Saturday, 27 April 2013

The Real Rock And The Hard Place

I wrote this post on Wednesday 24th April - just like the last post, I needed some time and space before I shared this part of my journey with you

So it would seem that being infertile was the least of my problems. I have just had my appointment to discuss a bone marrow transplant. They are looking at giving me cells from umbilical cord blood and there is a potential match available. Good news over. I didn't realise how harrowing the process was going to be. The actual transplant itself isn't bad, it is just like a blood transfusion, it is just everything else. The purpose of the transplant is to give me a whole new immune system. A week before they give the transplant, they will give me a week of chemotherapy and radiotherapy. The purpose of this is to give the transplant the best chance of adhering to my bone marrow. After they having given the transplant, I will be incredibly vulnerable to infections, more so than I am now, and it is for this reason that I will be kept in isolation for a month. It is highly likely that I will get infections during this time, which will have to be treated aggressively. Other likely side effects include vomiting and diarrhoea, and the transplant rejecting my body - because I am getting a whole new immune system, this immune system could decide my body is foreign and it will then attack all my organs. As well as the risk of other cancers developing, other long term side effects include, debilitating diarrhoea, recurrent infection, infertility and early menopause and relapse of the cancer.

Get ready for some statistics, there are some shockers:

Best Case Scenario

Chances of cure with transplant: 60%
Chances of cure without transplant: 30%
Chances of death during transplant: 20%

Worst Case Scenario
Chances of cure with transplant: 30%
Chances of death during transplant: 60%

I am currently in the worst case scenario category due to the complications I have such as the Infective Endocarditis. Sobering statistics aren't they. There is also a chance that I can relapse within the first three months of having a transplant. If this happens, it will mean that my condition is terminal. However, if I reach the two year mark without relapsing, it is unlikely that I will relapse with this particular cancer in the future. The hope is that, by the time it comes to having the transplant, I will be in the best case scenario category because my current complications would have resolved and hopefully the genetic abnormality that is causing the cancer would have gone.

So I don't really know what to do. I have a month to decide so I guess I need some time to think about it, and I need to see what happens with the results of the bone marrow biopsy and the infection. I was trying to think about what scares me most about this whole transplant process. There are lots of things, mainly the long term side effects. Dying during the transplant doesn't scare me, it is the effect that it will have on my family and friends that does. Even though I would hate to have chronic pain and disabilities, the thing that scares me the most is that I would become bitter as a result of it. I know that must sound strange, but I guess  what I've realised is that the thing that makes life bearable, whether you have life catastrophes or not, is joy. If it wasn't for knowing God, I would have no joy, I would be a bitter old hag. 

To be honest, I don't know what to do. I think that if my risks move more in line with best case scenario then I will have the transplant; if they stay the same as they are now then I won't take the transplant. But I am really unsure; all I can do is pray for clarity. The future seems very scary and the storm that I thought couldn't get any worse has risen to the challenge. I hope and pray that there will be a turning point, an end to this sickness in this lifetime. Even though my life seems like such a mess, I know God is looking after me. Whatever happens, I will trust Him.


  1. Stari my thoughts and prayers are with you - the way in which you are dealing with these circumstances is inspiring. Many I feel could learn a lot about the need to discern their situations whether 'good' or 'bad' in order to get the most out of them for personal development.

    Perhaps one of my favourite quotes from the book 'A Mans Search for Meaning' is:

    “If there is meaning in life at all, then there must be meaning in suffering.”
    ― Viktor E. Frankl

    I wish you all the best.

    Josh Scanlon x

  2. Hi there Stari, my sister Roxana shared your lovely blog with me and I have been reading it for a few weeks now. I just wanted to say that I think you are incredibly brave and a real inspiration. I cannot imagine how you must be feeling and I am so sorry that you are having such a tough time but I just wanted you to know that you are in my thoughts and you're an exceptionally good writer. Love Beeta xxx


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