Wednesday, 24 October 2012

I'm OK everybody.

Hi all,

I know some of you are concerned about me as I haven't updated the blog for a week so I thought I ought to give you a brief update to let you know I'm still OK.

There is no doubt that this phase of treatment has hit me much harder than the previous phase and it has certainly knocked the stuffing out of me. It has left me feeling tired most of the time, nauseous and sick some of the time, and for the past three weeks I've had almost a constant headache. Consequently most of my days have been spent drifting in and out of sleep due to feeling exhausted and to help pass the days avoiding the pain or sickness I have felt at times.

My energy levels are low anyway as the chemotherapy is designed to inhibit the overall function of my bone marrow as well as attacking the cancerous cells within it. This not only slows down the production of my white cells which have been affected by the Leukaemia but also slows down the red haemaglobin cells which are vital for carrying the oxygen around my body, and the production of platelets which help my blood to clot. As a consequence during this stay in hospital, which has been two and a half weeks so far, I have had three blood transfusions (six units of blood in total), and two transfusions of a unit of platelets. I'm also due to have another unit of platelets before my final lumbar puncture tomorrow.

The stay in hospital is becoming monotonous and tiresome and on many occasions I find the highlight of a morning or afternoon is when the meal trolleys come around and I get something to eat - when I've felt up to eating that is. In between those times I've plugged in my headphones and laid back on my bed listening to music, trying to shut out the sound of what is going on around me which helps me to sleep. At times I've actually slept through the morning or afternoon snack rounds and missed out on a drink of tea, or hot chocolate, and have sometimes found the nurses struggling to wake me from a deep slumber in order to check my blood pressure and temperature when they do the obs rounds.

What keeps me going is the knowledge that for the time being I am rid of the Leukaemia and the treatment now is to make sure it doesn't come back. So whilst it's tough going I have to try and keep my chin up and keep going, for all that it is difficult on the days when I'm feeling rough and tired.

I have only a few days of this phase of treatment left and will receive my last dose of intra-veinous chemotherapy on Monday, after which I hope to be discharged later in the day so that I can be home for Tom and Sam's 11th birthday which is on Tuesday. I keep reminding the doctors each day to make sure they don't forget that as long as I'm fit enough I want to go home on Monday afternoon!

Beyond that I don't know what the next stage is. I did ask the consultant whether there might be an opportunity for a break to let my body and my senses recover before they attack me again. Unfortunately the answer was probably not much, as the strain of Leukaemia I have is very vigorous and any opportunity my body has to recover also gives the Leukaemia an opportunity to recover and reinfect me, so it doesn't look like a long break will be on the cards.

Either way I'll be grateful of a break at home even if it's only a few days, but have to face the reality that very shortly the next phase of treatment will kick in and once again my body will be punished with more chemotherapy and the like.

Things are improving though and I'm certainly not feeling as rough as I did when I first returned to hospital, when I must have looked like death warmed up. But I'm by no means as chipper as I was through the first phase of treatment when at times I felt better than before the treatment started.

At this time I'm afraid the blog will not be as regular as it was when I started, largely due to the fact that the monotony of the hospital stay gives me little to write about and that on many days I just don't feel up sitting up in bed and writing. I will try and update when I can, particularly as the milestones in my treatment are reached and passed.

All the best everyone and as always, thanks for reading.


  1. Hi Steve, as intersting as your blog is dont worry about us lot. If you need to sleep or are not feeling up to blogging then dont, we all understand and we would rather you get better than worry about us lot.
    I am finding your blog fascinating and I am sure it is the same for everyone else.
    Please keep us informed but only if you feel up to it.

    Best wishes
    Colin :)

  2. Hi Steve.

    Great to read your blog and I can truly empathise with all you've been through and with what you continue to struggle. I hope all readers of your posts who are going through similar vile circumstances can gain hope and courage from your very well written documentations.

    Best wishes to you and your family.



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