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.........