway this morning we've had an early start to go to the christening of one of nicks cousins kids....hopefully won't flake me out totally!

It's all begun - VCD Day 2

2011-03-23T09:51:00.000Z

So I started on velcade (with dex and cyclo) yesterday for at least 4 cycles and feel much happier now it's . And hopefully the velcade will knock the MM to the ground!

So what is velcade? Apaprently it is a protesome inhibitor which can cause the cancer cells to die and stop it from growing....here's hoping!
It involves about a 4 hour trip in the hospital. You give blood and have to wait for that to come back before the prescription can go to pharmacy (the drug has a short half life and s v expensive, so they have to know you've arrived and are fit to take it). Then I was hooked up to fluids for an hour. And then we just had to wait for ages for it to come back from the pharmacy. It finally came at about 2.30pm and apparently it normally doesn't come back until 1pm till 2pm. It will be a bit of a bummer with school pick up (we live an hour and a half from the hospital!) but we'll manage. Anyway, all that for a 3 second intravenous injection...lol!

I have a 3 week cycle where I have to go in on the Tuesday and Friday of the first two weeks, and then I have a week off. And it is taken with Dexamethasone (steroid) and Cyclophosphomide (chemo). The expected side effects are v similar to before but Peripheral neuropathy is more common and can cause tingling/numbness in fingers and toes, pains in the calves and sole of feet, diahorrea or constipation and fainting. Oh and the usual sickness and tiredness. I'm hoping not to have any/ many of them! The only one I'd quite like is the loss of appetite.....might help get rid of the stone I've put on!!!

Anyway, nearly 24 hours on, and the side effect so far is that the lack of sleep has kicked back in from the dex. Obviously the revlimid helped me last time and stopped the problems when I took it in the evening...no such luck this time, and I wake every 20 mins to hour! Oh well, hopefully only for 3 months.

Signing off as I go off for a 2 hour walk to try to pretend none of this is happening :-)

Life in the hands of a computer!!

2011-03-21T12:14:00.000Z

What a nervous morning! First of all I was waiting and waiting until I felt I could call the registrar at the hospital to find out about the outcome of their meeting. Finally at nearly 11am I called her and she told me that they had decided the bone marrow biopsy wasn't as bad as they had first thought and that I had achieved a 15% remission, therefore classed as a partial remission, and so would go through to the randomisation.

So then I called my trial nurse, who is lovely too (aren't they all at the Marsden!), to ask if she had done that, and whether it would be possible to call me once she had. She was so great, and had been just about to do the randomisation anyway, so told me that she would call me back once the results had come back...apparently they have to call up, and then the results are faxed to them!

So the outcome is........drum roll......VELCADE! :-)

I'm pretty happy about that as I think I would have always looked back otherwise if the transplant hadn't worked well and wondered 'what if...' So remind me of that when I'm moaning about the side effects of the velcade! Also, life gets easier for Nick at work over the summer months, so that means he will be more relaxed about it all - another positive!

Anyway, must go for now....will maybe update this later with what Velcade will mean....or I might wait till after I start it at the hospital tomorrow!

Still don't know......

2011-03-19T20:45:00.000Z

Friday was a remarkably busy day and so I'm afraid that a coffee morning at mine, followed by the kids having friends over for tea (didn't leave till 8.30pm :-) ) has meant that I haven't got round to putting my results up.

To be honest, I'm not quite sure what they mean anyway. My paraprotein has dropped from 27 to 24 - good news. But it looks like the trephine that I had been waiting for from my bone marrow doesn't look so positive and seems to suggest that it is still at 50%. Only 10% down from what it was when I started the treatment. I had convinced myself that my bone marrow was going to be good so it was a bit of a blow to hear that. The registrar did say that there was a note attached saying that it was very patchy and that this could mean that the figure was higher than it should be, but I don't quite get that. Hopefully all will be explained at our next meeting on Tuesday.

All the consultants at the hospital, including Gareth Morgan and Faith Davies, will be discussing my case at their MDT (multi-disciplinary team meeting) on Monday so I have agreed that if I call the registrar later in the day, that she will let me know what their thoughts and decisions are. And hopefully, if it isn't to put me back on revlimid (which I'm doubting if my bone marrow is so rubbish), they will be able to tell me if I have been picked for velcade or transplant and we can start moving on with the treatment.

I have to say, I don't really care anymore what I get given. I just want a decision. I have really struggled this week and am more uptight than I've been in a long time. My shoulders are really tense, and I have developed a back pain that I used to get when I worked in London and was stressed with my job - I haven't had it for about 9 or 10 years but it used to feel like I had a fist stuck in my shoulder blades. Not pleasant. Anyway, hopefully a decision tomorrow and some detail on Tuesday will help that all to go away.

We have the Christening of one of my best friends little girls tomorrow so hopefully the weather will stay sunny and it will all take my mind of this nonsense while we enjoy it!

on......and on....and on......The end of cycle 4

2011-03-15T20:56:00.000Z

Off to the Marsden with my big sister today (Nick and I decided he needed to get to work and make sure they let him keep his job!) for what we thought would be a relatively quick appointment. Oh why haven't we learnt our lesson???? In at 10am and out at just before 2pm....urrrgggghhhh!!!

Anyway, 2.5 hours after giving blood and having my zometa (which is a bisphosphonate to strengthen the bones) we finally got in to see one of the registrars....now I sort of wondered if this was a sign as I was pretty sure that if there was anything major to be told, or anything that was going to be changed on that day, that I would have been told to see my consultant not the registrar. Ominous from the start!

So results: Well, my hb (haemoglobin has dropped down to 10.8 again but nothing too worrying, and my total protein has gone down too. Now it isn't a straightforward link, and you can't rely on it, but seeing your total protein drop can often be an indicator that your paraprotein (pp) has also dropped. And to date, this has been the case for me. Now, I was slightly surprised at this, and therefore forgot to ask the obvious question - 'if when I get my paraprotein result back it has dropped by around 5 again (what I expect it to drop by looking at previous results) does that mean I haven't plateau'd after all, and does that mean that I would stay on the revlimid?' Scenario 1 - question unanswered! (Or not even asked!)

So that was the pp level and hb. Now to the bone marrow biopsy. When they do this, they do two bits; a 'trephine' and an 'aspirate'. Don't hold me to this description, but I think that the trephine is where they actually dig into the boney bit of the bone marrow, and the aspirate is where they suck up the more liquid bit. Apparently it is easier for the myeloma cells to avoid capture in the latter, but my results for that were back and the great news is that it hardly showed any myeloma cells. The less positive news is that it is the trephine that is more reliable, and they are expecting that with my paraprotein level still being above 20 (and it probably will be even with a drop) that the trephine will show a higher level of myeloma cells. BUT, I think they might be wrong, Dr Gascoyne that I am!!! lol!! But seriously, when I was first diagnosed, I had a pp of 32 and my bone marrow was just under 10%. So why this couldn't be the case now, I don't know. And if it is under 10%, they would normally be prepared to do a transplant and see it as really positive.

Now, the registrar seemed to suggest that if both the bone marrow biopsies came back really low, that they would be concerned why this was the case, when I still had a high pp. She sort of wouldn't answer what would happen next, so whether they would do other tests, I don't know. The only thing she did say is that sometimes, it is because someone's myeloma is in patches, and that they may have missed it when they did the biopsy. Which could mean another biopsy next week I presume :-( Not nice as I hate them.

So scenario 2 is that if my bone marrow has dropped and my pp has dropped but still only enough to class as 'no response, I would go straight onto 4 cycles of a drug called Velcade (12 weeks in total)

And scenario 3 is that if my bone marrow and pp have dropped enough to class me as having had a 'partial response' I would go into what I have described before which is a randomisation as to whether I have Velcade or Transplant.

So 4 hours later, and sadly we're not much further on with the whole thing. In fact, the concept of staying on revlimid has come back into the equation. I have to say that it's hard to know what I would like now. The later we can do the transplant, the later it is that the clock starts ticking again, and hopefully every month means an extra month for me in total. BUT, the idea of going back onto the revlimid and it potentially not working while I'm on it doesn't appeal - why would it? The idea of being on drugs that make you feel rubbish but don't lower your levels isn't great! And the idea of being on velcade? Well I don't mind that one so much.

I am a bit happier as the registrar explained to me that when they harvest your stem cells, the myeloma ones don't tend to go into the machine and so that is why it doesn't matter so much if my pp is still highish when I go into transplant. So once again, the transplant has become less stressful as a concept to me.

The other thing today was that the registrar was actually a pediatrician doing some work on myeloma. It is the first time I have been asked about the children and how they are coping. And what was nice was that she said she would go away and look into the support the hospital could offer/ point us to that might help us in telling the kids more about what is happening both now and in the future. At the moment they are too young to know too much. They certainly don't know about the fact I am more than likely to die from this. But one day they will do, and we don't ever want them to feel we have lied to them or misled them with what we have told them before. It's been hard this last week and I've thought about them a lot and how it will affect their childhood. I've cried quite a lot too with it all. They don't deserve any of this - none of us do, but especially not them. A friend has had a hard time with one of her children too and that has really brought it home to me how this awful disease causes so much pain to everyone.

But that is a sad note, and hopefully now we have started the process to get some help with how to deal with that.

Anyway must go....it's been a long and exhausting day. Take care all x

Just loving weekends....

2011-03-06T23:04:00.000Z

I'm writing this on my iPhone so it won't be a long one! I just wanted to write just how much I love my family. I doubt I am verbal enough about what a rock Nick is to me and this weekend he has just made me remember. He hasn't particularly done anything, but he has just been there, has done lovely things with the kids, and has allowed me the luxury of a lovely weekend with no pressure....all good :-) The kids have had a fab time, Sam had his first time at football, we treated them at the toyshop, they went to the park, did loads of arty stuff and then we watched the film of Peter Pan as a family (well I fell asleep but we were all together which is rare!). So on a Sunday night I'm already looking forward to next weekend!!

Update on Treatment options

2011-03-02T21:14:00.000Z

So, we went to the Marsden again yesterday to speak to our lovely lovely consultant and I have to say, I have walked out a little bit more confident, if a bit sorer (will explain in a bit!)

Faith was very keen to say to us that she doesn't see my response as a failed response, but more as one that whilst not as good as it could have been, has still been a response nonetheless. We talked lots about where my 'standard' paraprotein might be, and that it may be generally higher than other people anyway, and that if I had a bone marrow biopsy (bmb) that my bone marrow could have reverted back to under 10% despite my paraprotein still being relatively high at 28.

We then talked about the options moving forwards. She is fairly confident that we have now seen a plateau in my results, but we need to wait till the end of this cycle so won't get the results of that till around the 22nd March. Given this, I would then get randomised onto either velcade or transplant. Now obviously, the transplant was something I was really nervous about having heard bits and pieces about it being better to be close to complete remission before you go in for it. She has said that there is no concrete proof on this, but that this is why they have added the velcade option to the Myeloma XI trial to see if there is any indication that a better initial remission helps post transplant.

However, she seems to truly believe that it is the 3 months post transplant bmb that is the important decider in how I will respond to treatment, and was very keen to say that it would be fine to use the velcade at that point instead, if I wasn't responding well to the transplant either.

So we feel much better about it as an option. We also asked her about what would happen if we were uncomfortable about the option that came out of the randomisation, i.e if I got put to transplant but didn't want to go ahead. She felt that it would still be dependent on the results of the bmb and my paraprotein but that the reality was probably that she would still be moving down the transplant route! So it seems like there would be nothing to be gained by coming off the trial.

I only cried once in the whole process (!!) and she reiterated to us that she wasn't worried at all about my results, but more about how I was with the whole thing. Normally, she would have waited till my next appointment on the 15th to do the BMB but she asked if we wanted to do it yesterday so that the results would be back around the same time as my paraprotein on the 22nd, which would allow us to start making the decisions. We pretty quickly decided to do it and off I went for the barbaric process of having a cork screw stuck in my back!!! I hate it so much and it hurts terribly, but it is over now for another 4 or 5 months I hope!!

So now we have to wait until either the 15th / 22nd to find out whether I will end up on velcade or on the transplant route, but at least it is only another 3 weeks.

We also found out whilst waiting for the BMB that they have provisionally booked me in for a stem cell harvest on the 11th and 13th April...scary as that would suggest a transplant around the end of April/ beginning of May but at least now we can start planning in case that goes ahead. And I feel much better being able to plan....control freak that I am!!

And to tie in pretty nicely, work have suggested that they can only commit to work for me till the end of March. So perhaps it all ties in pretty nicely and things are just meant to be.

I just want to say thank you to all of you at this point who have been following this, commenting and generally supporting us through all of this, either openly or via my family. We have really learnt who our friends are and who are there for us whatever, and that means so much to us. We have made many new friends (me especially) and we really value your help through it all. It is such a tough thing to go through at times, but friendship makes it so much easier. So thanks!

How Ironic?

2011-02-28T18:22:00.000Z

Isn't it just ironic that the song that my kids keep putting on the ipod (after Barbie Girl) is Fame's 'I'm going to live for ever'!!

Last week it set me off in tears everytime I heard it, so it's a good sign that this week I can hear it without feeling sorry for myself!!

Off to the Marsden tomorrow to meet with my lovely lady to hear what will happen moving onwards. We're expecting for me to get moved onto Velcade or have to come off the trial to go onto different drugs, but we don't know what the timescales look like for that really. Lots of questions for them about what it means for me that the Revlimid didn't work, effect on life prognosis etc, as well as what happens if the velcade doesn't work next....though I'm not sure I want the answer on that one as it won't be good news if I have cut out 2 of the major drugs!!!

Anyway, I've had a much more positive weekend and start to the week so hopefully that will be backed up tomorrow with some good news while I'm on a roll.....

Impressive at the Marsden

2011-02-22T13:49:00.000Z

Following yesterday's down day, I'm feeling a little more perky today. The kids help no end....you just can't sit around moping with them and that is so good for me at times as I think I would otherwise!!

Yesterday was so hard though. I didn't seem to be able to stop crying all day. And then interspersed with that would be the thought of throwing a glass across the room!!! Nick asked if I could make sure he wasn't around if I did that! It all just seemed so unfair and so wrong. Why had I gone through 4 months of tiredness, sickness, and feeling rubbish to get this sort of result. I just felt exhausted and like I didn't quite know how to keep going with it all. Silly really. My lovely sister sent me a bouquet of flowers all the way from Beijing (well I'm thinking it was probably from here somewhere, but you know what I mean!) and even those made me burst into tears.

But today has been a little better. I cancelled my plans for the day and the kids and I have just been having a nice day doing jigsaws, playing games and reading. I'm not quite ready to be talking about it all with people at the moment, so it is so nice to just be with people who don't get it...bless the little lovelies!!!

Nick and I wrote to the Marsden last night to see if they could give us an indication of what they thought of the figures. Funnily, this morning, I got a copy of the letter that they had sent my GP after last weeks appointment, and that made me realise even more that it was likely they'd pull me off the revlimid. By 10am this morning, I'd had a response from them saying that they agreed that it looked like I had only achieved a minimum response to the Revlimid and that I would probably be put through to the next part of the trial with the randomisation to velcade/ transplant. They have arranged an appointment to see me next Tuesday which is great. They also acknowledged my concerns at going straight to transplant at this stage and that was something that was worrying me as I thought they may bully me into it. Hopefully if that is what I get chosen to do, they will help me with the right decision as I would imagine I'd have to come off the Myeloma XI trial.

I was so impressed that they came back to me so fast. It makes you feel like you are vaguely important and that it isn't all about people through the door. So off we go again next week. Here's hoping Nick's work are ok about all the time he takes off to come with me. I'm a bit nervous about that, but he really wants to be with me for the appointments now (understandable!) so hopefully his work will be ok with him.

So, next step could well be velcade for me....I wonder what that will be like....arrgghh....must stop getting ahead of myself!

Cycle 4: Day 6 - Where is it all going?

2011-02-21T15:38:00.000Z

God I'm feeling miserable today. No apologies. So sorry if you're looking here for any inspiration or positivity!!!

I called up the hospital to see whether they had my paraprotein results back in, and sadly they did. They've gone up from 27 to 28. Now I know this is only a rise of 1, and I know lots of people will tell me it could be a blip, or blah, blah, blah, but having talked to the consultant last week, I am pretty convinced that she will see this as a fairly strong indication that I have stopped responding to the Revlimid. Gutted to say the least.

It's been a weird week anyway since I went in on the 15th. I almost feel like I knew this was coming, but it hasn't made it any easier.

So now I'm not quite sure where I stand with it all, especially being on the trial. I believe that I will be classed as having had a partial response as overall I've gone from 50 to 28. I think that means that now, I will be randomised to either go onto Velcade for a while, or to go straight to transplant. Now I need to do some research, but my understanding is that if you have a transplant without being properly in remission (i.e. without my paraprotein and bone marrow having reduced enough) that I wouldn't get as long a response from that transplant. So I can't see myself staying on the trial if I got picked for that option. Every month counts so much to me with Nick and the kids, and I can't even contemplate shortening that for the sake of a trial.

I think the hard thing today is not knowing where we are going, and how long it will be before I do know. My nurse specialist is on half term this week so there is no-one to ask what happens now? I don't know if they'll keep me on the CRD until the end of this cycle, suggest I go and see them early and change the drugs, or what. So I think Nick and I will sit down tonight, talk it through and maybe draft up an email with all of our questions. I'm not sure I can wait for 3 weeks with this hanging over my head....not happily anyway.

It's strange really. When this all kicked off, I think I just believed that being young and healthy, that I would automatically respond to the Revlimid and that all would go well and that it would all be over by the summer. I never really thought of myself not responding. Goes to show that you can't take anything for granted.

Damn Myeloma....I hate it.

Bring on Cycle 4 - CRD

2011-02-15T21:04:00.000Z

So today was my latest appointment at the Marsden.

It's been a bit of a strange one as I haven't really come out of it much the wiser. Everything is ok and they don't seem to be worried about any of my figures or anything....didn't even ask to do my blood pressure etc this time which is unusual. Normally how it works is that they have all my normal figures (including my total protein) but I have to wait a week for my paraprotein result which is the key one we're following at the moment.

Today, they had all my normal figures APART from the protein. Now this just seems so unfair....I mean....I'd spent all week working on the premise I could use it to cheat and guess where my paraprotein was going to come out. And now I'm actually going to have to wait.....It's Not Fair as my daughter would say! And what is worse is that my nurse specialist is on half term next week so where I can normally get her to email it through fairly promptly, I bet it isn't so easy to get it without her there.

So, what have I learnt today. Well, it looks likely that unless there is an absolute miracle this time (and next), that I will at least be going on to have one more cycle of chemo with the Revlimid. At the same time they see me next month, they will do the dreaded Bone Marrow Biopsy....oh how I can't wait for someone to stick that huge needle in my back!!! However, this will only happen if my paraprotein is still dropping.

If my paraprotein has only dropped by one or two this month, they will probably deem me as not responding to treatment (or as having had a partial response) in which case, they will take me off the Revlimid and do a randomisation to see whether (on the trial) I either still go straight to transplant, or whether I have to start on a drug called Velcade. It is unlikely in these circumstances that they would put me through anymore on Revlimid. I'm not sure which would be the worst deal on this, as to go straight to tranpslant without being in full remission, in some fields, would suggest I'll get less time in remission from the transplant.....and that isn't really something I even want to consider. BUT, to have revlimid will require me to go into hospital two to four times a week and obviously with 2 young kiddies and a husband in a new job, that won't be easy to juggle! And god only knows what the side effects will be of that.

However, that isn't the only option, if my paraprotein drops by around 8-10 this time, they might just get me to go through another round or two on the CRD (revlimid treatment). That would have the downside of the transplant not being till the summer but the benefit of staying with something I know and that I can take at home.

Confused??? I am!!!

So first bit of real news will be next week when I get the paraprotein result and spend the next 3 weeks worrying about what it will mean for me!!! And then I'll have to wait until the next appointment to see what the reality is.

We also had a chat with them about being on Revlimid. There is lots in the press at the moment about the drug and some of the trials that have currently been done. The trials are where it is used as Maintenance therapy (where at present I have it as Induction therapy) and there is some suggestion that it may have led to a higher incidence of secondary cancers where people have been left on it for 2+years. We wanted to talk to them about it and I have to say, they were great. They didn't treat us like we were mad to be interested in what it meant, but answered all our questions and sort of said what we'd thought which is that it is still really early days and there is lots more to be questioned before they know the reality of it all.

At the end of the day all of us with MM will have to make decisions as we go through. Revlimid is considered a wonder drug in many ways, and if it allows me to have more years disease free with my children, perhaps it would be worth secondaries. Though I am conscious that I am unlikely to say that at the time. But who knows, without it, I possibly wouldn't get so many years with them and that is too sad to come off it for something that isn't truly known. I think at the moment lots of the consultants believe that the benefits outweigh the issues.

It's so hard with MM....it rarely leaves your head, although I've got better with that as time has gone on. But it is always there making you consider things in a way you never did before. Recently I've been thinking about the kids lots. I feel so sad that they may not have me around as they grow up and go through their most vunerable years as teenagers. Ok, before you say it, maybe I'll be lucky if I miss that one (!) and maybe it will be Nick's penance (lol!) but as awful a period as I am sure it is for parents, I will be so grateful if I get to see it through till they leave home. Anyway, not sure why I'm writing about this now apart from it has recently snuck back into my head after months of not really thinking about it. And that's what this blog is meant to be about after all....my feelings and thoughts.

Oh yes, got flowers today....thought they might possibly be from nick....they were beautiful. They were from John Lewis apologising for our dishwasher escapades!!!! Better flowers from them than nothing from anyone :-)

Cycle 3, Day 23

2011-02-10T22:30:00.000Z

Ok well I promised a more upbeat entry this time.....and I might just fail!!! Although I will try to cheer it up as I go along.

It's been a tough week or so since I last wrote. For me anyway. I know that in comparison to what lots of other Myeloma patients go through, what I have to deal with isn't major, but I only know what I know. And I've found it hard the last week.

I've suffered from the most awful taste in my mouth for about the last 10 days....it has only just gone since I stopped the Revlimid on Tuesday. I've had a horrid taste on and off over the 3 cycles but this was something else. It sort of tasted like when you get dandelion juice from the stems on your fingers and then touch your mouth. Sort of bitter and horrid. It has just really got me down as it has made me eat even more than before trying to get rid of the taste, and of course that has had the worst effect of making me feel pretty low about the weight I've put on. Along with that, I've been remarkably exhausted and not really had the energy to do anything except get the kids to school and do my paid work. By the evenings, I've been banjaxed!

But, on the positive side, I have come out of my low and decided yesterday that I needed to stop moping around about it and start doing something. It was helped by the fact that I stopped feeling so tired and awful, but I got the Wii Fit out of the box that had stayed unopen since I got it for Christmas and set that up. I was also going to go walking today for one of the first times since my 3 Peaks, but unfortunately I heard the rain start at 5am this morning and it didn't stop all day! And it's not the best way to start motivating yourself....but I promise I'll do it next week if the weather gets a little less depressing. But today I started doing the step on the Wii, a bit of running and some hula hooping (I swear that no-one else will ever see that hip movement or I'll be the laughing stock of West Wycombe!).

And on top of that, I finally made bread for the first time, thanks to my sister's encouragement. So homemade bread it is from now on....the breadmaker is going to the charity shop now!

I was going to post about our nightmare with John Lewis and our dishwasher, but that is pretty boring (not that the rest hasn't been) and so I'll leave it. I'm not quite so cross with them now that they're refunding 1/3 of the cost of it and we're hoping they'll donate it to Myeloma UK - so perhaps blogging about the experience wouldn't be too fair.

Right, off to bed now with some sleeping tablets. Will leave Nick watching My Gypsy Wedding and go to bed now :-)

BLIP? Cycle 3 - Day 8

2011-01-26T13:28:00.000Z

Blip time.....well for my mindset anyway!

I got my paraprotein results yesterday (my bday too!) and they have come down but have only come down to 27. I don't know why, but despite the doctor saying they probably wouldn't keep coming down so fast, I had really banked on them coming down a bit more than they did. It was a bit of a downer hearing that they hadn't.

I try so hard on here and in general to be positive about stuff, but found myself getting a bit low yesterday. I suppose I'm a bit scared of what might happen. I feel like I'm dealing with the chemo quite well so far, so in my head, I'd felt that I could cope with the next couple of months and the transplant....but if it doesn't work so well (and I know I'm getting ahead of myself here!), and I have to go onto Velcade, I just don't know how that will affect me, the kids etc. Nick told me off for trying to second guess it all yesterday. He's right too (I so so hate admitting that!!). Really I just need to take a chill pill, wait till the end of my 4th cycle and see what they say. But it is not me to do that...I want to plan, I want to know when I'll be in hospital, I want to know if we can book a holiday, I want to know what childcare I need to sort!!!

People on the Under 50 site have been great though...a couple of people have mentioned that sometimes a quick remission, can lead to a quick relapse, and God knows I don't want that. Also, (and I may be clutching at straws here!), my paraprotein was pretty high to start with, but with a relatively low figure for my bone marrow....so it could be that I don't need it to go so low for them to give me a transplant. And I suppose the other thing to think about is that perhaps every month I don't have to have the transplant is just another month....another month with no risks, another month towards a 'relatively' healthy lifestyle, and another month towards new treatments being found......but please, no-one else is allowed to say that to me!!! Only I'm allowed to talk about the possible cures for the future!

I'm dribbling on a bit today...sorry....bit tired as I've worked all morning. Think it might be time for a cuppa before the school run and swimming!!!

Will try to perk up for next time :-)

Cycle 3, Day 6

2011-01-24T13:06:00.000Z

Firstly an apology to anyone who has been waiting to hear how my last appointment went.....I'm not quite sure where the last week has gone, but I just don't seem to have had 5 minutes to do anything. Still, that has to be a good thing, that I'm not moping around feeling sorry for myself!!

I don't have huge news on my paraprotein as I'm still waiting for that to come back to me (hopefully today or tomorrow!) but all in all things are going pretty well. They were really pleased with how my first cycle went, and how I responded to that so that's good news. My symptoms and side effects haven't changed much since then and, if anything, I seem to be better with no bruising and less breathlessness, so it's all good!

I did have a long chat with them about how things would work from here on though, in terms of how decisions would be made. It is all a little complicated but I thought I'd spell it out for those of you who have asked about it.

Basically, nothing will be decided for definite until the end of my 4th cycle of chemotherapy. This finishes in mid March. If my paraprotein has reduced significantly by then (I think to well below 10), they will do a further bone marrow biopsy to check that my actual bone marrow has improved. If the abnormalities in that have reduced to less than around 10%, the likelihood is that they would go ahead with a SCT. If this happened, I would spend the following 2 weeks having chemo, self-injecting growth hormomes to stimulate my stem cells and then harvesting my stem cells. After this, I'd probably get a couple of weeks to chill out a bit (and maybe go on holiday with the family) before I went into hospital for my 2-3 week stint!! If everything happens as smoothly as it could do, I could be looking at a transplant at the end of April/ beginning of May.

However, all of this can go up in the air at any stage, as if my paraprotein stops responding, or if my bone marrow doesn't improve as fast, or if I don't produce as many stem cells are required, everything will get postponed! I could have to do extra cycles of chemo, or retry the harvesting process using a different type of chemo etc.

I think the uncertainty is always the hardest bit of all of this....especially for a control freak like me. I like to plan and I'm not able to do that with this! I'm getting ever so slightly nervous now that we could be close...after all, it's all happening this year now ...up till now I've been thinking in terms of 'next year'. The good thing though is that I'm in contact with a few people who are going through transplants and who have been able to give me such a positive story....that is such a help.

Work still is the thing that is most in the air for me, though they are being quite supportive at the moment which is great. I had really thought about giving it all up by the end of this month, but I'm not sure I will now...the money helps no end and I'm still hanging out for some sort of contract that might help me in terms of covering sick pay when I have my transplant. I'm a bit torn though, because part of me is shattered and would like to just take some time out to get straight at home and with the kids. How do people make the right decisions with the whole work-life balance...it is so hard!

In the meantime, I'm doing loads of playdates for the kids....building up those favours so that I won't feel so bad when I need other people to help me in the months to come!! Shattering though!

Will update once I get those paraprotein results.....keep your fingers crossed for a similar response to last time!!!

Looking good so far: Cycle 2 - Day 21

2011-01-11T09:59:00.000Z

It's been so long since I wrote....so much for keeping a regular diary!! So for some reason, I've chosen a day when I have my sister here, and 2 kids at home sick to update the blog!! Hmmm, rational....not with me!

So what's happened since December? It seems like ages ago. New Year. Well, I can't say I ever really liked New Years Eve....so much pressure to go out, drink lots, and HAVE FUN. Not that I don't like having fun of course, but the idea that you have to go out that evening or you're a bah humbug really gets me down. The last few years, having kids, Nick and I have gone against the pattern, and have just stayed in, cooked a nice meal and talked about the future.

Funnily, it didn't really appeal this year. We went to a friends house, but were home before midnight....I didn't really want to be with other people when that clock ticked over. Nick and I didn't even say HNY to each other....it's not really a year that oozes with happiness...more potential of what might happen after my transplant. It's going to be tough but hopefully will be offering a more positive future. I can't quite imagine what things are going to look like in 2 months time...it's all a bit scary to think of it in too much detail....I think we'll do that once we know what the date is for the actual transplant.

It was nice after New Year to just have a few days the four of us....no visitors for once which is really unlike us, but was actually really nice. We just straightened up the house, played games and had some quality time as a family which was great.

After New Year I wrote to the hospital to find out what my December paraprotein result was. That is the main result that they follow to see whether the chemotherapy is working or not. I got the result at the end of last week, and the great news is that it has dropped from 45 to 32....that is the level it was when I was first diagnosed in July 09. So, it is going in the right direction, and hopefully it will continue that way over the next month....or 3! I belive, and will check this at my next appointment on the 18th, that they are looking for it to go as close to 0 as possible and if that happens, they would be hoping to do the Stem Cell Transplant (SCT) soon after I finish the chemo cycles (probably April/May).

In terms of side effects etc, I'm still doing pretty well in the grand scheme of things. The main difficulties I seem to suffer from, are tiredness, an inability to sleep and a horrid taste in my mouth (similar to the taste you have once you have had a filling at the dentist!). I've finally clicked that the anti emetics do help the taste a little, but sadly not enough to stop me stuffing my face full of food to try to get rid of the taste! So if anyone out there has any tips on how to get rid of the taste/sickness without piling on pounds, I'd love to hear them!!!

I'm still working around 10 hours a week but am finding that harder by the week. I seem to have more time where I don't sleep and that makes me a bit shaky and a bit less focused. Sadly I don't get sick pay so if I don't work I don't get paid.....so I'm trying to keep going for as long as possible before I stop. I'm also talking to my company to see if there is anyway that they might be able to help me through the treatment period, but I'm not holding out much hope there. 13 years with one company perhaps doesn't mean that much after all!!

Right, I'd better go and stop neglecting my children now.....will try to update more regularly!!

Christmas Cheer - Cycle 2, day 8

2010-12-29T20:54:00.000Z

I hope that everyone has had a lovely Christmas, loads of lovely presents and is looking forward to a healthy, and happy 2011!

And despite how worried I was about Christmas, I have to say, it's been a pretty good one all in all. When I first found out I'd have started chemo and be high on drugs on Christmas day, I can't say I thought I was particularly lucky, but now I feel differently. Nothing has changed in terms of side effects etc so I won't bore you with that...how lucky am I? People seem to think I'm weird to say that, but I really think I could have had far worse in terms of how I feel, and what is happening to me so I do feel pretty lucky. One of the blogs I follow, the guy went in for his transplant on Christmas day and was still cheery to the last....now that is inspiration for me!

We had a lovely Christmas day...my favourite present, a beautiful locket from Nick and the kids. All 3 of them had written a little message for me in it for now, but for me to read when I go into hospital...how to make a girl cry by 8am on Christmas morning! It was so gorgeous and I will treasure it.

We've been in the Midlands since then, with Nick's parents and seeing his brother and two of my sisters. Nick had his bday too so all in all it's been pretty manic but lovely. I'm shattered today and am now in bed. So tired that I forgot to take my meds this morning and only realised this evening....not good but hopefully it won't have a major impact! First time for everything, and hopefully the last!!

Off home via my parents and godmother tomorrow....very much looking forward to being back in my own house for a while but will miss the kindness everyone up here has shown (and the help with the kids :-))

Day 28 - End of Cycle 1 of CRD

2010-12-21T19:36:00.000Z

So I got down to the Marsden yesterday and gave my blood sample without any hassle (well apart from the 3 times it took them to get the needle in the right vein!). The hope was that by getting down there early this morning, the negative pregnancy test (which I have to have to be allowed the revlimid) would be back nice and early and I'd be able to pick up my prescription early, and either spend some time with my sister, or get home if the snow was closing in....but of course that would be too easy!

So I got there for 9am, had my zometa infusion (which I have to have monthly) and waited. The good news is that my hb is back up to 10.9 which is nearly normal. The thing that initially slowed things down was the fact I've been pretty breathless recently and so they wanted me to have a chest xray to rule out any issues there. That all came back clear :-). Eventually I got to see the doctor and he has just said to keep an eye on the breathlessness and if it gets worse to get back to them and they'll give me a CT scan to check it isn't DVT. I think he was less worried as I had something similar (though not quite as pronounced) after a low hb result around the time I was training for my 3 Peaks Challenge. So hopefully it's nothing and we'll have a hassle free Christmas!!

Anyway, I eventually got the drugs at 1pm and headed back to get my kids from my sister and head home....luckily the roads were pretty clear and easy! I even saw planes going from Heathrow which is a bit of a miracle at the moment.

DAY 25 - CRD - Everything at a standstill

2010-12-18T17:27:00.000Z

It's been a week since I last wrote and we're currently snowed in! Despite living on the A40 in Bucks which is a fairly main road. We probably could get out.....but with an open fire, plenty of food and a new delivery of wine, I think we'll stick with the idea that we're snowed in!!! lol!

Anyway, things are going really well treatment wise. The cycle that I follow is 21 days of revlimid (with the Cyclophosphomide and the dex interspersed on various days), and then 7 days which is just all of the side drugs that I have to take to stop flu, fungal infections, DVT, etc. And I think those 7 days will be a fantastic relief each cycle as I seem to get my taste back and feel like normal again which is so nice. We went to a wedding yesterday (despite having 2cm of snow during the day and it being -11) and I actually felt like a total human again which was fab.

I'm back at the hospital on Tuesday (weather permitting) to be checked over and given the next cycle's worth of drugs. I'm slightly worried now with the weather, what will happen if I can't get there...the Marsden is an hours drive away and Sutton hasn't got over the snow they had about 2 weeks ago I don't think!! I don't think they'll let my local hospital do the tests etc so it could delay everything which might result in me not being able to stay in the trial....not that they have said that, but it is my concern. I am very happy on it, and feel really lucky so would hate it if they changed that. Anyway, no point worrying until I speak with them on Monday.

We were meant to be seeing father christmas tomorrow with the kids but that has been cancelled too with the weather, so it looks like it'll be another day of christmas decorations and chilling out in the house.

Day 18 - CRD

2010-12-11T20:32:00.000Z

I feel so lucky in so many ways. At the start of this process, I would have given anything if someone had told me that tiredness and a bit of nausea was my main problem! And 18 days in, those are my main issues.

It's hard sometimes to stay positive though when I keep on feeling like that. I know I'm really lucky, and I know that I should be so so grateful....so many people have such terrible side effects. But the last two days have been hard and I am totally wiped out at the moment. I have a mouth that tastes like a badger has died in it and whatever I eat tastes awful.....but I can't stop eating because it feels so horrid when I'm not. And to top that, I haven't really slept the last two night. I thought it would be when I was on dexamethasone that I struggled with sleep, but it seems to be much more random than that. It's not that I lie there awake for hours, but more that I wake every hour on the dot and am pretty alert before falling back to sleep. Which has left me in a bit of a state!! Good for nothing come the evenings!

We're still doing stuff.....Nick's brother came down with his wife and little boy today which was lovely...we took all the kids to see Father Christmas at the local farm and they had a ball....I want to keep stuff going for them. It's hard though, as really I just want to curl up in front of the TV at the weekend so that I have some energy in the week!

Anyway, tomorrow will be a family day....the kids want to do their christmas cards and we'll just chill out here I think! Lovely juvely!

DAY 15 - CRD - Looking good (ish!)

2010-12-08T12:11:00.000Z

I had my two week check up yesterday.....to check I hadn't dropped dead or blown up into a pumpkin since I started taking the CRD regime!!

It was fairly good news with them not being too concerned about my various small side effects and feeling happy that all was going well. They don't get my paraprotein results until my 4 week check up on the 21st (and even then I won't know that result until after Christmas) but they are able to do a 'cheats' test by looking at my total protein, and it looks like that is already starting to reduce on the chemo drugs so that is good....the idea is that my paraprotein will drop as close to zero as we can get it!

Other than that, the only thing to report is that hb has dropped quite significantly from 11.1 a week ago, to 9.9 yesterday. That is considered quite a steep and rapid drop but given that I haven't had any symptoms to match it, they don't feel it's necessary to do anything at this stage. Apparently I'll have to drop to 8 before they would give me a transfusion, assuming of course that I have no symptoms develop in the meantime.

So I'm feeling pretty positive with the protein results and hoping that we get another goodish couple of weeks in the run up to Christmas....now off to do more shopping and try to get totally organised...but I'm nearly there :-)

Kids are loving the Christmas music, calendars and the tree....it's so nice now they're getting old enough to enjoy it all!

DAY 11 - CRD - And another.....

2010-12-04T20:20:00.000Z

So day 11 and the side effects are starting tot build up, though luckily are not anything major still. Day 8 saw the start of some minor breathlessness for a couple of days, but that has now gone. And for the last 3 days I've had a nausea similar to what I experienced in the early days of pregnancy.....sadly then I had something to look forward to with it!!! I've decided I need to stop being stubborn and start taking the anti-emetics that they gave me.....someone has told me that it will make a big difference.

Today I seem to have come out with a rash all over my body....something that I think is quite common to being on revlimid, but I'll mention it when I go to the hospital for a 2 week check up on Tuesday.

Luckily though, we're still managing to do the normal every day stuff....today we went to see Matilda at Stratford-upon-Avon with Sam's godparents...it was great and a really fun thing to do :-) The kids both loved it which was great, especially since it was Sam's first theatre experience! Tomorrow the plan is to have a chilled out 'creative' day getting ready for Christmas.....now to some that wouldn't be a big deal, but for us, it is....I HATE creative stuff, but love the idea of the kids doing it.....so we'll see what we can come up with....last year it was father christmases made out of toilet rolls.....hmmm, they definitely had more to do with toilets than father christmas!!!!

Anyway, 4 dex days starting tomorrow, so we'll see how that all goes!

DAY 7 - CRD - It gives me fever!

2010-11-30T20:20:00.000Z

So I knew things were going too well! Nick went off on business to Madrid yesterday morning, and I got through yesterday no problems, just to develop a fever at about midnight last night. I spent the whole of the night with a fever of over 39.

My parents were fantastic and when I called them at 6am, they came over so that they could help do the school run, and look after the kids for me. Then it was off to A&E to check that I wasn't neutropenic (think that would mean I was incapable of fighting infection) for 3 hours with a cracking headache. Anyway, all came back clear so I've spent the afternoon in bed trying to get rid of the headache that had obviously developed.

But I'm feeling much better now (hence why I'm on here!) and hopefully will get a good night tonight. Poor Nick feels terrible that he's been away and that he'd come back, but it seems unneccessary. I hate the fact that the myeloma might start impacting our life....I knew it was coming, but I think I had hoped I'd be the exception, that everything would run smoothly, and that all would be good at the end of it.

Anyway, tomorrow is cyclophosphomide day (chemo drug!) so hopefully that won't do anything major.

Day 5 - CRD - still going strong!

2010-11-28T20:10:00.000Z

5 days in, and I'm now on day 1 off the Dex, and still seem to be doing fairly well....fingers crossed!

I woke up yesterday and freaked ever so slightly when I looked at my legs to see some big raised bruises. I think that it can be the start of thrombosis so it worried me a bit for the day, but the bruises certainly haven't got any bigger and if anything are a bit more subdued.....so I think it's a bit more of wait and watch!

We had my nieces 21st birthday in the Midlands during the day which was lovely as lots of the family were there and it was nice to do normal stuff. I think I was a bit not myself (so Nick says!) and quite quiet, but I think that was as much to do with the fact I was a bit worried from the bruising. But I got more into it as the day went on and all in all it was lovely and great to see her looking so happy and grown up! I tried a glass of champagne to toast her, but sadly it just tasted like salt water so I gave up on that pretty fast.....everything seems to taste of that at the moment so I'm hoping that perhaps I'll lose weight on chemo rather than putting it on!!!

It's been a fairly chilled day today given we knew it was my first day off dex. It's fairly common to have a come down after you come off it, and it can apparently make you quite depressed and miserable, but this, like the 'up' feelings when you go on it, seem to have passed me by. Fingers crossed I haven't spoken too soon on this! But we've spent the day just pottering, taking the kids to and from parties, and having friends drop in for the afternoon.....all very nice.

So now, it's a bit of x-factor, a cuppa and then off to bed I think!

CRD - Day 3 - Still looking promising!

2010-11-26T11:20:00.000Z

Has to be good hey....even missed my posting yesterday as I was so busy doing stuff!

Well, so far so good. I've still not experienced very many side effects and those that I have are tiny and almost not worth mentioning. Slightly funny taste in my mouth, drinking more than before (5-8 pints a day), a slightly fuzzy head at times and I seem to be a bit clumsier. But, I think a lot of these probably stem from the one main one which is that I'm not really sleeping well at night. I seem to spend it in a 'relaxed slumber' and wake up from this at regular periods. I'm not sure I'm getting any deep sleep at all, but to be honest, that's ok if it's the one main side effect I get.

I'm trying to keep my days a bit clearer so that I can have an hours sleep after getting the kids off to school, but to be honest, I'm not good at doing that in the day at the best of times, so trying to do it on Dex, isn't that easy! I've only got another day of Dex before I get a break for 8 days, so I'm hoping the sleep thing might sort itself out over that period so that I can catch up a bit!

So, all in all, nothing bad to report....life is definitely going on as normal and is as busy as ever....all good!

Will try to keep updating regularly!
x

DAY 1 - CRD Regime - so far so good.

2010-11-24T11:30:00.000Z

I spent the day at the Marsden yesterday and was lucky enough to meet Faith Davies who talked me through the nitty gritty of being on the Myeloma X1 trial.

I am lucky (I think) and will be having Revlimid instead of Thalidomide - if I'm right, I think it is derivitive of Thalidomide but has much better responses in patients in terms of extending the period of disease free period after a transplant.

Anyway, went in at 10am yesterday, gave more bloods as they had to do yet another pregnancy test (to check they weren't giving lethal drugs to a baby!!) and then met with the research team. Once they'd talked us through what to do if anything goes pear shaped, it was off for a full skeletal survey. We'd finished all of this by 12.30 and whilst they'd warned us that we wouldn't get my prescription until the results of the pregnancy test were back, we still expected to be out of there by 3ish. But, at 3pm we got told the results had only just got to the pharmacy and that we'd have to wait for at least an hour before we could pick them up. Anyway, the long and short of it was that we didn't get out with my bag of drugs until 5pm!!!

And wow what a bag! I'll try to attach a photo at some point but today (and it is one of the worst days!) I had to take 36 tablets. Anyway, I still feel fairly normal and the slightly dazed feel, I think is due to the fact I didn't sleep last night.

So all good so far on day 1, but will try to update on here as often as I remember!!

Flu's gone but bone pain arrived!

2010-11-21T15:26:00.000Z

Well just a quick update (I always said this was a diary for me as much as for anyone else!).

I lost the flu like symptoms by yesterday evening and just had a bit of a sore neck. But I have to say that today I seem to have had a lot of aching/bone pain at the site of my original bone marrow biopsy. What with being sore anyway from Thursday's biopsy on the left hand side, the last thing I wanted was pain on the right hand side too!
So I look a bit of a state at the moment and struggle getting in and out of chairs/ cars etc! But the hopeful thing is that I've read somewhere that the side effects tend to only happen with the first infusion, so I'm keeping my fingers crossed that next month, I won't react so strongly. And if not, it sounds like if they they slow the drip down, that that is able to reduce the symptoms. Here's hoping!

2 days and it will all be starting.......

How naive am I????

2010-11-20T13:16:00.000Z

Well, I woke up yesterday thinking how easy things had been. No reaction to the zometa (which I'd expected in the first hour after I'd had it), no real pain from the biopsy (first time it hurt so little) and basically I was on a high and feeling pretty positive about the whole 6 months ahead. After all, everyone has kept telling me that you can just keep going on the CTD induction therapy and that it doesn't have a major impact. And I believed them.....stupid perhaps!

So all was going well till yesterday lunchtime when I started to feel quite achy in my collar bone and ribs. Nick suggested it was just a reaction to being so tense during the biopsy. But by the evening every bit of my body was aching and I had cramps in my calves too. It felt like mild flu with my neck being particularly uncomfortable. Anyway, I'd got an evening out planned to celebrate a friends 40th and I was damned if I was going to miss that....so off I went and had a few glasses of wine.

By the time I got back at 11.30, the aching was really getting me down and poor Nick had me in tears about it. I so hadn't expected a side effect from the zometa and yet here I was feeling like this. No-one had told me I might feel bad from it so it was totally out of the blue for me. And then I admitted to Nick, that I hadn't really expected many side effects until I got to transplant time.....and he thought I was joking! I have listened to so many people telling me it doesn't affect you too badly, that I think I'd gone to the opposite extreme...no wonder I've been able to be so positive. And no wonder everyone thought I was being remarkably brave.....in reality it seems that I've just buried my head in the sand! Ooops!

So today, I'm a bit nervous of what the next 6 months will hold for us. I still want to try to be strong, but I have this feeling I'm going to be more wiped out by this treatment than I had expected. So if I pull out of things, please forgive me, and if I don't behave in the way you expect, I hope I'll be back to normal soon. I need to be strong for the kids (and for Nick) but that might not leave much left for anyone else!

Anyway, better go and get lunch on now....

Myeloma 11 and the story goes on!

2010-11-18T21:52:00.001Z

Today has been a strange day. Yes, I was due to start chemo today (CTD), but surprise, surprise, it hasn’t gone to plan….nothing seems to with me! Got to the hospital, they took my blood, gave me zometa ( a biphosphonate) and I waited to see the Professor to have him give the go ahead for CTD.

I went in, he agreed it was time to start treatment......and then told me I had the choice of CTD or the Myeloma 11 trial! Arrrgghhhh! It was all meant to be so simple. I didn't even know the trial was on offer. And then there he was telling me I was the perfect candidate for it!

It offers the opportunity of having revlamid instead of thalidomide in the early stages (if I’m the 50% that gets that) and revlamid as a maintenance drug (as opposed to no maintenance drug). It sounds like in a french trial it did really well so we decided to go with it but it means I don’t start now till Tuesday as they couldn’t do all the trial prelims! I've attached a link for anyone who wants to know more about what will happen.
http://www.controlled-trials.com/ISRCTN49407852/myeloma+XI

So, off I went for more bloods - they had to check I wasn't pregnant (good god no!), and all sorts of other things, and then I had to have another bone marrow biopsy. I wasn't too worried about it as the last one hadn't felt too bad....I mean it hurt, but it wasn't as bad as the first. Hard to say exactly how it feels. Anyway, I have to admit that I burst into tears at the end….I think the whole stress of being strong for the last 2 weeks came out when they did the last grope around!! I felt like a bt of a failure for being so soppy! But then again, I do feel I’ve held it together really well over the last 2 weeks.

So overall we're pretty positive that it's the right decision to hold fire for a few more days. But it is also quite tough psychologically. In fact the last year and a half have been harder psychologically than anything else. But we're about to get going and hopefully there'll be no regrets.

The hardest is most definitely with the kids. We told them two weeks ago and they took it in a fairly matter of fact way. After all, at 4 and 6, they're too young to really get the whole thing. But interestingly, sam especially has mentioned it a couple of times, and seems particularly concerned about when I'm in hospital. At the time we told them, we wanted to tell them about all of it so they didn't see it as the medicine not working when I go in for the SCT and am in hospital for 3 weeks. But now, he has mentioned a couple of times about it. I could do this whole thing if it wasn't for the kids....I hate the idea of it affecting them and them changing because of it all. They're so little and really don't deserve to have to see their life become harder. Hopefully as parents we can keep it as normal as possible for them....that's our aim and hopefully we'll do it!

So tomorrow is another day, and hopefully we can make the most of a weekend as a family of four, treatment free :-) Has to be a good thing! Nick has even promised to do another roast like he did last Sunday......yummmmmmm!

I'll beat it yet!

2010-11-04T21:29:00.000Z

Where to start?
Well probably with the fact that over the past week, I have had a pain developing in my hip area....around where they do a Bone Marrow Biopsy. The pain feels exactly like when I had the biopsy too which made me wonder whether or not it was bone pain. It's so hard to know what bone pain feels like and I've had so many times where I've thought I've felt it, but it has just been stress causing it.....and I suppose there is a slim chance this is the same.

Anyway, I had my consultant appointment today and told him about how it felt, and he immediately told me that he wanted to start the treatment. He said that whilst we could wait a bit longer and see how things go, that with my high paraprotein levels, lowering (again!) haemoglobin levels, and now this pain, that he felt it was important to get on top of it before it caused me any serious end organ damage.

I know that there will be some of you out there thinking that perhaps I should fight this one and hold off longer, but to be honest, we choose this consultant because he was one of the best, and I really think we trust him to make the right decision here. I don't want any breaks or anything if it can be avoided and treatment now will hopefully give me a positive future.

So I will be starting chemo (CTD) 2 weeks today. CTD is Cyclophosphamide, Thalidomide & Dexamethasone. I'll take it in tablet form at home along with having to inject some form of blood thinner. It sounds like it'll last for around 3 months after which I'll probably have my stem cells harvested (no big deal I don't think!) in anticipation of a transplant sometime not too long afterwards. The chemo shouldn't cause the stereotypical side effects and I should keep my hair etc. It sounds like I may go hyper at times, exhausted at others, and perhaps swear at Nick a bit more often than usual (he can't wait!).

I'm feeling pretty positive about the whole thing - the consultant seems to think that because of my age/ cytogenetics etc that I have a really positive prognosis after treatment and that potentially I could have years and years of remission from a transplant.....and that is such a great thought after what we had originally envisaged (2 - 5 years in total! Damn those out of date internet figures!)

I probably have much more to say, but it's been a pretty exhausting day so I'll leave it till later in the week.

xx

Been a while!

2010-10-15T12:22:00.000+01:00

Well it has been a while since I last posted....largely because there isn't much to say on the MM front until I next see the consultant on the 4th November!

It's been a busy month since the last appointment what with a birthday party for my lovely 2 children (off to Neverneverland with Peter Pan!) and 35 other kids, my daughters actual birthday and numerous other catch ups with family and friends.

Sam has now started school and is settling in really well....given that he is the youngest in his year we are so relieved for him, and it makes it so much easier thinking that he is settled if I have to start treatment at some point in the next year. And Rebecca is doing fantastically too so we are really pleased with them both.

As for me, well as I said, nothing much has changed. I still don't seem to have any symptoms (the pain in my neck is pillow related!!!) so seem to be hanging in there - I'm just hoping I can be the exception to the rule, and flumax those consultants.

I still find the 'limboland' pretty hard to tolerate and hate the fact that we're living our life in 2 months stretches at the moment. Part of me wants to stop it and just assume that I won't have to start treatment for ages, but part of me knows that is just silly and that I'll then just feel like I've failed if I have to change all our plans.

Still, it has made a big difference giving the bloods on the same day as my appointment....at least now I don't have to worry for the week leading up to the bloods and then for the week leading up to the appointment. I still have a few blips here and there. I was at the gym the other day and two ladies were taking about their kids choosing secondary schools - I suddenly felt myself well up as it made me wonder if I would be here to do that....and if I was, would I be well enough. I know that I need to keep thinking positively (and I do most of the time!!) but every now and again thoughts like that creep into my mind and I find myself getting sad that I have to go through these worries.

But through it all, I just feel so lucky to have the people around me that I do. Nick in particular is just amazing. I am so lucky to have such a lovely husband who loves me so much (and who I love so much too!) gush gush!!! But he is just amazing and is a real strength to me. I can't believe how good he is and how much he is prepared to take on to support me. He has never made me feel that we can't cope with this journey, and seems to know what to say, and when. So Nick, if you ever read this, thank you my lovely!

Anyway, enough gushing for one post...it's making me all teary just thinking of it!!!

Been a while

2010-10-15T11:38:00.001+01:00

Well I haven't posted for a while....

Reprieve!

2010-09-09T14:39:00.000+01:00

Well, after all my worrying, it turns out it was for nothing!

I had my next consultant appointment today to find out the results of my BMB and my MRI. We had been pretty much expecting him to want to start treatment so weren't surprised when he said straight off 'So we're looking to start treatment now'. BUT, within 10 minutes he'd totally changed his mind and decided that we could wait until I was showing further signs of deterioration. Talk about a rollercoaster!!!

It looks like my hb is 11.6 (down slightly), calcium dropped ever so slightly (good news), protein up to 45 (from 44 - not so good but fine), blood count fine, kidney fine, bones fine. The only thing that isn't is that my marrow has gone up to 50% abnormality from 10% this time last year. Not great as he said it definitely puts me down as having Asymptomatic Myeloma and that as it continues to get worse it will have an impact on my figures.

But no treatment!!

He wants to put me on zometa, and other than that has said that we'll watch and that if my protein continues to rise that he might advise treatment. He was great though as I explained that I'd found it really hard to think I'd have no notice of the treatment, and he said that if he recommended I started, that he'd let me go away for a week or two first. Brilliant to hear.

He said it is a definite 'when' and not 'if' I start treatment, and he wants to watch my marrow quite carefully (hmmm, think that prob means another BMB in 6 months :-() but I'm feeling very relieved and like I want to crack open the champagne today!!! 2 months more (before my next appt on the 4th Nov) to settle Sam, and 2 months more without treatment....all has to be good!!! Nick thinks I'm barking mad, I'm so happy!

Anyway, nearly time for the school run, but I am so so happy!!! I have never felt so much that every month is really valuable.

In Memory

2010-09-02T12:49:00.000+01:00

I don't know quite how to start this post. I had some bad news yesterday....no tragic news....a friend from the Under 50 Myeloma site died after 6 months of fighting infection and GVHD (Graft v Host Disease) after an allo transplant.

She was a fighter and a really spirited lady, and whilst I hadn't met her in person, I'd read her blog and been in touch with her via text. She will be so sorely missed and sadest of all is that she leaves behind a daughter who is only 13...and who lost her dad to cancer 2 years ago. Bloody hell. Life is so unfair. And for the first time in this whole journey, I am so cross with God. If he is up there, he sure as hell makes some weird decisions as to who gets the bad luck.

A touched the lives of a lot of people in the Myeloma community with her blog, her advice, and last but not least, her language (as someone on the Under 50 site said, she's probably making the angels blush right now!!). All I want to say for now is that I wish her family lots of love and thoughts, and that I know they will have many many positive memories of someone who was an inspirational lady.

Here's to you A.

When will I know.....

2010-08-31T22:47:00.000+01:00

Well it's been nearly 2 months since I was first told that I might have to start chemo and I still don't know. It was fine for the first month, but I've been finding it much tougher recently....I just hate the waiting game. I feel like everything is in someone else's hands again and being the control freak that I am, I HATE that!!!

I'm trying really hard to get on and be positive, but in the last couple of weeks I think I've got angry about this whole thing for the first time. It is so unfair that this is happening to us. I know it isn't fair that it happens to anyone, but it's unfair it's us too! We celebrated Sam's 4th birthday the other day which was just fantastic but it brought it home to me again that things might stop me celebrating as many more as I'd like to. I know that sounds morbid and defeatest and I know that lots of people would say that none of us know when our time will be up, but living with that knowledge is pretty tough.

I know we'll cope....we've done pretty well so far. And I'm determined to be as positive as I can be throughout it all, but surely I'm allowed to feel a bit low about it occassionally? Now's my moment!

I emailed the hospital to find out when the chemo would start if that was the decision. My next appointment is the 9th, and it seems that if I do need to start, it would all kick off that day! I needed to know that so I can get my head round it in advance. But it's a bit of a weird concept! To be honest, I just want to know either way now and I know it won't be too bad in the first few months even if I do have to start it.

I have to say, the support I've had from people I've met through this blog and through the Myeloma UK site has been second to none and has helped me to not worry about the actual treatment itself. I don't know how I'd have got my head round it all without that help and advice from people who've already been through it. And that includes lots of people who've gone years after treatment. Fingers crossed that will be me too.

So I'm just hoping that the next week goes pretty fast....luckily Nick isn't away this weekend after all, so I'm hoping that we'll have a super weekend and make the most of it.....that way if I do start treatment, we'll have enjoyed ourselves fully and if I don't, well, we'll still have had a fantastic weekend!!!

Fill you all in next week!

Loving the Change!

2010-08-19T10:12:00.000+01:00

Well, yesterday was officially change over day to the Royal Marsden in Surrey. And god am I pleased that we have done it. Whilst it is over an hour to get there (in comparion to 10 minutes at Wycombe!), the hospital is in another league. Everyone we met from receptionists to the cafe staff to the nurses who took blood were SO SO SO nice! It just seemed that everyone was going out of there way to make us feel as comfortable as possible....I mean we even had someone offer us a cup of tea in the waiting room!! In a NHS hospital!!!! (And before the bah humbugs out there say it is a waste of NHS money, those people are all volunteers).

So the first thing was my MRI. Not too bad with that as I'm not claustrophobic and just closed my eyes. Given I hadn't got to bed till nearly 1am that morning and we'd been up at 6am to get to the hospital (dropping the kid at my sisters on route) the closing of eyes wasn't too difficult! After that I had to give blood and even that was a pleasant experience in comparison to usual. Interestingly, they took far more samples this time, my light chains are now going to be measured on a monthly basis and for the first time they have taken a urine sample to check for bence jones etc. They also did a nasal swab (hmmm, not sure why that was needed!). I feel like already everything is being done more thoroughly than at Wycombe and that gives me more confidence.

After the bloods it was the bit I'd been dreading. The bone marrow biopsy (BMB). Because this goes into bone, they can anethetise the skin around but not the actual bone. So you sort of get this grating feeling as they dig a corkscrew-like implement in deep!!! I have to say that this time was slightly less painful than last time I had it done, even though they weren't able to offer gas and air like I had at Wycombe. Lots of people have it under sedation but I'm not sure it helps that much. And hey, it was much more fun squeezing Nicks hand until he had no blood moving in it!! The BMB always makes me a bit shakey afterwards, but this time it was Nick who was shaking the most....not sure he'll want to be there next time. Still, at least I held his left hand (he had jokingly talked about it not mattering if I broke that one...how little he knew!)

What was great though was that they gave me a copy of my blood results on request....and I didn't even have to wait for them to be sent through! No hassle at all. It looks like my haemoglobin has gone up again...whoopee! Up from 11.3 to 11.9 so it is definitely rising fast! My calcium is still quite high at 2.55 but most of the other readings that I could have so quickly were fine - only the protein to find out about.

So I'm still hoping the chemo can be delayed....we'll find out on the 9th. I have emailed the hospital to see if they are able to give me an indication any sooner but unless my BMB or MRI shows up anything, I don't see how I'm far off where I was this time last year so it seems odd to treat. Fingers crossed I will get to do a term at least with Sam starting school.

Anyway, all good for now bar the sore back from the BMB!!!! And I can cope with that one!

round and round and round!

2010-08-07T18:19:00.000+01:00

I haven't posted for a while because we went on holiday a couple of weeks ago to Spain....really nice to have a break away from everything that had been going on. We went with Nick's parents and even got a few days in Barcelona (kids free!). It was a great time and the kids loved it....Sam learnt to swim with no aids and Rebecca got better with her breathing too (swimming that is!).

We went in a slightly strange position. I had my final consultant appt with the High Wycombe consultant on the Friday that we flew, only to find that my haemoglobin had gone back up to 11.3....really nearly on the normal scale and around where I was when the whole thing kicked off. He was gobsmacked and so were we. We didn't really know what to say to him as it was the last thing we had expected him to tell us - everyone had been so quick to tell us that my hb wouldn't go up and not to expect it to. He said that if I was being treated by him still, that he wouldn't start treatment yet and that he'd just watch what happened for a bit longer.

As it is, we're moving to Prof Morgan at the Royal Marsden and so it will really be down to him. He wants me to have a fresh MRI scan, bone marrow biopsy (not very nice!!!) and some other tests to check where I am. But what we don't know is whether he would still recommend treatment if that were all the same as before and my hb stayed where it was. I have to say, I think we'd push to hold fire if that was the case....I don't want to risk getting bone disease or kidney disease, but in the same way I don't want to start treatment unneccessarily.

Anyway, I have an MRI booked in for Wednesday and am going to try to get some of the other tests done then. I'd just like to know where I am with it all really. We'd just made all the plans and then it changes....round and round we go. Not that I am knocking that I might not be progressing of course!

Right off to treat mosquito bites on my kids and get an early night.

Will update when I know more!

Ready, steady, go!

2010-07-20T21:18:00.000+01:00

OK, so we've been today to see the big Prof and the news is that despite my hb levels having gone up slightly, that he would still recommend treatment. :-( (Don't think you can do proper sad faces on here!)

So, it looks like after a long deserved break, drinking G&T, we will back to an MRI, a bone marrow biopsy and probably the start of the road of chemo.

I probably ought to clarify what it all looks like for those of you who don't know. If it goes as planned, it will start with low dose chemo (CTD) in August/September. This will last for about 3 months, after which they will harvest some of my stem cells. None of this sounds like it will be too intrusive in the grand scheme of things, and I think I should be able to carry on life as normal (or pretty much so, bar the jekyll and hyde personality I might take on....oooh lucky Nick!!! He thinks I have that already!!)

Once we get through that, they freeze the stem cells until I am ready for a transplant... the Prof suggests sort of New year time for that one and then I get high dose chemo for 4 hours (and yes, this will lead to hair loss etc etc) before having my stem cells reinjected to me. It sounds like I'll then be in hospital for 2-3 weeks sort of in isolation, before they send me home to recouperate. And that will hopefully only take a couple of weeks but could take up to 3 months.

Funnily enough I feel pretty ok about it all. I have found the last week really hard since I saw my levels go up again, as I think I find the not knowing really hard....control freak that I am. At least now, I know what is going to happen, in what timescales, and what we need to watch out for. All good in a warped sort of way.

So now we need to plan as more than anything in the world, I want to keep things as normal as possible for the kiddies. I am so scared for poor Sam especially as he will be starting school as all this kicks off and the last thing I want is for him to have a tough time with it. But hopefully we can make it seem normal.

I'm also thinking about returning to work....strange I know but there is method to my madness and I am being very upfront with them. I currently work on a sort of contract basis where I only get paid for what I work so I get no sick pay etc. If I can go back to work, it would mean that I would be protected and if I was really ill, I could take the time off with no financial pressures. I don't know if they'll really go for it (not many companies would!) but if they do, they'd know that they'd get me back at the end of it for longer hours than I'm currently working. While the timing isn't great and I could do with not having to work longer for another 6 -9 months, it would be fantastic if we had that stability.

So much to think about and perhaps now isn't the time for me to waffle on (hmmm, have had a couple of G&T's already!)......catch up soon

A Little Piece of Good News

2010-07-15T09:36:00.000+01:00

Well, I don't know whether I should be too optimistic about this piece of news, but I am for now anyway!

Further to the news that my consultant might want to start chemo over the summer, we decided now was the time to use our BUPA and get a second opinion, none other than the influencial Professor Gareth Morgan. After a few issues getting the appointment, I managed to arrange one for next Tuesday.....whoa, scary or what!!! Prof Morgan is one of the best in the field, if not THE best so I'm slightly nervous of him telling me I'm getting him involved too early, being ridiculous or something else on a similar line!!!!

Anyway, I digress. My consultant is away until Monday so I've had to get my GP to do the referral letter which is fine apart from the fact that they only have summaries of my blood tests etc. So I emailed my nurse at the hospital to ask for the full results, and whilst she hasn't done that yet, she did send me the results of my haemoglobin from the 5th July (the day that I got my last less good results).....and my haemoglobin is up to 10.5!!!!!! Whooopeee!!!!

My understanding is that it is when it drops under 10 that they think that chemo is neccessary. So at 10.5, I'm hoping that I might get a respite! I have to give blood again on Wednesday (and possibly on Tuesday for Prof Morgan) so we'll see where it goes. No wonder I've got a low hb, with the amount of blood they keep taking! Lol!!!

I know that this might only be a short respite, and that it is still dropping overall. But it might give me another 6 months without chemo which would just be fantastic....I could see my boy start school and get him settled, both kiddies would be 6 months older, have 6 months more of 'nice' memories, and we would have 6 months more to really get to grips with what we're going to do as and when things change. And who knows, perhaps it will get better overall.

So smiling faces in this house at the moment....till Tuesday at least!

Yorkshire 3 Peaks - tick!!!!

2010-07-14T08:52:00.001+01:00

First of all, sorry to anyone who was waiting for my update on this! We didn't get back till Sunday evening and I got caught up writing emails and washing smelly mudridden trousers (sadly still mud-ridden, but not smelly!)

But the important news is that the team and I successfully completed the Yorkshire 3 Peaks Challenge in under 12 hours!! Why didn't someone tell me just how hard it was going to be though!!!!

Friday morning and 12 of us headed up to North Yorkshire in a minibus to face the trials and tribulations of the Yorkshire 3 Peaks Challenge. That’s Pen-y-ghent, Whernside and Ingleborough in less than 12 hours. Having just received the news that week that my haemoglobin was low and that I might have to start chemo over the summer, I wasn’t the only one slightly concerned about whether I would have the puff to complete the 25 miles.

We woke on Saturday morning at 6am and started off in a light drizzle. Pen-y-ghent didn’t seem too bad and we got to the top of there in around 1.5 hours…..easy we thought! Little did we know. Whernside just didn’t seem to end. It wasn’t as steep as the 1st peak, but it went on and on and on….and not long after we started our ascent, the rain started, and didn’t stop for 2 hours. By the time we got to the top it was wet, windy and we were all a little miserable…me, more than everyone else!!!! My boots had started leaking and I had the prospect of another 5 hours + with sopping wet feet. But my family and friends rallied round me and off we went, determined to get off that mountain as fast as possible! I think that it was about 8.5 hours after we started that we finally got to the top of Ingleborough after a really steep climb up…the side of this one is pretty much vertical, but we knew that once we were at the top, it would be a reasonable descent down to the end, even if we did have another 2 hours to go!

On our way down I got a call from my brother in law to say one of my sisters had pulled her tendon and so they’d have to walk slower, but for us to carry on. He was a hero and she was lovely to let us go on without her.

So, the first part of our group finished the walk in 10 hours and 40 minutes, with my sister and brother in law doing amazingly well to finish only an hour behind us….not bad since she had to descend on her bottom for some of it!! I am just so proud of everyone, for their personal achievement, and for the way in which they supported everyone throughout! It was a real team effort and a great weekend. I am so so lucky to have the family and friends that I have....but I already knew that.

The team have raised through sponsorship and through my parents doing events, over £12,000 so far and the money is still coming in to the various justgiving sites. If you would like to contribute please visit www.justgiving.com/debgascoyne. Thank you to everyone who has already sponsored us….we have been staggered by everyone’s generosity.

So, what next. Well the fundraising goes on hold for a short time while I work out what is happening with me with regards to treatment. I have arranged a second opinion with one of the leading specialists in the country on Tuesday and am hoping he will have enough information to give me a guide as to what he would recommend. Then I have the meeting with my consultant on Friday. So we'll be off on hols with some sort of recommendation either way....scary!!!

I feel quite calm about it all at the moment. Funny really. Maybe I've dealt with a lot of it in the first 6 months from diagnosis, or maybe it's still to come, but it's nice to feel in control for the time being.

Off to legoland today with the kids and my mum so have to leave it here but will write again after appointments!

Reality update

2010-07-07T11:46:00.000+01:00

Well,two days of coping really well I'm pleased to say. The last 12 hours have felt a little bit harder. I spoke with a lovely lovely lady yesterday who really helped me get things into perspective and to understand not only how things were likely to progress, but also what I could do to make sure that I got the best treatment at the best times. It was so useful and has made me realise that Nick and I need to start looking into Bupa and start the ball rolling with second opinions. It also made me realise that my haemoglobin is unlikely to drop and that chemo is perhaps more of a reality than I'd like to think.

I think the biggest thing I've realised is that the chemo they're suggesting is likely to be a prerequisite to the Stem Cell Transplant (SCT) and that it is quite possible that this could all be started before Christmas. Wow. So now, it's a case of trying to get as organised as possible so that if need be, other people can take over the day to day running of the house if I go into hospital for 2-3 weeks. And should I let Nick put in that downstairs toilet after all???!?!!

But I might be getting ahead of myself....let's hope so!!!!

Anyway, on a lighter note, I have now reached my £5,000 target for my 3 Peaks Walk on Saturday!!! And I have extra monies to add to that afterwards. I am so so chuffed as MMUK have just been great to me, and I've seen this even more in the last few days. How a small charity can achieve so much, is beyone me but they do.

Right, off now to start getting packed up and to do the last minute shopping.

Bollocksy bollocks (sorry mum and dad!)

2010-07-05T22:11:00.000+01:00

Bollocksy, bollocksy bollocks!!!!

Well, I had my results today and sadly they didn't quite reflect the positive attitude that I have been feeling this last couple of months.

Long and short is that my haemoglobin has gone down to a level of 9.9 from 10.9 (paraprotein as an aside back up to 43) and my consultant isn't very happy about this. He has basically said that if it doesn't go up again in the next 2 weeks that he expects the recommendation to be that I start chemo in the summer. Gutted or what. So I've given blood today to check my lightchains and my ferratin levels, and then I have to give it again on the 21st. He'll then take it to a panel on the 22nd and on the 23rd we get to find out if he thinks I need treatment. I'm off on hols that day so it's not great timing but hey you can't choose everything.

Funnily I seem to be handling this ok. I think that perhaps I have spent the last 12 months (literally to the day!!) considering what could happen so when it has become closer, I've been expecting it. Yes, I'm gutted. Yes, I've shed a few tears. But I'm doing ok. And that's great to me.

Again I need to thank C for his words of wisdom about what chemo can stand for. It sounds so scary to most of us, but it sounds like the reality is that CTD (which is what I'd be on) has lowish side effects and that I'm likely to be lethargic, followed by manic, followed by hair thinning. But the whole stereotype of no hair, throwing up everywhere and not being able to live, seems to be unlikely for my situation. And that all sounds doable :-)

There is still a chance I won't need to do this. If my haemoglobin goes up again,it could just be a blip and maybe the chemo can wait until after the hols, after Sam has settled into reception at school and after the kids are just that couple of years older. But if not, we'll deal with it.

The consultant also talked about an auto transplant which scared the living daylights out of me. Before he hadn't seemed to want to talk about STC's at all, and now he was discussing the sibling transplant that has a 25% mortality rate attached to it!!! But I'm not prepared to go there yet...certainly not till we know for definite that chemo is a neccessity and even then, I think it would be my last option.

Funny, I'm writing this in a sort of state of static. None of it really seems real. I seem to be making everyone else feel better about what is happening to me. In wierd way, I think it is how I like it...to be in control. I even feel more in control than N. That is absolutely unheard of. My rock. But I quite like the opportunity of repaying the favour for once in the last year....in fact once in the last number of years!

To those of you who have given words of advice and help in the last 12 hours, thank you so so very much....it makes it so much easier knowing that people are there for us.....we are so lucky to have the loveliest families around, the bestest of friends, and the nicest of acquaintances. And I'd thank each and every one of you for your kind words and messages of support.

Hopefully this will come to nothing and I'll feel like a fraud. But if not, at least I know that we are surrounded by people who love us. And that WILL get us through this absolute bastard of a disease. (sorry again mum and dad!!)

xxx

In the Bag

2010-06-29T11:17:00.000+01:00

Ok so yesterday was d day and my blood has now gone...nothing I can do about the results now. Not that there is anyway. I get my results on the 5th July so hopefully all will be good. I'm not quite as optomistic this time as I've not been well again. Coughs, colds, extreme eczema and infections. Other that that, fit as a fiddle! I've said before that I think there is some link between illness and my myeloma progressing, but I'm just hoping that the curcumin is helping at the very least so that perhaps even if I do see an increase in my paraprotein, that it isn't major.

All in all, I'm still feeling pretty positive about life. Unusual for me so close to an appointment, but I'm hoping that it's a sign that I'm starting to learn to live with the SMM rather than fighting it and feeling like a victim. After all, I might have a few years yet with no symptoms/ treatment. And all I can keep hoping for is that the prayers from my parents churches and elsewhere, are doing their job too!!! Maybe I could be that miracle that was suddenly fine after a diagnosis!

Busy week ahead in the run up to my 3 Peaks. Only 12 days to go. And finally my knee is starting to feel less painful so I'm really hoping that it's ok. I'm more nervous now than ever that I've done the wrong type of training, but at least I'm fitter. The distance (25 miles) doesn't worry me, but the peaks do. I went for a long walk with 2 of my sisters at the weekend and found the hills so tough. I have to stop constantly. And that's with training in the Chilterns. Oh well, maybe it just means I shouldn't be so hard on myself if I don't do it in the 10 hours I'd hoped for.

Not much time in the next week or so to train though. School sports day tomorrow, working Thursday, promised a family weekend, appointment on Monday, sam's school induction on tue, him at home on wed and work on the thu again.....hmmm, somewhere in there I HAVE to get some hill walking in the equation!!!!

Till next time.

Hungover but happy

2010-06-20T21:47:00.000+01:00

Well, I've had a really great weekend and am now tired, slightly hungover but very happy!
Friday started by meeting up with the Under 50 group in Wimbledon. We had over an hour with Professor Ray Powles who is an old hat in MM (Multiple Myeloma) and who spent the time talking to us all about what's in the pipeline and a bit about how we should think about facing/ managing our treatment as and when it is necessary. The great things I took out of it were that
a) my consultant is probably doing the right things for me (even if he isn't great at communicating with me about what is going on with my body and what MM is/ what it does/ what the indicators all represent)
b) not to get to worried about my Paraprotein levels as they are all individual and that we have to just look at the pattern once we have that first reading. That was really useful to hear as I always wondered how on earth I could have a reading of over 40 and not need treatment but other people have a reading of 13 and be talking about SCT's and chemo.
c) that it would be totally acceptable to get him to give me a second opinion if I wanted it, and that I didn't need to wait until I needed treatment.
It was just so useful and I could have spent hours in there talking through the stuff even though a lot of it was focused on those already on treatment. Someone asked if it didn't scare me listening to what I'm going to have to face in the future, but I just felt like it empowered me and that I was starting to understand this damned condition for the first time in the year since I was diagnosed.

Anyway off to the pub after that for a large number of G&T's and a chance to start to get to know my 'cyberfriends' that I have met via the website and talked to on facebook etc. That was just lovely as they were all SO SO nice. And in itself that was positive as it was great to see people making the most of life despite what it was throwing at them all. And people in the same situation as me too, dealing with jobs/ kids and the fact that life is going to be shorter for us than we had expected.

Back to my sisters after that and then home the next day where one of my bestest friends came round, was a bad influence and kept me up drinking till 1.30am....I am totally going to blame her (nothing to do with me of course!!). So now I'm off to bed as with the kiddies being up at 6.30 I'm pretty shattered....but very happy.

Here's to friends and to making the most of life with them!!!
xx

Under 50 with Myeloma

2010-06-18T09:12:00.000+01:00

I'm looking forward to today as after months of speaking to people online, I'm finally getting to meet a whole bunch of people that I met in the 'Myeloma Under 50' group. They seem like such a lovely bunch and it will be really nice to meet them all in person. We're all meeting in Wimbledon for a catch up with a Myeloma Professor and then on for a drink (or five by the sounds of it!!).

Was a bit worried yesterday as I've developed a horrid cough and have infected spots all over my hands....I thought I'd have to cancel meeting everyone as one of the things with MM is that people have a compromised immune system. But luckily they've all been lovely and said that they don't mind me going given that we're meeting in a pub anyway!

Anyway, have got a day of running round madly to make sure all the childcare is in place, etc and then hopefully will get to have at least a couple of G&T's before the cough takes over!

Who's the Winner?

2010-06-12T21:39:00.000+01:00

Well, having just watched a miserable opener from England in the football world cup, I thought I'd spend a quick 5 minutes updating everyone on where things are at the moment.

It's been a busy week on the fundraising front. My brother in law did a networking event down in Surrey and managed to raise over £500 towards his fundraising total...fantastic as he's now raised his £1000 target.

Then today I went over to my mum and dad's to help with a coffee morning for her church and my dads church. She'd had nearly £200 in donations before we started, but I was just gobsmacked as by the end she'd raised nearly £600...and there are cakes leftover to sell at her church tomorrow! Alongside the bring and buy sale she did, that means she's raised over £1600 so far. Definitely the winner of today!

It is just so fantastic...I think that before we take into account gift aid, the family will have raised over £10,000 for MMUK which is just amazing and will hopefully help raise awareness of Myeloma, as well as obviously contributing to valuable research.

My knee is so so at the moment. Wierdly, it seems fine in heels!! Maybe I should walk the 3 peaks in a pair of stilletos!!! With walking boots, I can feel it pulling so I think it is probably a hamstring pull or something. Someone has recommended me red flower oil which does help a bit so I need to remember to put it on a bit more regularly.

The bonus is that I'm still managing to do some walking.....I managed to do a 6 miler on Friday even if it was a little slower than normal. I tried out walking poles which I'm not sure about and made sure I stretched properly at the end. My knee is no worse than before so that is great!

Right, will go now to commiserate about a 1-1 draw with the USA :-(

Here's hoping.....

2010-06-08T09:59:00.000+01:00

Went on another 10 mile walk yesterday in the new boots that I had to get. Mine had come to pieces when I did my 17 mile walk so I've had to buy some new ones. It all went well at the time and I had no blisters from the boots (well and truly recommend Northface!!). Unfortunately my knee which has been giving me a few problems the day after a walk, started hurting and is now in quite a lot of grief.
I'm just off to get a knee support, some pain killers and apparently red flower oil is meant to be good. I'm absolutely gutted after all the training I have put into this event that I am in so much pain. I think I'll have to tone the training right down which has really upset me. I feel like I've worked really hard to get into the right physical condition and now I'm going to have to stop or at least only do really short walks. My priority is to actually be fit enough to do the walk and if that means that I have to do it in more than the 10 hours that I had hoped to complete it in, so be it, but I am well and truly gutted.
So if anyone has any hints and tips (other than paying out for a physio which we can't afford after all the equipment I've bought!)please let me know!!!

The good thing is that Nick has said he'll drive the minibus for us....I'm really pleased as it will be lovely to have him up there with us, supporting the whole group (ane me!!!).

Anyway, better get off to buy this stuff and hope that it all helps my knee to recover.

Bored and a bit down

2010-05-29T20:26:00.001+01:00

Firstly, I need to correct my previous entry. Talked about the person having had an auto....I meant an allo. Auto is when you have your own stem cells put back in after chemo, allo is when you use a siblings cells (or a donor I think). I still get mixed up between the two and hopefully it will be a long time before it is something so integral to me it rolls of the tongue!

Feeling a bit low today. But I suppose that's not bad as it's been some time since I did. I've been having some pains across my sort of collar bone region. They sort of come over me in waves and then go away and I feel fine again. God knows what is causing it. Hopefully it's all the walking I'm doing for my 3 Peaks, but who knows. It seems an odd place to get strains, unless I'm now walking with a very odd posture...could be that I suppose.

The silly part of me then gets scared that it's more ominous than that. Must remember to ask the consultant whether my protein could stay the same, but symptoms start developing none the less....i.e if my body gives up coping with the high levels of protein that are there.

I'm also feeling shattered at the moment. But that probably IS to do with the walking, having two kids under 6, and staying up too late. Can't blame SMM for everything hey (much as I'd like to! Esp the increased appetite!) Actually one thing I do think might have affected my energy levels, is the amount of rubbish I'm eating. I'd sort of given up on the dairy free diet, but I think I'm going to go back onto it. In fact the more I write this, the more I wonder if that is what has contributed to the ABSOLUTELY FOUL mood that I'm in at the moment. So, dairy free again from tomorrow and I'll update you on whether it works!

Anyway, will make myself perk up! Off to see 2 new babies in the family tomorrow, and then to one of my sisters on Monday for a couple of days. Hopefully being away will help and I can chill out a little.

Training is still going well....did a total of 36 miles in 8 days, and then on Friday did another 6 miles. My knee is giving me a little bit of gip but I'm hoping that it will calm down given I'll have over a week off between my last walk and my next one. Luckily it doesn't hurt while I'm walking, but instead the day after!! Don't care if it kills so long as I do the 26 miles required for the 3 peaks!!!

Now, I've had another music album recommended to me which I'm quite liking; Thea Gillmore. I particularly like 'Drunken Angel' although am not as keen on all the others....think I'd have to pick and choose!

Exhausted but happy

2010-05-21T18:26:00.000+01:00

Well, I am now that little bit further on my journey to the Yorkshire 3 Peaks and have just completed a 17 mile training session. I have to say I felt really good completing it but was definitely ready to stop at the end.....just have another 9 miles to add and then I'll be there....a doddle....not!!!! Not sure how many times I'll be able to fit in a walk that long what with the childcare costs but it was good to know it was doable and how fast we will need to walk....bloody fast!!! We did it in just over 6 hours today so it was just under 3 miles an hour. Sounds slow, feels fast.

The sponsorship has stabilised now but I'll go for it again in the run up to the actual event. I would love to get to £5000, and am really hoping with the sponsorship from the other people walking with me, that we might even get to £10,000! What an achievement that would be.

I can't remember if I talked about the lady I have met via an Under 50 website. She had an auto SCT (Stem Cell Transplant) in January and has been so ill in hospital. This week was a real boost to all of us on the site as she has got back to us and told us that while it was touch and go for a while, that she is now on the mend. There is a 25% chance of dying after an auto SCT so I think it brought it home just how big a decision it is to make. Hopefully that will be the end of the bad luck for her and she will be on the mend.

Right, better get off now, need to get those kiddies to bed and glam up for a night on the town....if I can walk!!!

Was there a UK power cut 9 months ago????

2010-05-14T17:53:00.000+01:00

Well we seem to have an abundance of babies at the moment. We'll have had at least 5 being born within the last 3 weeks...very gorgeous all of them so far and I'm loving the cuddles...and being able to give them back!

But it has made me stop and think. I always said Sam was my last baby. I've been so adamant we gave everything away! But I know that Nick has always hankered after more...funny really as when we got together it was him that wanted two and me that wanted more!! Recently I've really started thinking about it more with so many babies around and with lots of my bestest friends being pregnant. I do wonder if it wasn't for my diagnosis whether we'd be rethinking the decision to stop. But I feel like that would be really selfish now that we know. Even if Nick was prepared to take the risk of having to look after them on his own, it is about more than that. It is about what we'd put them through if I did get ill enough to need treatment.

I sort of feel a little sad about it at the moment. Only a little as I feel so grateful and lucky to have two healthy, gorgeous children already. I know that many people would give anything for that. But despite being about to get my life back when sam starts school in September, part of me hankers after that baby again (looking at Rebecca's baby photos didn't help!)

So, next time I'm looking wistful, just remind me that it has been 5 years of limited sleep, years of nappies, constant arguments and a limited life of my own...hopefully I'll snap out of it pretty fast!!!!

Bring it on!

2010-05-07T20:06:00.000+01:00

Election day, a huge day for this country, and a huge one for me. And I think that my appointment today has possibly been the bigger success of the two!!! I'm not going to get into politics on here but will share how my day has gone(how big headed is that???!!)

We are over the moon as my protein levels have gone down to 39. That's less than they were before the last appointment and I have to say that I put it all down to the curcumin I've been taking. Who know's if I'm right or wrong but it seems to be doing the job so it is worth every penny of the cost!!!! My consultant, despite still being a bit dubious about the whole 'alternative therapy' concept, even said that if I could provide him with bona fide research he would be interested in reading it! Result in itself as I think that he should at least be mentioning it to patients, even if he can't recommend it.

My haemoglobin levels are still dropping slightly (now 10.9) but he isn't worried about that even if it is Myeloma related. Not yet anyway! Somehow they forgot to do the calcium measurement but I declined the option to get it done again today and said we'd wait till next time.

It has been such a good day...I have just walked round with a permanent smile. I know it doesn't mean I'm getting better, as that just can't happen, but it does mean that I'm stable at the moment and it gives me so much hope. Every month that I get where I don't need treatment is just fantastic and means that the kids are an extra month older....I can't ask for more than that really!!!

I really want to take this opportunity to thank everyone who has been supporting us over the past year. It has been so tough at times, and at the moment we just seem to be doing really well with it all, and that is a lot to do with how great you have all been. We are now able to think more positively, whilst also knowing that people are there for us if we need it. And to all those people who are praying for us....keep it up!!!

I also want to say how much it means that people have supported my 3 Peaks Challenge. I think that has really helped me to be positive and to have a focus. Someone said to me today that I have just looked so much happier over the past couple of months and I think it is a lot to do with the walk, the training, and the generosity in people's attitude and sponsorship for the event. Next week, I plan to do my first 10-15 mile walk!!!

So bring on what is to come....we will fight it all the way and beat it for as long as we possibly can!!!

Who needs to walk 26 miles for charity??!!

2010-04-29T22:48:00.000+01:00

Wow, well I have to give it to my parents. My mum (and dad!) arranged for a bring and buy sale at their church in aid of Myeloma UK and my 3 Peaks Challenge. We'd hoped it would raise about £300 but they raised a whopping £900+!!!! How great is that? It will take my total to over £5000 so I am so so so so chuffed.

I can't believe my mum had said at the start that she would have liked to walk but just couldn't quite do it (not really surprising for a 77 year old!). Her and my dad have just been doing all they can within their churches and their friends and this just goes to show what you can achieve when you put your mind to it....a marathon walk obviously just isn't necessary (now if only I'd know that before I said I was going to do it!!!)

So mum and dad....if you read this, I am very very proud of what you have achieved today....thank you guys!!! Here's hoping it will all go towards valuable research and will help people in the future to live with, and hopefully survive longer with Myeloma. And who knows, perhaps it will help me at some stage too! We can only hope!!!

A year on!

2010-04-28T19:52:00.000+01:00

Just a note to myself as much as anything, that it was a year practically to the day that I gave that first 'adhoc' blood test. All for a sore throat which has never recurred since. It seems very wierd to think that I could have still been going on with the daily routine, not knowing that I have a potentially terminal cancer.

Hmmm, and which would have been better? Knowing you're going to kick the bucket earlier than you'd expected but getting the opportunity to be checked, looked after and hopefully treated early enough to give better chances? And to do all those things in life you keep putting off 'till the kids are older/leave home/get married'

Or living in blissful ignorance of the truth and only finding out when it's late in the day and potentially the symptoms are pretty awful.

I have to say, I don't think I can answer that question. And woe betide anyone who tries to tell me what the answer is!!!! I am grateful to have those opportunities to live my life with Nick and the kids in a more fulfilling way...and to make sure that friends and family know how important they are to me. And my scenario has definitely meant that I know how much they all love me....and that's not a bad thing to know! In fact, it's a pretty fantastic thing to know!! (And while I'm in the mood I just want to say to you all (and you know who you are) that you have been absolute rocks to me in the last 10 months and words can't thank you enough. I plan to stick around long enough to repay your friendship and support many times over!)

But I do wish that I didn't have this noose hanging round my neck just waiting for some sod to kick the chair away!!! Oh well, live life for the moment, think the best and all that stuff hey. I'm so positive at the moment that I feel like I'll live forever...and none of us are going to do that!!!

Right, better log on and do some work now.

Walking in Wales

2010-04-26T21:40:00.000+01:00

Well, my training is now well and truly on track!! Nick whizzed me off to Wales (my bday present from January) without the kids. It was so nice to get away and regroup for a few days. Nick and I get on so well when we're away from the house and all the everyday stresses....but then again, I'm sure most people do. So, we did nearly 7 miles on the Friday which was just fantastic. Then over to Conwy castle in the afternoon. Then the next day it was canyoning where I managed to get over my fear of low heights (I'm fine jumping out of a plane but jumping 6ft into a plunge pool scared the living daylights out of me!), and then a small walk in the afternoon. Sadly, we had to go and pick up the kids on Sunday, but I managed to bully Nick into a 3.5 mile walk first.

So that was all really good apart from it made me realise just how tough this Yorkshire 3 Peaks challenge is going to be. I'd thought it was the poor relation of the 3 peaks that covers Scotland/Yorkshire and Wales, but it seems that it isn't as there is more walking involved, just over a shorter timescale!!! So, home we came, and this morning I went for a 7 mile walk while the kids were at school. I have another booked in for Friday so hopefully I can keep it all up and get myself a bit closer to the 26 miles in july!!!!

Healthwise, I think I'm doing ok. Having a small blip at the moment and think I need to go to the doctor about a small problem which I'm hoping is just general and not kidney related. I'm sure it isn't to do with that, but hey, life wouldn't be the same without something each month to worry about!!!!

I give blood this week (probably Wednesday) in time for next Friday's consultant appointment. I have a good feeling this time so hopefully I'm right!!!

Sunny Sunday Afternoons

2010-04-18T20:48:00.002+01:00

I realised today that I hadn't written for ages. A bit like last time, I have to say that is good news for me as it means that SMM hasn't been dominating my life. It's taken 9 months, but I think that we're starting to learn how to deal with things a bit better. It's also helped no end having 7 weeks between appointments. I think previously, as soon as we've got over one set of results, I've had to start thinking about the next lot. This time, I'll have had 6 clear weeks between my appointment and my bloods, and then a further week before the appointment. It will be interesting to see if I get stressed in the week running up to the bloods/appt or whether I'm in an all round better place now.

Training has been very slow for my Yorkshire 3 Peaks and I feel really bad about that given how generous people have been with the sponsorship. But just as I was getting back into it, Easter came upon us and I had the kids all day. But this week it's all going to get going again. School starts Tuesday, and so does the training!!! I'm nearly at £4000 now....absolutely amazing. I've upped my target to £5,000 as I think that is pretty doable now. There's lots of money that I think will still come in so I felt like I should raise the bar!!!

I have to say, I continue to be amazed and humbled by people's generosity. Lots of people are doing coffee mornings etc which are great and they all lead to lots more for Myeoma UK. But I've had 2 things happen that I think are particularly fab. One of my best friends sisters, and a friend in her own right, has asked all her friends to give me sponsorship rather than presents for her 40th. I don't even know that I would be that selfless and both Nick and I were really touched. So generous. And one of my brother in laws is trying to arrange a networking event for all the businesses that he does business with in the hope of raising £2,000. That would be just amazing if he can pull it off!

So what else in the last couple of weeks, not much other than the usual Easter activities with the kids, Odds Farm, West Midland Safari Park, soft play areas, catching up with family and friends etc. We nearly lost Nick for a while too due to the Icelandic Volcano. He was in Romania when it went off, but luckily managed to get to Paris on the day and then finally got home 2 days later. Seemed like forever, but when you hear about all the people still stranded he's done well to get home. In the end him and his colleagues had a car drive over to pick them up and bring them back on the ferry (no foot spaces available!) but there was a slim chance of having to go via a Helicopter! Think he was a bit gutted that didn't come to anything!

So courtesy of my kind friend that I met via this blog, I am putting a new song onto here today. He has introduced me to Laura Marling who I have to say, I think is fantastic! Thanks C! (Sorry Anne, maybe another time for one of yours!!)

General Update

2010-03-29T16:46:00.000+01:00

Well, I thought perhaps I should write an update as I haven't for a couple of weeks....I sometimes think it shows things are going well with me when I don't write....it means I'm just getting on with life and not pondering too much on how things are going.

I've just had a really lovely weekend with my family. Nick was lovely and took the children away with him for a night so that all 5 of my siblings could come over for a dinner and to stay the night....it was such a great evening and even nicer as we haven't done it for far too long! We are so lucky to all still get on well enough to do something like this....I know too many families where small things grow into large feuds. I had been a bit worried that I'd drink too much and get teary, but I was in such a good place, and so determined for it to be a nice evening that we didn't talk about my SMM at all....well hardly!! It certainly wasn't a 'topic' which was great!!! I am so lucky to have such a fantastic family and I love them all very very much.

Nick and I have had a long chat about how we manage my fundraising for the 3 Peaks along with retaining some dignity and not sharing our life with the whole world (she says as she writes a blog accessible to anyone who wants to read it!!). I think I had become very wrapped up in just raising money and forgetting that actually this affects the kids and Nick as well as me. So it had all become a little too public. So now, we're going to just calm it all down and try to raise the remainer of the money a little more quietly. After all we're the first to say that we don't want people to see us as victims in this, so we need to lead by example.

I am so lucky to have Nick....and I don't always make that obvious to people. I love him ever so much and he is ever so supportive and loving to me and the kids. How he has put up with me over the past few months I don't know...but hopefully all of this is making us stronger and stronger together..I know he makes me into a stronger person - all you can ask for from your best friend and husband.

So moving on (before I'm far too nice about my beloved!!). I have been trying to get into more music recently and have been lucky enough to get back in touch with an old teacher of mine who has introduced me to a whole load of stuff. So as I find new songs I love, I think I'm going to post them up...maybe I'll aim for one every post...not that they will link to the post at all!!!

Good, Bad, or Average?

2010-03-19T13:20:00.001Z

Appointment day today and my readings have changed as follow;
Protein up 4 to 44g/l
Hameoglobin down .3 to 11.1
Calcium - back in the normal range (can't remember what exactly).

Strangely, my consultant seemed to think it was fine and not at all concerning. He didn't even seemed that bothered about when my next appointment would be...4 weeks or 6 weeks? The reason I think it's strange as when my protein readings stayed stable last time, he saw it as imperative that he saw me in 4 weeks. And seemed to suggest that it needed monitoring very carefully.

I asked him about getting my siblings tested for a Stem Cell Transplant (SCT) in case I need one at some point, as one of them is going to live in Beijing for 3 years. And he pretty much told me I was getting ahead of myself and was being ridiculous. And when I suggested that everytime I was ill, my levels deteriorated, and that this time it had happened, but not as badly, because in my view, of the curcumin I've been taking, well, you'd think I was talking to him with a yellow and blue monkey on my head!

So why he bothered to ask me if I had any pain in my back I'm not sure, as I was very much inclined to tell him where to stuff his question....not very polite I can tell you.

Should we change consultant? Well it seems like a bad idea at the moment because of the fact that he fits his diary around us which is great with Nick being away so much. And he is close which makes it easier for these 4-6 weekly appointments we're having. But if he makes me feel like he did today again, I will be looking to change.

Anyway, onwards and upwards....I have 6 weeks till the next appointment so I've just ordered another 6 weeks supply of 1g curcumin tablets (only a snippet at £85...uurrgghhh!!!) and am determined to prove to him that it does have an impact and is not just a new fangled idea sprouting from health food shops to make extortionate amounts of money out of us poor sods who will believe that anything will keep them alive for longer!!!

Ironically, Nick put some music on in the car as we left the hospital.....and changed it before I sat down....luckily...it was Ironic and Stay with me....the song that I'd sworn I was having at my funeral in my moments of doom and gloom.....but it made me laugh when he told me today. I'll try to attach it as I love the song!

Happy Vibes

2010-03-11T13:04:00.000Z

I wasn't planning on writing anything today, but I had an email from someone who has really helped me through my diagnosis in the last few months, and it made me realise that perhaps I'd left my last post on a bit of a low....and that maybe, I'd made it sound worse than it was. Well, actually, it was how I felt, but only for a very brief time. So for those of you that are reading this and looking out for me....don't worry, I'm ok!!!

I think I made it sound like life is a total struggle. It isn't and most days, it doesn't overwhelm me at all....only the odd day here and there....and that was when I last wrote. But I've been quite pleased on how this period has been better than last time. In fact, each time, I seem to have less emotional ups and downs than the time before....and am definitely able to pull myself out of them much faster. And here's hoping that I have many many years of getting better and better at being positive and seing the glass half full!! People do, so why not me.

So today is good! And all those good vibes are going all the way into that damned blood plasma overnight so that I get a good reading from my bloods which I give tomorrow :) !

On reflection....

2010-03-09T21:48:00.000Z

It's funny, I've been thinking lots about what people in my past are up to now. I've kept in touch with so many people....not one to drop friends me, but with everything that has happened over the past 9 months, I feel like I just want to see where people are and what they're doing.

The last few days have been tough....probably because I'm now in the run up to my next appointment. I think I've been so focused on my fundraising up until now that the last 3 weeks have flown by...sort of been working off the adrenaline. And then last week I just started to feel really depressed again....just really moody. No cause, not even overly sad about MM, but it did turn into that. Poor poor Nick!!!

I'm not sure it helped watching 'My Sister's Keeper'. I blubbed from 60 seconds in until the end. I mean, I know I'm emotional, but that was just ridiculous. But it was hard and made the idea of chemo pretty real to me. I am still not close to that, and hopefully won't be after next Friday, but I can't help at these times, but to worry a bit about what the future might hold. Everything people ask us to do, and I'm there wondering if I'll be well enough, whether I'll have started treatment, and when we're talking years ahead, wondering if I'll be lucky enough to still be here. There is so much unknown with this bloody cancer and I really hate it. I'm not quite sure what I did to have ended up with this on my plate, on our plate. But then I think perhaps I am lucky, there are people out there who don't have loads of family and friends to support them through this sort of thing....I do. The most amazing family and friends ever and I am indebted to them already.

I just hate this run up to giving blood and getting my results a week later. I wonder if the run up to the bloods is sometimes as hard...once that's done, it's all out of my control!

Nick's away this week....going to try to fill up my week so it isn't so lonely. He's got loads on so I really want to stay positive for him.

Anyway, chilling with a glass of wine now and looking forward to a nice day with Sam tomorrow....I might even take him to the farm for the first time in 2010!!

Lazy Sunday Afternoon

2010-02-28T15:40:00.000Z

Hmmm...got a lie in for the second day on the trot....thanks Nick!
The antibiotics have kicked in and I finally feel like I'm in the land of the living again (might still not look it, but you can't have everything!). I'm still a bit bunged up and a bit coughy but nowhere near what I was last week when I couldn't go 10 minutes without coughing madly. Now it will just be the waiting game to see whether or not it has affected my readings. Fingers crossed, no as otherwise I'll have to start thinking about how I limit contact with people who are ill. And that's not going to be easy with 2 kids! Anyway, might be getting ahead of myself here.

It's been nice to just have a chilled out day with Nick and the kids today....no-one to cook for, no-one to look after, just us :) I keep saying we should do more of it.....and then book up the diary....currently booked well into May...mad!

I had a look on the MMUK site yesterday....another story of someone who has lost their battle with Myeloma. I hang on to the fact that I don't have symptoms yet, but find it really sad everytime it happens. It makes me think of my family and how they'd feel. The site is fantastic though and the support you get from people on it is amazing....it's amazing how there are people that I have really developed an 'internet' relationship with via the site. I never quite understood internet dating, but have started to a bit better recently!!!

Fundraising is now up to nearly £1900 which is so great...I am over the moon. I'm sure that the last £1000 will be the hardest but I still have lots of people that I do think will sponsor at some point. I've just had an email back from my gym saying that they'll provide a trainer for me to set up a specific training programme for the walk and that they'll also look at doing a collection at the club. I am so chuffed by their response...after all I only started there a couple of months ago!

Right off to have a nice Sunday roast now....mmmmmm.

Sickly and nervous

2010-02-23T11:12:00.000Z

Urrgh. I've now had a cold since Friday which has developed into a hacking cough. I spent all last night coughing and ended up watching the figure skating at 4am in the morning as I just couldn't sleep! As good as it was watching the Canadians take gold, it wasn't really my idea of fun at that time in the morning. I went to the doctor this morning who has said he thinks it's just a cold but who has given me an advance prescription in case it develops.

It makes me really nervous. Last time I had an infection, my levels went up by 8 g/l.....and that starts to take me pretty high. Hopefully me having taken curcumin might help to balance that out and I'll stay stable, but I can't say I'm confident. I'm trying to ready myself for the worst whilst staying positive...an interesting combination!

I've upped my curcumin now to 6g...not sure whether the effects are due to that or being poorly, but I'm not sure I'll be going any higher unless things calm down with that too (see previous posts!!)

Oh yes, and the one bonus of going to my GP today, was that I managed to get an exemption form for prescriptions. I suppose there has to be some benefit from having the big 'C'! My eczema has definitely been worse in recent months and while I don't know that there is definitely a link, it's been costing me a fortune in creams!

Fundraising is now up to £1545!!! I can't believe it. I've upped my target to £3000 as people suggested I'd set it too low! So we'll see how that goes too. People have been so amazingly generous....and some of them really can't afford it but have still given.

Right, I need to go and rest until preschool pick up....my eyes are blurring in front of me!

xx

Humbling or what?!

2010-02-19T16:05:00.000Z

Well I have to say I am absolutely gobsmacked. After my announcement that I was going to do the Yorkshire 3 Peaks, less than 48 hours ago, I have already reached 40% of my target of £2000. I don't have to raise anything for this challenge, but I really want to be able to do something at this stage, while I still can. I cannot believe how generous people have been. It amazes me.
MyelomaUK have already supported me immensely with their discussion board and their website, so it is really important to me to help them. Maybe some of the research they fund will also help in finding a cure for this cancer. Those of us with it, can but hope.
So, if you're reading this and have sponsored me, THANK YOU ever so much. Nick and I are both really touched by your support and your messages of kindness. And if you haven't....there's still lots of time!!

Curcumin - hope for the future?

2010-02-18T21:56:00.000Z

I forgot to write in my previous post that I have now started on curcumin further to reading Margaret's health blog (see links to the right). She raves about this as having kept her stable for years now, and I have heard a number of other people saying that and fish oil are thought to have kept them stable too.
So, on the day I gave my last lot of bloods (5th Feb) I also started taking it. It's not cheap at £35 for a pot that will probably only last me a month, but if it keeps me stable for longer, it's worth every damned penny. Anyway, I started on 1g a day and am now up to 4g a day. Supposedly the recommendation is to go up to 8g a day next week, but I'm not sure whether I'll get that high. Without going into too much detail, it does have some side effects - I could well keep Andrex in business!!!

Anyway, today I found a link on the Myeloma Beacon about Curcumin too which I will try to attach shortly.
Myeloma Beacon - curcumin and multiple-myeloma preclinical studies
It seems that smaller research projects have backed up what individuals are saying, but because the population that has been trialled has been so small, it hasn't been deemed to be 'significant'. Blimey, anything surely is worth consultants trying out with their patients if it prolongs life/ quality of life.

I'll give it a go for a few months and hope that my readings stay stable....if that happens, I'll keep going!!!!

3 Peaks Challenge - July 2010

2010-02-18T09:02:00.000Z

Please sponsor me if you can!!

Chin thankfully up!!

2010-02-15T20:31:00.000Z

Well, I knew I'd be bad at keeping this up to date, and oh yes, I am being. Still I suppose that's partially good as it means I'm not totally preoccupied with it!

I had my results and latest appointment with my consultant on Friday. Thankfully no rise with my paraprotein with it staying at 40g/l - hurrah!! My calcium has gone back into the red slightly and my haemoglobin has gone down a bit (looks like out of the normal zone and into the red, but I can't quite remember what he said it was and am still awaiting my written confirmation).

BUT, I am still feeling really positive about it all. I largely need to thank someone I met via this blog who has told me that his levels rose to over 70, 3 years after diagnosis, and that he was still asymptomatic. What a result. I know we're all different, and that I may not be so lucky, but I really feel I have to hang on to that at a time where otherwise I would spend my waking days (and sleepless nights!) worrying about it all. If it gets worse quicker, I'll just have to deal with it then, but until that day, I'm going to try to keep positive and enjoy what I do have.

So since then, I haven't really stopped to think about it much. I think I'm going to tame my presence on the MMUK site and the Under 50 site too as that's becoming a bit too compulsive for me and I'm dreaming myeloma at night....not nice!! And not helpful when I'm managing to forget about it during the day!

Anyway, that's it for the update. Just finished painting the spare room ceiling so am going to sort dinner and collapse I think!

Night

Wait and see

2010-02-05T21:35:00.000Z

Ok well it's done now...next bloods given at lunchitme and now we just have to wait and see what they say next week. I have a positive feeling about this one....I don't know why but I think my readings will go down next time - oh how happy will I be!

Nick's home tonight after the week away....so lovely to have him back.

Weekend of decorating ahead of us...want to get the spare room up and running now that the kids have moved in together. Not looking forward to the sanding but can't wait for the room to be ready!

Feeling more cheery!

2010-01-30T11:42:00.000Z

Well, I'm feeling a bit more upbeat today.

Spoke with a counsellor through the bank yesterday who was lovely. She's the first counsellor I've spoken to who seemed to acknowledge that what we are going through is really tough on us. Everyone else seems to think I should just live life for the day and be happy that I have more time ahead...which I agree I should try to do, but is sometimes easier said than done. Anyway, I'm now signed up for 6 sessions over the next 6 weeks over the phone (otherwise I would have had to go to Hemel) which I hope will just help me a bit. And the good thing is that it will cover the run up to my next appointment, and the period afterwards.

Nick and I also had a really good chat last night. He explained a bit more of how myeloma works. I've found it really frustrating that I don't really understand the readings and what is happening to me and he just helped clarify it a bit better. We went over my readings (that had finally been sent through by the hospital) and he explained them a bit to me too. We agreed that perhaps now was the time to get a second opinion so that someone can clarify it all to us, what we're waiting for etc. Dr Aitchinson is a lovely man, but he doesn't really help me to understand it all. And I need something that I am in control with.

So today we're having a lovely day with the kids, taking them swimming and one of my best maties from London is coming over for the night....have a feeling there may be a few tears, but am hoping that I'm a bit more settled....dono't want to scare her from coming again!!!

Grump, grump, grump.

2010-01-27T12:47:00.001Z

It's been a really tough few days and I feel absolutely exhausted from it all.

After my last appointment, Nick went away from the Sunday till the Friday....all was good until about the Wednesday when I just started to feel really low about what is happening to me...to us. I kept it together until the end of my bday on Monday when I just broke down on Nick and sobbed and sobbed about what is happening.

I'm just really scared at the moment. I'm scared of what might happen to me if I get ill, how much it will hurt, how much it will stop me from doing things, how much it will affect my relationship with the kids and Nick. I'm scared of dying young and leaving the kids with no mum...Nick will manage...he's too practical not to just get on with it, but if I leave Sam and Rebecca at a young age, it will really change their lives.

I just feel so guilty at the moment for having got this damned prognosis...it has turned our life upside down, and that of those around us. I'm finding it really hard to live for the moment and to be positive this week. Part of me wishes I'd just got run over by a bus...at least then it would have just happened and the kids would have been young enough not to be caught up in a cycle of hospitals and illness.

Bloody disease. I don't know why it had to be me. It's not that I can't or won't cope with the illness or the early death, I just don't want my kids or Nick to have to cope with it all. I wish that I could just run away at the moment and leave them all to get on with their own lives. Nick told me he would never forgive me if I did though. Luckily I'm too much of a coward for it, but I can't say it hasn't crossed my mind recently.

So, somehow I need to get more positive about stuff again. Hard with the next blood tests a week on Friday, and the results a week after. But then again, how stupid will i feel if it is all ok at them...what a waste of 3 weeks of misery.

Sorry it's been a bit of a depressing one today. Will try to be more cheery next time!

Some Good News!

2010-01-21T22:26:00.000Z

I have had some lovely news tonight which has taken my mind off my own problems! One of my best friends called me to say that she was 14 weeks pregnant...fab news...been a tough ride for them so I'm even more happy that they have got something so lovely to celebrate.

I really am over the moon for them...I get so excited now when people have good news. I need all the good things I can get to in order to keep positive! Babies are a tad wierd in how they make me feel...I feel so lucky that we have two lovely kiddies. They are the best thing that ever happened to me (other than the lovely Nick of course!) and whilst they keep me on my toes, they really are pretty damn good kids! I knew before my diagnosis that I didn't want any more (or at least I was pretty sure!), but once I'd had it, the idea that it was no longer a choice was a really strange thing. I find it hard sometimes to think that now something else has forced that decision - Nick had never wanted to say never to more kids, now he has to (with me at least) and I think that's quite hard for him.

So now, my aim is to love what I have, and to give my friends and family lots of love to their kids too. No point being sad about it.

Oh yes, I think I mentioned before that I was trying to find out if my being ill and on antibiotics might have affected my readings....apparently not :(. Ke garne as they say in Nepal (What to do?!) Oh well....onwards and upwards and lets hope that the 12th Feb brings better news - or at least that I'm stable.

Had a funny (tongue in cheek funny!) conversation with a friend last night about planning a funeral! Decided that I think I want to go out to 'Always look on the Bright side of life' by Life of Brian. Hmmm....not sure what Nick would think to that conversation. But you have to laugh about it! I think I always think more about these things when Nick is away....he's been away since Sunday morning (today is Thursday) so I'm definitely missing him. Been a tough long week but I feel like we're in a really good place with each other. Home tomorrow...hurrah!

Gutted

2010-01-15T20:00:00.000Z

Well I had my next consultant appointment today and sadly it didn't go quite as well as I had hoped it to. My protein went up from 32 to 40. This is 4 higher than the highest reading I have had so far, and has just scared the living daylights out of me.

I need to put it into some sort of perspective but it is hard. The consultant wants to see me in 4 weeks. Up until now he has been skipping between 6 and 8 weeks with the hope that we could extend it. So for him to make it 4 weeks scares me a lot. That along with the fact that he mentioned the chemo thing too. Not to say I would need it but to say he wouldn't put me through it unless I started becoming symptomatic or some of my readings like haemoglobin, calcium or kidney function became worrying. It was like he needed to quantify things this time. Didn't like it at all.

I got home and just blubbed. I'd held it together since the appointment but then it all just hit home. After my last appointment where my readings had gone down, I had been so positive. I'd really thought I could view it all as being stable. Maybe I had years ahead of me where I didn't even have to deal with being symptomatic. But now.....who knows. Back onto the waiting game.

I'm trying to find the positive. Perhaps it was a blip and will go down next time. Perhaps the antibiotics I was on before the blood tests have impacted the reading. At least my next appointment being in 4 weeks means I will get an answer to all of this on the 12th Feb.

The bonus is I'm sort of ok now. Before it was taking me days to get over a less positive result, now I'm already feeling better.

I joined a gym this afternoon....maybe if I can throw myself into that and eating better, I can fight this damned disease all the way. Maybe I can force those readings down. I sincerely hope I can. For Nick, for Rebecca and for Sam. And for all the rest of my family and friends who are watching me through this. If you ever get to read this, I love you all to pieces. I am so lucky to have your love, support and friendship and don't ever think I take it for granted.

I'm off for a glass of red now....I think I deserve it!

Let it snow, let it snow, let it snow!

2010-01-07T12:39:00.000Z

Well I'm sitting at home today in peace with the remnants of 18cm of snow from yesterday! I have to say, despite lots of bah humbug comments from me on facebook, we took the kids for their first sledging experience and we all loved it! It was great for me as I'd not wanted to do it (hate the cold!) but once I was there I just loved it....and loved having fun with Nick and the kiddies. Rebecca thought it was mega cool going down fast, and even Sam enjoyed it when he stopped winging!!

Note to self after it....1. make sure I do lots of fun things 2. Stop making excuses as to why I can't do fun things 3. Stop thinking that the time might come when I can't....it hasn't and hopefully it won't!

Hope you enjoy the photos from it!

Christmas 2009

2009-12-29T22:16:00.000Z

Well I hope that everyone had a great Christmas!

I had well and truly been expecting to...goodish results, feeling very unworried, what on earth could go wrong?

Well other than a few disasters with snow, lack of heating, electricity etc everything was going ok and I felt great about the run up to Christmas. Then on the 23rd we got the great news that my little great niece had been born 'Isla Skye Louise Ratcliffe'....lovely news in the run up to Christmas! Which set me off!!

I hadn't for one minute been expecting it....I'd thought I'd be fine until the run up to my next appointment, but when I was told she had been born I just couldn't stop sobbing! A total mixture of absolute happiness for them, and absolute terror and sadness that I might miss some of my other nephews and nieces having their children...which is madness given I haven't even been fully diagnosed yet! So the day continued and I'd be fine and then tell someone my good news (and then start sobbing again in private!!)...silly sod that I am!

And so it has continued. Christmas has been hard this year. As much as I have tried to be positive and not make Nick treat it as my last 'normal' Christmas, secretly it has really worried me and made me really sad. But when you can't admit to your irrational feelings, it is hard to then have the time that you really want as no-one understands what you're feeling. Urrggghhh!! So the last few days have been a bit of a nightmare, one that I have compounded by taking out my frustrations on Nick, and him, I think perhaps burying his head a little and thinking that none of this is going to become real for us. I owe him a big apology though (something I'm not very good at!!) for being such a miserable cow. There was me telling him where he was going wrong, and I wasn't exactly the innocent in it all.

It all seems like such a waste. I wanted such a special Christmas for the kids and us, and it hasn't been that at all. They are such lovely kiddies, and yet sometimes I think we take out our frustrations on them as they can't really respond at 3 and 5. I love them to pieces and would hate to think they would remember me for being a grumpy old nag....perhaps I need to do something about that...help needed!!! Maybe I can try harder in 2010.....there's my resolution for the year!!

Off I go now to try and get some sleep in the hope that I'll be a little less irrational in the morning!

Nite
xx

The Background

2009-12-13T21:28:00.000Z

So how did it all begin...a few coughs and colds that I'd got fed up with! So off I went in April 09 to the docs who slightly reluctantly offered a swab and a blood test. The swab came back clear so I never chased up the bloods...until I came back from a great holiday in Portugal with Nick, the kids and our friends and godchild to a letter asking me to go and see the doc about my blood test.

So off I went and was told that I'd got the protein levels of a 60 year old and been referred to the haematology department just to check it out. Well, I knew I felt old after 2 kids, but didn't expect that! Within a couple of weeks Nick and I were making our way into the hospital to the 7th floor. I remember so clearly walking to the lifts and seeing the phrase ' 7th floor Sunrise Cancer Department' and just bursting into tears - no-one had suggested cancer to me!!

The consultant told me that he wanted more blood tests run, xrays done and a bone marrow biopsy. I was so lucky in some ways and everything moved so fast. The long and short of it was that in July 09 I was told that quite surprisingly at my age, I had Smouldering Myeloma. Not quite bone marrow cancer but it might as well have been for the way it has turned our life upside down.

So what is Smouldering Myeloma. Well, sadly it's not quite as sexy as it all sounds! It basically means that I don't yet have bone marrow cancer but that I have pretty high odds of developing it, probably within the next few years. Myeloma is a rare form of cancer. It typically affects people aged 60 and over, and is rare in people under the age of 40. It affects more men than women. Blimey I feel damn unlucky! A 34 year old female with it isn't the most common thing in the world!

What stops it being classed as Myeloma is that, as of yet, I don't have any symptoms. What are the symptoms when they occur? Hmm where to begin, bone pain, bone lesions, broken bones, kidney failure, anaemia, night sweats, bruising, bleeding, spinal cord compression and lovely things like this! So in lots of ways I'm so lucky to be where I am now. I get 6-7 week appointments to check my protein levels so if things develop they will be quick to spot them - which is great in so many ways.

But without wishing to winge, it's quite hard as well. I feel like I'm now living with a ticking time bomb...when will we get that bad news? When will I have to start treatment? Will the kids be old enough to remember me as a healthy mum and not one who is constantly sick or in hospital? It's now7 months on, and we're getting better at dealing with it all and not letting it take over our every waking moment....but it's tough at times. And people saying that none of us know when we're going to die and that I'm lucky to get the warning ....well I'd quite like to tell them where to go!! When they have experienced living with being told that you are likely to die of cancer before the age of 50, then they are welcome to express that view! Moan moan!

So anyway, I thought that I would start this blog. And I don't apologise now for the content of it, the language I might use, or any flippant comments I might make. This website is predominantly for me to write things down...at this stage, I'm not sure I'll share it, but if I do, I hope you'll view it as me allowing you into my most private thoughts and forgive me it it offends you at times.