What is chemo like? Mental effects

Context for this post is here and here. This is the second post in my mini series about chemo!

The most emphatic advice I received from a very kind acquaintance who has recently gone through this process, was to keep a positive mindset. She had seen people in her chemotherapy cohort start to lose their way with the physical treatment if they lacked a specific state of mind. I think she is right that deliberately and consciously keeping an upbeat sense around your progress, even when that involves some doublethink, is absolutely crucial to getting through it. I do find that the biggest threat to getting through this is mental health.

As a friend recently said, wondering why this has happened, or indulging thoughts of injustice, isn’t helpful or cathartic. I’ve found there to be little other option but to reduce existence to one day at a time and keep going.

I struggled with dark thoughts, particularly early on, when the mortal fear felt more real and I didn't know the cancer's stage (as I discussed more here). I continue to find fear the worst thing to manage, as if I let it take hold, the dread causes physical symptoms like shivering and lack of sleep that then impact my actual health. Some of the fear has been related to the physical experiences and some is more emotional. It's more the constant focus on the minutiae of the physical body and its risks.

I had a few mild vein damage 'burns' from the first sessions of chemo, which caused me a lot of fear from reading people's appalling experiences of what's technically called extravasation (when drugs escape the vein) on cancer forums. It took me a while to realise that while still potentially dangerous, my drugs weren't the type to cause the catastrophic injuries I had been reading about, and that what I'd read wasn't relevant. This experience led me to leave all the cancer forums I'd been following.

I highly recommend minimising forum reading. A kind Macmillan person on the phone early on, had previously told me that reading forums can lead you to unknowingly absorb and take on the burden of other people's emotions. I think this was very wise advice. Any time I start reading them now, it drags me down to a dark place. I also find I don't really want to talk to people about cancer or think about cancer too much, and this is has also made these posts difficult to write.

It also means there’s yet another reason to avoid talking to the other chemotherapy people when I’m in for my sessions (apart from my usual disinclination for small talk, that is). Lots of them do want to make conversation about cancer, and I just don’t, but I know they may need to talk to someone, so I have to find ways to not be rude and hope they can meet their own need, while also not having the conversation, so as to meet my need. In practice, my husband always comes with me to chemo and we watch TV show episodes together on the ipad while I’m having the IV infusion, a routine which is an absolute blessing because it means I can think about anything but cancer while in the most cancer-y place.

(This doesn’t mean I never want to talk about cancer, by the way. If anyone reading this would like tips or advice, this will be fun for me to reply to! In fact I had to delete a whole load of tips and advice from this post that I’d be more than happy to send anybody. 😄)

I'd say the biggest mental challenge is the fear of infection. Chemo damages your immune system's ability to deal with infection and injury. Any small injury or illness can become a more serious problem. Nothing is anodyne any more. There are dangers everywhere in my home and around me, and everything takes longer to heal. This sense that my own body is rife with risk at every turn, is very psychologically wearisome.

I need to avoid crowded places. Although the oncologist carefully emphasised that I didn't need to stop all normal activities, the advice is quite clear. I decided to pretty much go on covid-mode, wear masks when around people who are not my immediate family, and avoid all supermarkets, restaurants and cafés, and all train or bus travel. I decided not to eat food from cafés since the food might have been sitting out, or been prepared in a non-hygienic way. The one exception I've made so far was a school concert where my daughter was performing. I wore a high performing face mask, and the school placed us in some quiet seating away from other families.

This is ok, and it will pass - I know there are people who have to live with lowered immunity for much longer than the months I do. It's still dreary. I miss the life I took for granted where I could just go places and do things, and not have to monitor tiny injuries or keep such a strict hygiene regime.

I think cuddling my daughter and husband counts as a minimum for my mental health functioning. How I understand it, is that it's ok for them to be around people all day, as they have normal immune systems, so they're not going to catch things as easily as I would, so they won’t pass them on to me either, so I can cuddle them. But, if either of them is showing signs of illness, they'll isolate from me. So far this has only happened once when it seemed like my daughter might have a cold. My parents have worn masks around me if they've been around their other grandchildren, just in case they're harbouring something. I haven’t really seen anyone else and that’s the boundary I’m comfortable with. I made an exception to see my son who came home from university for a week, again making sure he didn’t have any cold or fluey symptoms, and I consciously decided to enjoy being normal-ish with him.

This week, as I mentioned in my other post, I have a delay to my next chemo due to low platelets. This is frustrating, because getting to number 5 out of six feels like a good milestone, and it's annoying to have it pushed back. I always find I go through several days of low mood and dread anticipating each infusion, which means I now have to go through that again this coming week.

I have found it hard to balance the imperative of getting through life one day at a time with my normal project- and purpose-driven preference. I can't plan anything - even several months ahead and I don't know when I can be anything approaching normal again (I don't know what I'll be able to do when, around surgery in July and further treatment beyond that). People do tell me chemo is the worst part, so if that's true, I can look forward to at least something else, if not anything resembling normal.

I have deliberately had to allow myself to learn to just exist and to reevaluate what I mean by achievement. Some days, getting outside for a short walk is enough achievement. I try to do one yoga or pilates session per day (I probably average 3-4 per week) and do one walk around outside per day. I need to take care to keep myself warm enough. I've been lucky enough to be sleeping quite well. Monitoring this stuff and checking my Fitbit stats feels projecty enough to keep me distracted.

Some days it is getting to the next chapter of my book or ipad game that feels like a projecty achievement. I have inevitably done some Victoria-like typical things (I completed an autism course that might help me get future jobs, and I’ve planned to do various other bits of work or learning) but setting myself too many of those targets or trying to think about or plan what work or projects I could do in a future phase, I have found make things seem oddly frightening and hopeless. It’s almost like zooming out any further than the immediate seems illegitimate or too entitled.

It’s a complex web of stuff around permission and being ‘allowed’ and what I ‘should’ do that a therapist probably needs to help me with. So instead of writing a novel or composing music like I felt I 'should' (for some sense of self-image), I've allowed myself to find happy feelings through playing The Room game series on ipad or getting really into watching Severance, for example. (The ipad being an amazingly kind gift organised by a friend who presciently knew what I would need). I've been reading books and listening to audiobooks again thanks to North Yorkshire libraries, and a former colleague from there has been helping me get access to their book collection scheme.

I can’t treat it as a “break”, because there’s no sense in which it can be one, but it feels more legitimate to my psyche to do things like games and TV if I acknowledge that finding positive, distracting leisure for myself is itself work. I am conscious of warding off the darkness the whole time. Most of the distractions are to kill time to get to the next day, and the next, until something I can call life returns.

I do want to emphasise that I'm not on my own, and that my people are wonderful. My husband and daughter and I have family film nights and other little rituals, and we always eat together. And crucially, we do manage to laugh and feel happy, all the time, and we all get on very well together with very little friction or problems. I’m very fortunate indeed.

My daughter and I have a sort of pact to get through the next six weeks together in one piece. She's sitting exams on about the same schedule as I'll be finishing chemo. So we can both look forward to that phase being over, around the same time. And my son will come home from university at the end of May so there will be plenty of people around to keep me from any dangers of solitude.

It seems that it’s a team effort to get me through this, so any time I see the darkness creeping up, I can remember my family is with me and my friends care about me, and it’s one step at a time, onwards.