All being well, I start the next round of treatment on the 2nd October. In terms of the practicalities, I’m well informed about what’s going to happen – six weeks of radiotherapy at the QE in Birmingham, going in every weekday with weekends off, and concurrent tablet chemo (including at weekends). I’ll then have a month off before resuming the chemo. I’ve been given lots of leaflets from the hospital explaining everything – I’ve been avoiding Google because it’s never a good idea, and mostly sticking to what I’m told seems like the best plan.
In terms of what side effects to expect, everything is a little bit more up in the air. As I’m sure is the case with most medication, some people are badly hit by side effects and others get off lightly. My main aim is to try and remain as an outpatient (though if a longer stay in hospital is in my best interests, that’s what I’ll do)
I’ve not made many plans for this time partly because of not knowing how treatment will impact me – although I hope to still be able to have some visitors and go to places, especially at weekends when while I’ll still be on chemotherapy, I won’t need to go into the hospital. It’d be especially cool to get to Birmingham Chocolate Festival, which is apparently happening sometime in October! I’ve also been told by the consultant that hopefully I’ll still be able to go to places like the cinema – I love films so this was really good news! Until recently I had an Unlimited card and I was almost always at the cinema – I haven’t been since July so that’s something that is on my to-do list. Seeing the new Star Wars is very near the top of my priorities!
A lot of my time will be taken up with getting to and from the hospital but I’m hopeful that I can make the most of the rest of it – having things to look forward to and not always being in my house or the hospital has such a positive impact on my attitude and my mental health. One of the hardest things about this is the feeling of everything revolving around it, and that’s inevitable especially during this intensive period of treatment. It’s partly why I’ve been trying to get out so much – if the side effects hit me hard and all I can do for the next six weeks is go for treatment and be in bed, having this last couple of weeks of relative freedom will be invaluable.
The list of side effects were a mix of daunting and reassuring – daunting because some of them are very serious, but reassuring because many of the worst ones are also the least likely to happen. I’m definitely someone who likes to plan things and know what’s happening in advance so it’s hard getting used to not knowing for sure but it helps that the consultant has been so open and honest with me. It also helps that I have seen people go through chemo and radiotherapy before, including (a different type of cancer and a different type of treatment) my mum, who many readers will know had breast cancer two years ago. This will be different in so many ways but I know something of what to expect despite that. I’ve heard that the treatment can make you feel worse than the cancer itself but mine is a slightly different form than that used to treat other cancers and so how I feel may be different.
One of the reassuring things was the consultant’s answer to our question about dietary restrictions – I don’t have many in additionto things I’ve already been avoiding (like alcohol, which I’ve barely touched since May anyway, and I’m not supposed to drink on my anti sickness meds anyway) or things I don’t eat anyway – such as shellfish! I was worried I would have to avoid sugar and carbs, and while I would have done so if I’d been advised to, I’m very glad not to have to. Partly it’s just easier for everyone if I only really need to avoid soft cheese (the only thing I’ll really miss) and also because it’s better for my mental health if I don’t deliberately restrict my diet because that has the potential to end as a slippery slope! I went to M&S on Friday because I had a voucher and bought lots of tasty snacks so I’ll enjoy those! The consultant said that if I stick to a pregnancy diet that’ll be fine. Infertility is another side effect of the treatment but this isn’t something I’m too worried about for various reasons.
I’m likely to feel much more tired once treatment starts, and as it is meant to be cumulative this will probably be particularly true as time goes on. Advance warning that this blog maybe less active and I may be even worse at communicating than I am at the moment! I’ll be on even stronger anti-sickness meds so hopefully that means the sickness from chemo doesn’t hit me too hard.
Most of the radiotherapy and chemo is going to be (as I understand) targeted which means it’ll be aimed at the cerebellum – this area of the brain mostly controls balance and coordination (it’s probably more complicated than that but I’ll use the excuse that I’m a medievalist, not a scientist!). These have never been strong points for me and aren’t key to who I am in the way cognition is. Losing my ability to think has always been one if my biggest fears and even more so now. I went into a little bit about how important this is to me in a previous blog post. That’s not to say I’m not worried about further decline in coordination and balance, just that there are other things which I probably value more (although the lack of independence that results from coordination and balance is often annoying at best). Both are things I can work on too, with the physiotherapists and the exercises they’ve given me to do at home. How much of this I’ll be able to do during treatment I’m not sure but I’ll try to keep up with them because they seem to be slowly working!
I suppose I’m lucky in that many effects that would have a huge impact on some people don’t bother me too much – like infertility and potential hair loss. I did order a wig the other day but that was more because I miss brightly coloured hair than anything else.
So, I don’t know what to expect. I feel as informed as I can be but the next six weeks will be a learning curve. This round of treatment should finish on the 10th November – yep, that means treatment on my birthday! As my birthday falls in the final week and it’s cumulative treatment I’m not expecting it to be a good one – though as I had such a good time in Stockholm last year, I already knew that would be hard to top!
I’ll do my best to keep everyone updated during the treatment but I can’t make many promises right now. Here’s hoping the treatment goes as well as it can do.