Friday, 24 June 2011

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 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 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 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 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


  1. Can you get both? I think the short one is quite charming and mod, and the other is perfect for being 'parental' and curves around your face making a lovely frame...

    Perhaps you need to ask Rebecca what she was imagining when you said "wig," and you may find that she was picturing something closer to Rapunzel!

    Anyhow, it will get sorted out and I am going to continue intending that all is progressing very well for you and that your medical team is doing everything to bring you through this correctly so your MM can be put into maintenance, or better, CR! This is for the highest and best good of all concerned, so be it and SO IT IS!!!

  2. I really like the first one though neither look wiggy. I didn't wear mine at all but then I didn't have two little ones to take into consideration.

    Oh and thanks for the biopsy instruments pic! Really, I'm having another one on 5 July and have only seen the items in question from a distance - I am of course dismissing them as being nothing like the ones used on me as ours have blue handles! ;D

    I seem to remember you commenting on my blog (a while ago) asking if we were treated at the same place but I go to the Royal in Liverpool. We have professors north of Watford too! ;D

    Best wishes to your Mum generally and also for a speedy recovery. xx

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  4. I would go with the first one. It's quite charming.

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