Thursday 10 June 2010

It has been a long time since I went to hospital and an even longer time since I've posted anything on this blog. Understandably my readership has dropped to zero. It is now just over five months since I stared my chemotherapy; four since I last left my isolation room only days later becoming a father.

Little Emma has helped life get back to normal very quickly. I frequently go for days without thinking of leukaemia, chemotherapy, blood tests, and neutropenia. Nappy's, baby milk and a never ending quest for a full nights sleep now take precedent. The one constant reminder is the daily pill intake which has become so normal it is like popping vitamins in the morning. At a rough count I think I've taken close to 500 pills since the beginning of the year. I appear to have suffered no real side effects, my liver is holding out, and the once massive stock of pills has now dwindled to the tail end of a lone blister pack and a few chalky tablets rattling around the bottom of a large bottle. Today I was hoping to officially end this daily ritual and begin to enjoy an even more normal existence.

Apart from routine visits to the hospital for Emma's sake I have only been back once on my own account. On that occasion bloods were still low but on the normal route to recovery, there was so little of note that I did not bother to post anything here as it would have descended into a rant about my continued bemusement that a clinic that starts at 2pm can already be running an hour late at only 2pm. The oft touted excuse being that they are over booked, which I take to be another way of saying they are terribly under resourced. The staff that they have are brilliant, but they clearly need a lot more.

I awoke today with a sense of nervousness and worry. Not for anything in particular as there was only a blood test in the offing, more just a feeling that I was being dragged back to reality. A reality that I had worked hard to forget or at the very least ignore. Over time you do accept the diagnosis and over time you just learn to live with it; I assume its the same with any disease. I guess if I am honest its a form of grief, but oddly a grief for one's self.

Repeatedly going to hospital at the beginning of the year was a bit of a roller coaster ride in the sense that I just had to hold on and go along with it. It was easy to detach myself from it because it all seemed so unreal. Going back after such a long break brought back not the surreal atmosphere of endless blood tests and isolation rooms but oddly the feelings of the week when I was first diagnosed. Loss; depression; anxiety.

After a morning of work with butterflies flitting around my stomach we made our way as a family up to the hospital. Bloods were taken as usual and we made our way to the waiting room. It's one of the oddest places to be. Other parts of the hospital seem to bustle where people have to wait. You can pass areas full of people with legs in plaster, kids being corralled together so as not to get in the way of old people being pushed around in chairs, relatives lost trying to find a particular ward, or having been to a ward, their way to the exit. There's a certain hubbub about most places except that is the cancer wing. The waiting room is always silent in spite of the fact that there is usually only standing room; the thirty or so chairs all taken. Everyone knows why they are all there. They all have something massively life changing in common, and yet in a terribly English way no one mentions it. No one says a thing.

The silence was only punctuated today by occasional squeaks and grizzles from Emma. We are both thankful that she didn't fart. For such a small girl she can make quite a thunderous noise when it comes to air dispersal.

The room is populated mainly by elderly people who you know now know what it is that is likely to see them off. Interspersed amongst the crowd are obviously much younger people, myself included, who look around and wonder if they will ever be so lucky to ever be so old. It is a very solemn place.

Eventually I was called and was seen by a consultant I hadn't met before. Clearly they are slowly increasing staff to meet demand and he was a bright friendly guy. He knew my history without pouring over his PC and even said "Ah you must be Emma" as my wife carried her into the room with us. You had to hand it to him he'd clearly done his revision.

My bloods from today are, apparently, pretty much normal including the levels of white cells particularly hit by chemotherapy and an indicator of bone marrow health. Not much more could be concluded though without the dreaded BMB which he would have reviewed today were it not for the fact that the bone marrow extraction has been scheduled for two weeks after this review meeting.

And so it was we returned home. I am still on the antibiotics and antivirals while we wait to see what the bone marrow can show with regard to recovery. The pill popping is to continue and I have a new bag of drugs sitting in the kitchen along with all the other breakfast items. I've opted for a general anaesthetic for the biopsy in two weeks time. I know it sounds chicken but I've had it once before without the aid of sedation and whilst I am sure it is not the most painful thing a man could endure it is staggeringly uncomfortable and I think I have had my fair share of suffering this year. Besides I could really do with the sleep.

4 comments:

  1. Hey there:

    If I could the bone marrow biopsy again, I am telling you I would make them knock me out.. I went back to work after it and I broke down in my cubical...It was a very emotional experience for me.. I am with you.....

    Take care

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  2. Hola!!

    Pasó mucho tiempo desde tu último post y en verdad me había preocupado.

    Qué bueno es tenerte de vuelta en el blog :)

    Espero que te encuentres bien, saludos :)

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  3. Hello Richard,

    How lovely to see your update and I am so glad you have managed to enjoy the first part of Emma's life without too many hospital appointments. There's nothing quite like a baby to transport you to a different reality!

    Good luck with the biopsy. I am with you on the general anaesthetic - who wants to be awake for that kind of thing?

    Thinking of you and sending your whole family lots of love,

    I-Cheng
    xxxxxxx

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  4. Great to read an update - I check back every so often and still smile to see a brand spanking new Emma in all her 'birthly' glory. Ok I know that's not really a word!

    My colleague's 30 year old son recently was diagnosed with acute lymphoblastic something or other type leukaemia. His only hope is a bone marrow transplant and they are currently tissue typing his family members. Knowing that you've made it through your ordeal this far is helping me to support her. Can't let go of that hope.

    Glad to hear you are all enjoying family life. Wish I could come and visit! Stay happy and well xx

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