Wednesday, 4 June 2014

What's next

It is 3am, I am not sleeping, and I am laid in an hospital bed. I have forgot how hospitals have a special way to see how you deal with sleep deprivation. I have had a infection in my picc line. A picc line is a tube that has been dangling from my arm that feeds chemo near my heart, and for the past 3 months this line as made it possible for me to have chemo without injections once every 2 weeks. Then just before my last chemo this has happened. 

I'm feeling ok now, but yesterday my temperature was up to 39, 39 is fever. Yesterday I laid in the hospital bed with my eyes at the back of my head acting like I should be in A&E on a Saturday night. When your temperature goes up and blood pressure goes down, you basically act pissed. Which when your temp falls back down and your blood pressure goes up to normal and you're back in the room, it can be slightly embarrassing when your not sure if you have been swinging on an  cancer patient next to you while trying to organise a singalong in the oncology department.  "Come on everybody! Always look on the bright side of...".  I apologised to the nurse, which, luckily I was told I had nothing to apologies for. Later on Rob told my that the only thing I was organising was the structure of a sentence, which I failed. 

As for the side effects, my hands and my feet feels a sensation like pins and needles, and also numb. I was told that after the chemo, feelings may come back, but also they may be permanent damage, not great if your playing Twister, but great if your trying to get away with the washing up.

So, my last chemo is coming, the tumour I had has been cooked and destroyed using the new treatment in London.  My doctor as told me I am his first patient that as had it, and let's see where we stand in 3 to 6 months, so what next, scared about the future? Well, I guess a little, but then I think about what I want to do.

And then I'm buzzing with ideas! 

Those ideas, I have already started to plant, and I'm sure that's another blog post.

I have always wanted to write about things I have learnt during this process as I know what is happening is, I guess is rare. But due to my brain been fried with chemo I know I haven't got my faculties to be eloquent, to be fair who am I kidding I have never been eloquent! Also I am conscious it may come across as been slightly pretentious. I have had THIS 'rare' experience so I know better!  I don't think I now know better, but I do think I now think  differently. But to say I now think differently, does that mean?   I now know better? No, due to me being still alive, I am also still learning.

So, the future? Well, I really don't know! I can use percentages and live scared, but two years on, I don't use percentages or probability anymore, so with that, I have only one thing, and that is the present tense, and personally that's not only magical, it's powerful. To totally fully appreciate the now. 

To live life in the now, and not fear the future anything is possible, I don't mean live life recklessly, but I do mean live life. Should I worry about something happening to stop my plans? No! What's the point, The only thing I should worry about is not acting on those plans now, as now is the only thing we have all got.

Of course there is always that voice, I think we all have it, unless it's just me! that voice that edits our actions, that stops us from doing things, that puts worry on our shoulders, and also that has the power to blind us of the now. But for me that voice doesn't place much worry about the future anymore.

I can see the irony, all those years of being healthy and well and at times worrying about the future, then suddenly you  have something to worry about and I then decided to stop worrying about it!   And with that, when I say I'm buzzing with ideas, those ideas have the space to grow, and be far more creative.

Now is the truth, now is really appreciating the conversation with our love ones, now is just stopping and looking, now is not only making that decision, but acting on it,  now is just enjoying the moment, now is saying, sod it! I will give it ago and try my best.  

I guess what I'm trying to say is, we all might as well make now the very best we can, because now is the only thing we have got.

Regarding that voice,  it may not worry much about the future, but it is still there and it still try's to edit. My voice right now even though It shouldn't is letting me worry how I am coming across in this blog, Its saying, most people loss there hair after chemo, you turns into Oprah! This suppose to be a blog about my experience, not "A road less traveled", but then turn that voice off and appreciate the now, and just think sod it, push the publish button. 


  1. Hi Carl, we have not yet chatted directly but I have followed your progress avidly through Rob on PCUK. I too am wide awake at 3 in the morning as the brain seems to be in overdrive, trying to list all the jobs to do on the house once my current chemo is over. Great to see you are keeping the Hospital staff and patients've got to keep the sense of humour or go round the bend. Your thoughts on the new normal, enjoying now and not worrying about future events reflect in many ways how I am dealing with this little devil. I hope in the meantime you are back home and feeling OK.

    1. Hi Steve,

      Robs told me about you mate, hope your well, and it's all going in the right direction. And the chemo is not too bad (but I know the answer to that one!) thanks for your message mate, keep well, all the best.


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