At Sea

The last month has been really hard and very stressful. I may as well have been floating about the ocean on flotsam – I’ve felt that helpless.  I am not some pink ribbon bedecked Boudica spoiling for a fight; I’m a scared little kid that wants someone to come save her.

Physically I’m doing very well. I’m virtually pain free and to a stranger I must seem perfectly healthy. Following my last scan, I was told that I’m responding to my current treatment regime better than your average patient.  Well of course I am! And I’m mighty proud of myself. In fact, if there was a treatment leaderboard I’d like to think I’m at the top! “Go big or go home!”

Perhaps it was this ‘super patient’ skill that made them offer me an additional treatment, who knows, but it was quite the curve ball! Totally up to me, window of opportunity not open indefinitely, we need an answer – c’mon! Chop, chop!

(For those of you who may be interested, the drug is called Abemaciclib, it’s a CDK4/6 inhibitor. I’ve only recently conquered the pronunciation, so I’m not going to try and explain what it’s meant to do. Google is your friend!)

First time around I took and endured everything that was offered or prescribed.  I wanted to live and that was the treatment goal. This time it’s different. There are treatments aplenty available to me, but none offering a cure, and the possibility of life without any treatment is no longer an option.  Consequently, my choices are measured and defined more by the quality of my life than my longevity. If it’s possible to have both then obviously I want to seize the chance – if only everything was clear cut, but it isn’t.

This is quite a new drug and has only recently been made available in the UK (I think). Apparently, it may have been more use to me if I’d started it in conjunction with my other treatments back in July, but that wasn’t an option then. As I’m eight months in to my current regime it’s possible the drug will do bugger all for me at this stage – but no one knows! I guess I’m a bit of a guinea pig. Could be my chance to shine!

Just two tablets a day, no needles and I can take them at home. Easy, yes! But I feel great right now and the side effects look pretty scary! Extreme diarrhoea, risk of infection, fatigue, to name but three! Why would I want to risk feeling crap for possibly no rewards? It makes no sense, right?

I’ve been so torn. I want the chance to live well for longer, ‘well’ being the operative word. I don’t want to start down the road of feeling rubbish, of being too ill or too tired to enjoy whatever life I have left. Not yet thanks! These are not thoughts or decisions I even want to have. It’s easy to say: “give it a try – what do you have to lose?” or remind me how “lucky you are to have a choice” – well, FYI, I still have stuff to lose and autonomy in this instance has been seriously overrated. I desperately needed someone else to make the decision for me. I wanted a doctor to say: “just take this, it’ll be great, you’ll be fine!”, but they can’t do that. When a drug or treatment becomes available to me, they can tell me about it and offer it, but they can’t give their blanket approval or insist it’s in my best interests – I’m simply given all the pros and cons and left to make my own, informed decision. It’s not easy.

So I asked the opinion of an ex GP, my Macmillan nurse, my parents, my kids, my friends, friends of friends and finally wrote a detailed list of questions, some serious, some trivial – and insisted on meeting with a consultant.

Sixteen days later plus an hour of discussion and I finally made the decision to start taking the drug. What a relief! It doesn’t seem quite as bad in reality as it is on paper (I’m taking the consultants word on this) and I can quit any time I want if it’s making me miserable.  Deep down, I know that if I didn’t at least try it I’d regret the decision.  I took my first tablet on Thursday night and six doses in I still feel ok, although I have stayed close to home (and the toilet).  Hopefully I can cope with any side effects and it buys me some more time.  I’ll keep you posted.

PS:  For those of you, including myself, who hate sentences beginning with ‘So’ – I’m sorry.  It kind of worked for me at the time and I promise not to make a habit of it.