The Decision

Yesterday, I had my clinic appointment when the dreaded stem cell transplant (SCT) was discussed. Big Sister came because she is a stem cell match to me, but more importantly, because sometimes, I need a little bit of support. Big Sister was great, she asked most the questions and took notes. I just said ‘yes’ quite a lot and talked about my favourite subject, my bowel. I found out afterwards that Mamma Jones had also provided a typed list of questions. I think they knew I would forget to ask.

After much discussion and facts, I have decided to go ahead with a transplant using my own stem cell , over going with my sister’s. I say decided, I was strongly influenced by the Medically Trained People to go with this option at this point in time. I’ll be using these terms a lot, so take note, my own transplant is called an Autologous transplant, and a donor transplant is called an Allogenic. Auto or Allo of short. So, I am having an Auto.

Prior to my appointment, I had done some research into what both procedures entail, and I would say that I am reasonably prepared for both. Though, at the moment, I am more at ease knowing that the Auto does not come with a 10-40% mortality rate. I also know two people who have known me since I was a greasy, obese teenager, who have been through it personally. My friend Rachael, in fact, came round shortly before Christmas and told me about all the side effects and how it was for her Dad when he had his. Basically, all the negative stuff: the vomit, the hair loss, the shitting, the weakness. This knowledge has been invaluable (apart from stem cells smelling like sweetcorn, I am forgetting this, for it is my favourite vegetable), and thus I do not feel like I need to know anymore about it. I do not need to know how long I’ve got before it comes back based on how long others have had, and I do not need to know how others have managed. It may sound selfish or ungrateful, but My Myeloma is my own and I am prepared for what is going to happen next, I have a plan on how I am going to do it and thus knowing more will only confuse the matter. That said, I still have some reading to do, just so I know how it will work at UCLH. Indeed, I was given a whole stack of papers about it yesterday and I have one document called ‘A Guide To Autologous Haematopoietic Progenitor Cell Transplantation’, it is a page turner to be sure.

20130110-175603.jpg
A whole stack of papers

I was somewhat disappointed that the provisional timescales I was given last week and before Christmas were slightly different to the ones I was given yesterday. I am sure a week or two does not mean that much to the Medically Trained People, but it means a great deal to me. Where I had thought that I would be out of hospital by the end of March, it will now be the end of April, and where I had thought that I have four weeks before it all starts, I have six. Six weeks of waiting. I want to get on with things, and these added weeks just prolong the matter. Anyhow, it is what it is, and I am getting over that disappointment. Flip the coin and it can be six weeks of quasi-fun. My next dose of chemotherapy is on the 16 February and until that date I am treatment free. There are tests to be done and appointments to be had, but nothing that is going to make me feel more tired than I am usually.

Crucially, I and the people who love me, have to be realistic about the procedure. I am sitting on a paraprotein level, which the Medically Trained People think has plateaued. It is still high, and I should not expect it to be completely gone after the SCT. It may go, but in all likelihood, it’ll just reduce. I am told that it can reduce to a manageable level where I will be able to just get on with my life and be normal and if that is not the case, I have the option of the Allo or a combination of the two, or whatever else they want to throw at me. Nobody knows the answer to this one until it is done.

For the time being, I await with anticipation the SCT and possible end of this current chapter of My Myeloma and that is all that needs to be said. Obviously. I’ll let you know more about the procedure closer to the time, when this confidence has dispersed or, when I have run out of other things to say. Which ever comes sooner.

My name is Emma Janes Jones and I am having a Autologous Haematopoietic Progenitor Cell Transplant.

EJB x

Advertisements
Tagged , , , , ,

3 thoughts on “The Decision

  1. Jet Black says:

    Given what you’ve said about it being your myeloma and doing it your way, I won’t say anything about what I went through, but if you ever want to know, check out my blog last August. In the absence of sharing my experience, I’ll just say “knickers”… lots of them! And good luck fellow traveller! x

  2. And I will be one of the cheerleaders, shouting encouragement as you leave the starting line and head off to whereever it is your myeloma is taking you… you can depend on more than just me to pop in with encouraging words, ideas, tips, and jokes once in awhile… I am sure of it!

  3. dear emma,

    i am glad the DECISION is finally made! good for you for your determination to live your own story – there is an art to living with myeloma (my husband’s, as well as breast cancer, mine) and it is to learn to establish your own realities, how you wish to handle it for YOURSELF day to day, how you wish to live for YOU, and find the way to own it. sometimes we have other realities thrust upon us by prognosticators. percentages, and graphs. fuck those. just keep living emma’s way, and keep writing through it all!

    love, XOXO,

    karen, TC

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: