What is chemo like? Physical effects

For background, here was the post where I talked more broadly about my breast cancer diagnosis. And there’s a follow up to this one here.

A few people have asked me what the chemo is like, and this question has been much harder to answer than I thought. It's because I have been experiencing it so internally since it started, and also trying not to think about it too much and push forward instead. Thinking about the experience deeply enough to describe it is also a bit triggery and negative, and I feel as if I shouldn't dwell on this and instead should keep moving. As if stopping and looking at it properly will make it real. I do ultimately think it's worth getting down in words, though, and might help me to clear it out of the holding pattern it occupies around my brain.

I think it's worth keeping the medical stuff here in its own post, so that people who would rather not read it don't have to dwell on it. So, please feel free to move on rather than become negatively immersed in medical detail. Also, it might be quite boring! Then, I’ve put some mental effects in a separate post.

I find it very difficult to read about other people's medical stuff now, even to the extent where I found my recent Duolingo topic on medical treatment triggery, and I can imagine that others may feel the same way.

The first version of this post was much more negative and complainy than I'd intended. I think I try so hard to be positive that I don't always allow myself to complain, as it can drag you down. But I suppose I'll publish it as it came, more or less, as it might be useful for anyone coming across this post approaching the same treatment plan.

Though, of course everyone's experience is different, so nothing here should be taken to be 'how things are'. Particularly because I may have had a relatively easy time of it (so far).

I’m going to avoid being hyper-specific here in public, but am very happy to tell anybody who messages me directly about the actual details of what medications I’m on, the type and spread of the cancer, etc. Basically it’s an invasive and nasty type which is not good, but it’s a type which is well understood by oncologists and has several well-evidenced treatment options, which is good. The treatment will take up the whole of 2025 for me and beyond, as I'll then be on certain medications for many years to try to prevent recurrence.

My chemo is the first treatment, designed to reduce the cancer's size and reach before surgery. I think the Americans call the drug combination TCPH. It is delivered in 6 cycles, every 3 weeks. I started these in late January and it’s scheduled to finish in late May. Every type of breast cancer and every person’s context has a different combination of drugs associated with it. I also have to take strong steroids for three days around each infusion, and 4 or 5 other types of medication to deal with side effects.

So that's where I am right now, expecting to have chemo 5 out of 6 next week. Then come the relative unknowns:

I'll have surgery of some kind in June/July. I don't yet know what type of surgery (lumpectomy or mastectomy, and I don’t know how many lymph nodes removed but certainly some), and although I have some preferences, I’m not going to pre-empt the conversation with the surgeon in a few weeks' time. I also don’t want to think about it too much while I focus on getting through chemo. I will likely then need radiotherapy depending on the type and extent of the surgery.

Then, there will be more drugs after surgery (some of the same ones, some different) and I'll start long term hormone/ endocrine treatment and as I understand it, this will kick off chemical menopause (I think). A whole other set of challenges for future!Victoria to deal with.

I've had physical side effects, though overall, I've been physically feeling better than I'd feared. Someone suggested to me that chemo is a bit like a bad hangover. And, they advised me to expect the worst, then when it's not too bad, that's a win. All good advice and the hangover analogy is a good one.

I've avoided, so far, most of the more challenging side effects like skin blistering or neuropathy, or more serious illness that can result from the treatment, like anaemia or blood clots. I have to hope this continues to be the case. The immune system is compromised the whole time, and I've so far once been hospitalised overnight for an unspecified infection (sorted easily with antibiotics). I don't know what caused that. The nurses said it could have been absolutely anything and I shouldn't beat myself up (since I'd started talking about whether I could have cleaned more, or done anything differently).

I'm on a 3 week cycle, and mostly feel quite well in weeks 2 and 3 after each session, though as I get to the last few sessions, I find I am slower to recover (which is expected). I have to take strong steroids for three days around each infusion, to protect from the effects of the drugs. The steroid causes me to feel wired and hyper, exacerbates my digestive stuff and hinders sleep. That's only for a few days, at least.

After that wears off I feel heavy and dull, particularly in the first week, as if I'm made of metal like Wolverine. Getting up the stairs feels like dragging an unwieldy robot body made of lead. I drag myself around the house and land on the settee like a ton of bricks when I sit down.

In the first week after the session, it's particularly hard to eat, as I just feel all closed and blocked up somehow, and everything tastes like metal and smells odd, including water (drinking through a straw helps). There’s a wrongness about everything that is disconcerting. It’s a bit like being in a bubble while everyone else carries on with their normal lives.

Food-wise, I just sit down at mealtimes with my family and do my best. My appetite gradually improves during the phases between chemo sessions, and I can eat pretty much normally in weeks 2 and 3, though I’m slower than everyone else and rarely feel actually hungry.

I've been tracking my nutrition via an app to be sure I get a sensible amount of calories and protein in particular, to try not to lose weight, and putting some brain power towards eating varieties of fruit and vegetables, getting specific nutrients and having iron-rich things with vitamin c, and away from coffee and tea, and so on and so on. At least filling in the app all day long gives me a mini project. I have a number of tips but my main one is Skyr, which is particularly helpful as a protein boost, and because it's appealingly cool and digestible and doesn't get the taste of metal. (It's also appealingly Nordic.)

I have a constant runny nose resulting in sore nostrils, and nosebleeds for a week or so, when platelets drop mid-cycle.

This stuff teaches you to appreciate the simple things. I've really been enjoying that point post-chemo where I feel like… I could enjoy eating some crisps! It has been taking about a week each time to get to ‘crisps day’.

Although by week 3 I've been pretty much normal and able to enjoy food almost normally, there's always a wrongness about my stomach and I always feel refluxy. Digestion is never completely normal, needing thought, tracking and management involving occasional diarrhoea medication and rehydration sachets, and I have to be reliably near a toilet (preferably my own!).

The skin can get dry and sensitive, so I tackled this proactively by getting eczema—friendly products organised before I started. I audited all my skincare stuff, bought some new things and just put everything I can’t use at the back of the cupboard until normality returns (?). I can use some of my usual things like nicinamide drops and vitamin serum, so I can feel like treating myself and so it doesn’t all feel medical.

Each morning I use cuticle oil on my toenails and fingernails to try to prevent them falling off (something that can happen!) and moisturising cream on hands and feet, as some people have skin problems on their extremities which I'm trying to prevent. If I have any tiny injuries I have to take care of them properly to make sure they heal and don’t infect. Things like paper cuts and ingrown toenails heal more slowly and can be dangerous.

Of course, I've lost my hair, though slower than most people do, as far as I can tell. We buzzed it to about an inch in length when it started to get uncomfortable to wash (the roots become very sensitive to the hair being moved around, when it starts to fall out). My scalp now looks quite bare but I have an inch-long sprinkling of fuzz, which doesn't seem to be growing, and I haven't shaved it off, for the sake of warmth overnight. In the daytime I am almost always wearing one of these very nice wraps that I bought on Etsy. I’m not too bothered by the hair situation to be honest, though I know some people find it very upsetting. I got used to the face in the mirror not looking like myself.

After the first two sessions of chemo, I had some minor chemical burns on my hands from the chemotherapy drugs leaking outside the veins. I'm told these may remain visible permanently and look like bruises, though they’ve faded a lot already. We have so far sorted my vein issue in subsequent infusions by slowing down the speed of the IV.

I have blood tests each time before chemo to check if I’ve recovered well enough for the next dose. So far I’ve had chemo delayed twice, once due to too-high liver enzymes - the numbers recovered after a week's delay. Now, just this week I have a delay to chemo number 5 due to low platelets. This seems to be par for the course and common, and there's nothing really I can do about any of these things while my body does its stuff. I just have to keep going, eat well and stay gently active and trust that my bone marrow will grow the cells I need in time to get them destroyed again, then we do it all again.

From the larger to the smaller tasks, it is all time consuming, and existence shrinks down to the minutiae of bodily maintenance. I have to spend each day putting a lot of thought into my basic human functioning, feeding myself, moving, caring for body parts including the brain, and monitoring myself for signs of infection - do I have a fever or do I just need to put on a jumper? Am I having any weird symptoms that I need to tell the nurses about? Is this red patch/bruise/taste/pain normal? I long for the days when I used to just go around doing things without having to examine everything so closely. It’s sort of like walking around examining the ground for hazards before every single step. It's wearisome and limiting.

If I have chemo 5 this week as planned, then I embark upon the 3 week cycle again. At least I know what to expect. Then another mid May, then whatever awaits me next will be something different.

I think the soundtrack to this phase can be First Aid Kit: “keep on keeping on”.