New Blog Address

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

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

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!

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

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

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)

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!

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

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

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 ....

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

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

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

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

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

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

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!!

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......

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

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....

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

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?

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

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?

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

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

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

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

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

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!!