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

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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

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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

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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

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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…..

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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!!

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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

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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)

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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.

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