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