Chemotherapy is something that people who’ve been through it had warned me was horrible. I’d been keen to get that phase of my treatment started, simply because it meant that I would reach the finishing line sooner, but had no idea how it would affect me. Chemo side effects are different for everyone, with some people being ill for months on end and others breezing through the treatment without it affecting their day-to-day lives much.
I was keen to carry on working through it, which many of my friends hadn’t, for many reasons. As a freelancer I don’t get paid if I don’t work, so the financial implications means that I need to continue if at all possible. But, for me, work is more than a means to pay the mortgage. I do enjoy it! I like solving problems, the lively debates we get into when designing systems and I love the people I work with – we are a great team. I’m also really lucky that I can work from home, which doesn’t work if you’re a lorry driver or a nurse. But I knew it would be tricky to juggle as I have a lot of hospital appointments and also wanted to take the odd day off to do some fun things with my friends and family. I’ve managed to keep it going so far, and fingers crossed that will continue during the next few months.
As I write, I’m on the eve of my third chemo treatment and it’s been a fairly rough month for me; I certainly haven’t been my usual happy self due to the side effects. Writing this today, I’m actually over the worst of it, but as my next treatment is imminent I’m really nervous about how I’ll feel. Here is how it has affected me so far, and how I’ve coped – or otherwise!
I read somewhere that a cancer nurse predicted that chemo patients’ hair would start to fall out on Day 18 after their first treatment. True to form, on Day 18 exactly, I was applying wax but my hands were covered in hair afterwards. It was quite bizarre but didn’t actually freak me out as much as I expected it to.
When I first knew I’d need chemotherapy my first thought was about losing my hair and it scared the hell out of me even though I’ve only got short hair so you might imagine it would have less impact than someone who has a great mane of it. But immediately I knew I didn’t want to go the ‘bald and proud’ route, but neither did I want to wear a headscarf. I have nothing but respect for those that follow that path, but it’s a personal decision and for me I wanted to look as ‘normal’ as possible, even if it was just so that strangers wouldn’t look at me and immediately know I had cancer. So I started looking for a wig, just in case. It’s hard to find really short wigs so I ended up buying one which was long for me, and my hairdresser trimmed and thinned it out a lot. It still looks long compared to my normal length but isn’t a bad style, and is sitting in my bedroom for when (or if!) I need it.
After my surgery, my sister did some research and told me about microblading, which many cancer patients recommend. I had no idea what that was, except that it sounded like a cool alternative to rollerskating! It turns out that it’s a semi-permanent tattoo that allows you to ‘colour in’ and reshape your eyebrows, and in the case of people who experience hair loss it’s a great solution to keep your eyebrows looking good when the actual hairs have fallen out. I’m not great with an eyebrow pencil, which is the usual solution for sparse brows, so immediately booked myself in with a lady who was highly recommended by the school mums (who are young enough to know about these things). You need to have microblading done well before chemo so it’s a good idea to get it done as soon as possible. There are two treatments, the initial one and then a top-up 6 weeks later, in case any areas need filling in more, you need to improve the shape or you need a darker shade. I can’t pretend it was painless, but it was over quite quickly and I was really pleased with the results. I’d been pluckng my eyebrows since I was about 11 as I looked like Dennis Healy in the 1970s, and they weren’t a great shape. Having them microbladed meant that the shape could be drastically improved, which was a bonus!
Here are the before and after photos :
Anyway, back to my hair loss. Although I have a wig on standby I still wanted to do as much as possible to keep my hair, so I decided to try the ‘cold cap’ during my chemo treatment. Scalp cooling freezes your hair follicles so that the chemotherapy doesn’t affect them as much, and you are likely to lose 30-50% fewer hairs if you use it. Many cancer patients don’t like wearing the cap and they find it so painful or uncomfortable that they don’t use it for long. What happens is that the nurse wets your hair and puts some conditioner on it, to make it easier to remove afterwards. Then they put the cap on, which is a bit like a hightlighting cap, and then a pink top layer is put on which connects to the cooling machine (or fridge!). They turn it on, and then you need to spend 45 minutes just waiting for it to cool your scalp to the right temperature. Well, that’s if the machine works. Both times so far I’ve had duds and they’ve needed to swap machines, which adds even more time to the treatment. Once your head is cool, they start injecting the chemo into you. Once the injections have finished, around 1-2 hours later, you then have to sit there for another 90 minutes with the cap on, to keep your head cool. I think the timings vary hugely as I read elsewhere that the recommended period should be 30 minutes before and 45 minutes afterwards, which is much less than at my hospital.
I can’t pretend the cap is a pleasant experience, but it was certainly bearable for me. Maybe my head is pain resistant as I’m used to 40 vol bleach being applied on a regular basis, which really burns my scalp! It was definitely worthwhile for me if it would preserve some of my hair.
So, on day 18, and every day since, my day starts with me removing all the stray hairs into the sink. There are loads of them, but they are in their hundreds rather than massive chunks. My hairline is very sparse, as the cap doesn’t cover that. My lovely friend Dawn, who has been cutting my hair for 30 odd years, gave it a big trim to tidy it up, so it’s much shorter than it used to be. I do have a very thin patch on my crown, which is common even for those using the cold cap, but a comb-over helps to disguise that. I think Donald Trump would be proud of it! Most short people don’t really notice, it’s just the tall ones like my husband that can see it more, but I don’t think a stranger would look twice. I’m not sure how long I’ll get away with it but the wig is ready when I need it. My family have strict instructions to tell me when it’s got too thin so that I don’t look silly when I go out.
The other big side effects that most people associate with chemotherapy are sickness and nausea. I was told by my oncologist that most people aren’t actually sick these days, because they’re prescribed anti-sickness tablets before the chemo injections and some to take for three days afterwards. After my last treatment, though, I felt very sick and even taking the teeny tiny tablets was a challenge. I gagged on them every time and it was horrible. On the evening, just taking the tablet made me badly sick, and it was horrible. I’d had a healthy green M&S superfood salad, which wasn’t very pleasant when it came back up! I’ve avoided edamame beans and broccoli ever since! I actually felt sick for about ten days, and was a real baby taking any tablets. I eventually found a way of doing it though, which was to hide the pills in ice cream!
The picture below shows how small the tablets are against a 1p piece!
It only worked for the small ones though, and the idea of taking a normal paracetamol would have been impossible. I’m going to ask my oncologist for the anti-sickness tablets to be swapped for a syrup, like children take, to make it easier to take next time!
Other side effects
I’ve had a myriad of other side effects, which I’ve had to list in a diary, just to keep track. You get a nasty taste in your mouth as soon as the drugs are injected so can’t enjoy many of the usual drinks or food that you normally would. I’m normally a big water drinker, but water tastes really nasty now. I drank gallons of squash after my first chemo as I had a raging thirst too, but after my second treatment I went off the squash, so my sister brought me a range of other drinks to try. I finally ended up with apple juice as the only option as it’s all I could tolerate!
This time I’ve managed to avoid the agonising mouth ulcers which plagued my first cycle. You don’t realise how something seemingly so minor can really affect your day-to-day life. I couldn’t eat without applying some kind of mouth gel, and even just talking was painful! Your mouth becomes very sensitive and you need to use a soft toothbrush to help prevent damaging it.
The tiredness is really hard to deal with too. I’m not a good sleeper at the best of times but it’s got even worse during chemo. I was even prescribed some sleeping tablets in this cycle but they only worked on one night, so I only used them for three days in total. But even if you do manage to sleep for 6 or 7 hours (which is enough for me to function on, usually) you are still ‘fatigued’. The only way I can describe it is that it’s like when you fly to the US, when you arrive at teatime their time but it’s midnight UK time. You then have to stay awake for a few hours to acclimatise to the local time, then go to bed at a reasonable time, and your eyes hurt with the tiredness. It hits me at about 2pm every day, and if I’m at home then I have a little siesta which really helps. If I’m at work or out and about then it’s harder, and you just have to grit your teeth and power through it.
For five days every cycle I have to inject myself with drugs to boost my white blood cells. These stimulate your bone marrow and by the end of the five days I get really agonising back pain. It’s like I’ve pulled a muscle, or hit a nerve, and all I can do is take some paracetamol and make a hot water bottle, which helps.
I’ve also had headaches which last all day, cystitis, constipation as a result of the medications and bad indigestion. When you get a few of these side effects at once it can really get you down, and I was really fed up during this cycle. I’m so lucky to have friends and family I can be miserable with, and they let me have a good old moan! I also felt quite anxious about the next chemo, worried I’d be sick again. I had a telephone chat with a lovely friend, Emma Cox, who is a trained NLP practitioner, and although it wasn’t the same as a proper session with her she really did help me. She suggested I asked my son to draw me a picture showing that chemo is good, and is killing the nasty cancer cells. He did, and I love it!
I’m a really visual person, and am always drawing diagrams to explain things at work, so to have this picture really helps me turn the chemo into a more positive experience.
Not many people would think that weight gain would be a common chemo side effect, in fact I’m sure the opposite applies. You think of cancer patients as being skinny, but I think it can go either way. If you are really ill, then you’ll eat less so will lose weight, and that has certainly happened to friends of mine. But for me, the lack of exercise and comfort eating have meant I’ve put on nearly a stone.
It’s really depressing, as I’m usually a really fit and active person. I used to love my early morning runs along the seafront, but a lack of energy and just trying to get more sleep have meant that I haven’t done that for a couple of months. I know I’ll be able to lose the excess baggage at the end of my treatment but it’s horrible when your clothes don’t fit and nothing looks right when you try it on. I know it’s totally avoidable, and I should be more strict with my eating, but when you feel rubbish and can’t do many of the things you usually would, then chocolate is the only solution!
One of the really annoying things about chemo is that my social life has taken a dive. I’ve missed scooter rallies, and had to cancel two gigs that I was really looking forward to. I’d managed to bag some ELO tickets when they went on sale, who are on my bucket list, but sadly had to sell them as I was feeling too poorly. The same happened a week ago for the Suggs one man show, when I was too ill to go. I’ve had to cancel seeing friends, and if they’ve come down with a bug or a cold then they have to cancel, just to protect me. The saddest moment was when I made the decision that I couldn’t attend a family funeral, which really upset me. As well as feeling really ill, I have no immune system in the middle of a cycle so can’t take any chances with picking up infections. We’ve become a family of manic hand washers, which is the best way to prevent any bugs being spread around. I’ve got hand gel in every handbag and ask people politely to wash their hands when they come round to see me. It might seem excessive but so far (touch wood) I haven’t caught anything.
It’s time for me to nag again! Please check yourself regularly. Two friends of mine now have found significant lumps but neither have turned out to be cancer, thank goodness. Early diagnosis is vital so please see your GP if you are worried about anything.
Chemo side effects are very similar to what it is like being pregnant. The weight gain, tiredness, nausea, indigestion, not being able to eat certain foods, getting fat… but with cancer you don’t even have a cute baby to look forward to at the end of it!
I try to take one day at a time and not think too far ahead. It’s quite daunting to think that I’ve still got radiotherapy and a mastectomy to come, so probably won’t feel anything close to ‘normal’ until the middle of next year, if I’m lucky. However, looking on the bright side, as far as the medics know my cancer is treatable, for which I’m extremely grateful. There are many who aren’t so lucky, so I’ll grit my teeth and get through it as best as I can.
I massively appreciate all the good wishes, messages, cards and gifts that I’ve received. I can’t tell you how lovely it is to receive a text or Facebook message, and they really cheer me up when I’m feeling miserable. People are so helpful too, and the help with childcare, getting prescriptions, picking up shopping, taking me to hospital appointments, just being there if I need a walk or a chat, I’m so grateful for all the things that others have done for me. I feel really guilty that I’m such a burden, especially to my close family who run around for me at home. Hopefully though, normal service will be resumed by this time next year!
To read about my story so far, here are previous posts :
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