30 radiotherapy treatments; 30 thoughts

birthday cake for a thirtieth birthday or anniversaryIn no particular order…

1. I’m supremely pleased to have finished radiotherapy. The treatment sessions were fine, but I’ll be glad to see the back of the gradual grinding down of my stamina and motivation, headaches and nausea. I’m told my side-effects will remain for another week or so, but they’re already on the way out.

2. Treatment started off easy, then almost overnight I became exhausted. After two weeks, I had to sleep at least two hours a day – my body gave me no choice.

3. Having the mask fitted was the most unpleasant part of the whole experience. The treatments themselves were a breeze – no more than 10 or 15 minutes at a time.

4. It was strange how routine having daily radiotherapy became, almost like a job to which I had to commute. I cycled to and from each treatment, and though it wasn’t a mission to do so, I’m very pleased I did.

5. Cycling to the hospital each day really opened up Belfast in a way I’ve not known it before. The short cuts. The cycle ways and pedestrian bridges. The river side. The sneaky tucks where cars can’t go. I would have missed those opportunities if I had gone in by car or train.

6. Sitting in the radiotherapy waiting room is weird. Everyone around you has cancer, yet few of us talked to each other about it.

7. Radiotherapy treatment was 85% travelling and waiting, only 15% actually being treated. It adds to the exhaustion.

8. I still haven’t quite got the difference between radiologists, radiotherapists and radiographers. But I am grateful to all of them.

9. Funny but necessary: the radiologists asked me my address and date of birth at every treatment; just before they put a mask on me that matched my face to the millimetre.

10. The most laughable day of treatment was the one on the day I’d volunteered to help staff the BBQ at our children’s primary school fete. I’d ridden to the hospital from the bicycle refurb workshop where I volunteer, on a mountain bike I’d worked on. Not only was my treatment an hour late, but I had to pick up the vegetarian burgers on the way home. As a committed roadie, I must have made a sad sight as I tried to get aero on a heavy mountain bike, with its road-sucking tyres, pushing against a crippling headwind to get to the BBQ on time. Not pretty.

11. The leaflets say listen to your body regarding exercise, and (other than the BBQ debacle) I’m glad I did. My head wanted me to go on long bike rides on the weekend, to join my cycling club on its club runs, and to join a huge cycling event in Northern Ireland. My body said ‘no’ and I know now I would have really struggled out there.

12. The reception of the treatment centre at Belfast City Hospital is staffed mainly by volunteers. “I’m just a volunteer,” said one. “There’s no ‘just’ about it,” I replied. Thank you to those volunteers. But why don’t we place higher value on ancillary functions like these in the NHS?

13. The angle of the beams going into my head necessarily included my left ear. It now feels like frazzled bacon, and itches right in the top crevice where it meets my head. Unpleasant.

14. There are a few other patches of dry, scorched skin on my head that are flaky and uncomfortable, but I think I’ve got off easy. I’m still applying skin irritation cream regularly.

15. Most of my hair on the left side fell out over a weekend, as well as patches on the right where the beams left my skull. After initial resistance, I shaved my head to even everything up. But a week later, the rest of the hair – as well a stubbly beard – was back. I couldn’t be bothered to do it all over again.

16. With half a hair-do, people in the street look – then quickly look away. It’s a slight movement, but noticeable. How many times do I do that when I see people who don’t look ‘normal’ either?

17. The longest I had to wait was three hours – the average, about 25 minutes. I was surprised and a little disappointed how irritated some fellow patients became with the staff there. They were clearly doing their best, but a broken machine is a broken machine. The staff would be hours late going home that evening too.

18. I fell asleep while being treated. Three times. It was lovely.

19. I expected to spend my time under the machine thinking about cancer, and more treatment and other deep things. But mostly I thought about jobs I needed to do, plans for tomorrow and other mundane stuff.

20. The treatment centre was extremely efficient, with flashing buzzers telling you when it was your turn. Each patient was called and ready to go into their machine room just before the previous patient had finished.

21. I really wanted to take my radiotherapy mask home to show my kids, so they could properly understand what I’d been doing each day. The radiologist refused citing – uninterested and seemingly by rote – some nonsense about privacy. It meant I left my last treatment on a slight downer.

22. Everyone in the radiotherapy department was professional, expert, interested and kind. Many remembered conversations we’d had weeks ago. Those little things meant the most.

23. Nausea kicked in after about three treatments and I resisted for a few weeks, before asking for some medication. The feeling of sickness went away overnight, but the payoff was mild constipation. Now I’m done, I’ll give the anti-emetics a few days. But I want off them, and the toilet, as soon as I can.

24. Things that may or may not be symptoms or side-effects of having radiotherapy on my brain: shaky hands, lack of motivation (particularly to write this blog and write long emails), spoonerisms and other language confusion, weird dreams about my early 20s, fatigue but also sleeplessness, increased appetite for sweet things, mishearing, mouth ulcers, dehydration, Brexit, feeling my head is full and pulsating, stomach cramps, being a hypochondriac.

25. I have a suntan on my face and neck. It looks a little strange, particularly around Belfast.

26. Are you supposed to write a thank you card and give your radiologists a gift, to mark the end of treatment? I did, but I’m still not sure; so I kind of sneaked it onto the reception desk and made a run for it.

27. My joy at finishing radiotherapy is tempered only by the knowledge that I have to start 36 weeks of chemotherapy in a month. This treatment is far from over.

28. However my radiotherapy has co-incided with the growing medical acceptance that radical radiotherapy, followed by the PCV chemo treatment I’ll have, makes a significant life-extension difference to patients with my particular tumour (with its specific genetic mutations). I am a living, breathing example of great science at work.

29. I have an enormous number of people to thank who have called, emailed, texted, FaceTimed, cycled with me and offered to take the children to make treatment easier for my family. Most of all, though, my wife has taken far more than her share of the family’s needs to allow radiotherapy to happen. She is my everything.

30. I have not had an epileptic seizure since before radiation began. Whether down to the treatment or the drugs, or a combination of both; and whether that continues into the future or not; it has made the last six weeks entirely worth it.

7 Comments

  1. You are amazing … So grounded … So positive and no doubt a huge inspirational source to many near and far. Thank you for sharing your experience in such a readable, positive way.

  2. Really liked reading this. Helped me with my memory of my radiation time. This time 12 months ago.
    I got to keep my mask and I have it on my wall. My kids like to play Star Wars with it.
    Good luck with your chemo.

  3. Hi Gideon – so glad you are done with the treatment. What a relief. No. 8 made me laugh as I am sure it applies to us all. No. 29 had me reaching for the Kleenex and No. 30 – Brilliant. Take Care. Penny

  4. Well written and so many similarities but more eloquently put than I could – just finished my 6 weeks yesterday and I was allowed to take my mask home ?

  5. Good point about volunteers. I work at different hospitals. At Gloucestershire hospitals the volunteers wear red shirts and blouses. Makes them easy to spot and so the patients and visitors can identify who can help them. I think it’s one of the ways that makes Gloucester and Cheltenham nicer places to be. They do make a huge difference.

  6. Delighted to see that your sense of humour remains intact and that you don’t shy away from the difficult, hard to share bits. It’s refreshingly honest to hear your “journey” – awful word isn’t, I do apologise but you know what I mean.

    I lost my partner, father of my youngest daughter,.to cancer almost thirty years ago now. He never once told me he had “cancer” and he spared sharing how his treatments affected him. He died without “letting me in”.

    Even after all this time, I still find his decision incredibly difficult to understand but I completely respected his decision at the time.

    Through your openness and honesty, I now have some small insight into what he had to bear all those many years ago.

    Stay strong Gideon. Keep living your life to the full for yourself, your family and your friends and be the man who inspired me with your wonderfully charismatic charity writing workshops and the man who continues to inspire so many others.

    Thank you.

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