Tomorrow I am flying to Jacksonville, Florida, for Proton Therapy.
That first sentence was easy to write, however now I am finding myself struggling for words. It is hard to know how to proceed with this post because there is so much I could write, so many different directions I could go in. But after much deliberation (drumroll) I think I will continue like this…
Tomorrow I am flying to Jacksonville, Florida, for Proton Therapy and I am shitting myself. Last time I went out there, I had a great time in some ways, but in others, in medical terms, I did not. I think initially, when I first got my cancer diagnosis, I generally felt a little removed from it. The fact that I had already had surgery to remove the tumour acted as my buffer because as far as I was aware it was out of me. There were times when it suddenly hit me, when I was scared for my life, such as the days spent waiting for the results for my body scans. I spent these terrified of hearing back that I had a brain tumour because all I could focus on was the indispensability of the brain; that really did scare me. But after I heard it had not spread and that I was okay, I was elated and confident and secure in my health, perhaps even cocky at times because weirdly I felt I had beaten this “cancer” thing that I apparently had relatively effortlessly. The fight had been in the months before the diagnosis, when the tumour was growing up my nerves, and the surgery felt comparatively easy to that struggle.
Last time, I was looking forward to Jacksonville. I felt healthy and happy, and I was travelling to Florida, all paid for, for state of the art treatment for ten weeks. I foresaw myself having what we called a radiation vacation; our trip’s reason, but not focus, would be my therapy, and in our down time we would explore the city, spend time on the beaches and shop ’til we dropped. This turned out to be not so much the case, as I started having symptoms once again, and a planning MRI showed my tumour had not been removed properly and it was now larger than before.
Although bizarrely I did have a nice trip, in my mind it was the starting point of this section of my journey: when it turned from “I had cancer”, to “I have cancer”. It was the point when it dawned on me that this would probably be harder than I originally thought, and talks got real. Suddenly the word “death” began to be mentioned every so often, as though this was what we were fighting on top of this “cancer”. It was the point where my trust in doctors was shattered, and although everyone at UCLH, Stanmore and the proton centre have been amazing and have done their best to build it back up again, it is the reason why I find it so hard to believe any good news I am given and doubt sometimes that I will ever get better.
These words were the ones that I wrote the day before I flew and that I hoped to post before I went to Jacksonville, however I ended up too exhausted to finish the post. I still wanted to post it though, so I will just add a new ending that I wrote on the plane and that takes a different direction to the one I imagine I would have taken had I finished it a couple of days ago. And luckily for everyone at home, it was a much happier and positive me that was writing it. Maybe this was due to the combination of strong painkillers and Disaronno, or maybe it was just chance. Whatever it was I’ll take it and a couple more drinks to be on the safe side, because I’m feeling okay about everything now:
Back at home I was finding the road ahead daunting, and I kept counting the months I had done and those I had left to do and comparing them, worrying all the time that I had a long way to go, stressing and convincing myself that I couldn’t carry on for another six when I felt so exhausted after ten. I had built up all those memories of this trip last time, twisting them in my thoughts and imagination, into this nightmarish idea of what this time would be like, until I was worried and anxious about even getting to the airport. But it is baby steps, and getting on this flight was one of them. And I managed that fine, so how hard can the rest be? So now it doesn’t feel so bad; rather than this new stage staring me in the face, I am now in it and living it, and it’s not scary, it’s just life.
I know I’m going back to a place where the weather is warm and close by you can visit talking and singing mice who are married and have a pet dog (Disney, I’m not on that many drugs). The location could be a hell of a lot worse and on top of that I know the staff at the UF Proton Centre where I will get treated are the most lovely, kind people. Already they are organising support for me and my mum and I know they will do everything they can to make sure we are happy. Plus there is an amazing sweet shop called Sweet Pete’s which I will visit asap to stock up, because I am already getting withdrawal from my home chocolate supply, from which I have been so cruelly and mercilessly torn away from. Unfortunately, the NHS pays for Fentinil patches but not sugar patches.
We box things up, dividing them into parts, and often it is helpful but sometimes it is not. I think of the journey ahead as the Proton stage, followed by the chemo stage and I think it was doing this that was getting me down. Stuck at home, waiting for the next stage to start, I felt useless, as though I was in limbo, constantly sitting around counting the days go by. (Although I will admit I did get to watch copious amounts of the Real Housewives and Millionaire Matchmaker, and I did love that.) Now I am living the proton stage and I feel proactive, useful, as though I am closer to the finish line. So again I’m feeling like I can do this. I am sure at many points in the future I will feel like I can’t, and I’m just going to have to remind myself that that’s okay. But during these times I will do my best to also remind myself that I am strong and that if I managed to get through that bitch of an operation I can do anything. Blasting Destiny Child “Survivor” while I’m in the shower seems like the best way to me.
So that step onto the plane this morning may have been one small step for the rest of the passengers, but it was one giant leap for me towards finally beating cancer in its shitty little face.
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