Today marks the official end of my chemotherapy treatment. It's been three weeks since my last dose, but unlike before, there is no top-up today of the poison which is also saving my life. My body can continue to recover and rebuild, and I'm busy regaining strength and energy in time for my surgery on 24 October.
So long, farewell, chemo. It's been... well, shit, to be honest, and I'm bloody glad to see the back of it! Now, I know I've been putting on a brave face (literally, in the case of drawing on eyebrows), but I feel as though I should at least write one candid post about the effects and lessons of my six months of chemotherapy. You'll laugh (I'm kidding myself if I think 'with' me, you'll laugh 'at' me), you'll cry, you'll wince, and you'll hope you never have to go through it yourself. And I hope you don't, I really do, although if you do, I'll hold your hand every step of the way. It's shit, yes, but I survived it, and thousands do, but we develop a sick sense of humour and lose all dignity in the process.
One of the words most commonly used to describe chemo by people who have been through it themselves is 'doable'. As in: 'it's awful, but it's doable'. This has always intrigued me, what does 'doable' even mean? It's such an insipid, unassuming word. It has no sense of the horror of chemo, but it's factually correct. I suppose chemo is indeed 'doable', but hiding behind that word is a whole storage locker of pain and indignity. Strangely enough, I will probably find myself using that word to describe it in future. I did it, it's doable, I'm still here to tell the tale.
I've learned a few lessons over the last six months, valuable lessons about myself and my relationships, and I've experienced things I never want to experience again. So here are the fruits of my chemo education.
A little caveat: everyone's response to chemo is completely different, regardless of their regimen. I've learnt this through many online conversations in my support groups and with women I've been put in touch with, so there's no rulebook (and there appears to be no logic either) but here is my honest and frank experience.
As I've mentioned before, having chemo is like spraying your entire garden with bog-standard weed killer because some pesky weeds killed your rosebush. You don't know how far the weed seeds or roots may have spread, but you don't want the weeds to kill anything else in your wonderful garden, so you take no chances, and you blast the whole thing with strong weed killer. It's not very targeted, but it's certainly effective.
Side effects of chemotherapy:
So let's start with the obvious: hair loss. I've been rocking the headscarves for a few months, so it's clear I've lost the hair on my head. But hey, I also learned that hair is not just an aesthetic thing, it's also actually kind of useful. Eyelashes and eyebrows have functions. Not only does my face look weird without them, but I keep getting things in my eyes these days, and they are constantly watering. The loss of my nose hair is super annoying, as I now have a permanent drip from the end of my nose. It drips on my notebook, or into my dinner, totally unannounced. And, TMI, hair 'down there' is also useful. Why on earth people pay to have it removed in its entirety is beyond me. I want it back please! Sadly, the leg hair is persistent, no silver lining there.
Then there's the fatigue. It's very hard to describe but I've never experienced anything like it before. And it has different stages. Usually for the first few days after I've had chemo, I have immense fatigue, I feel tired all the time and usually don't leave the house for at least a few days. When I do try to go for little walks I can barely make it round the block before I have to sit down on a bench. And I have a fog behind the eyes, and need to nap lots (gotta love naps!). I don't have the strength to open the coffee pot in the morning, I'm dizzy and often can't walk without holding onto the walls. I take baths instead of showers because I can't trust myself to have enough balance to stand in the shower. I slowly regain energy and strength as the days go by, but never to anything remotely like even 50% of my 'usual' energy. I practice energy conservation (lifts not stairs) and have to make tough decisions about what I spend my energy on (ie if I go into work, that uses up all that day's energy. Usually a walk around a gallery exhibition floors me, etc). Even having a conversation is exhausting. For someone who is used to running around doing a million things a day, the fatigue has probably been the side effect that has impacted my life more than any other. And I don't have the language to describe what it feels like ('fatigue' just doesn't cut it). I find myself saying 'I'm exhausted' to people and they just nod and say 'mmmm' and I know that they have absolutely NO IDEA what I'm talking about.
The dehydration is intense. When I first started chemo, there were women in my support groups sharing tips on how to make water taste interesting. I laughed them off, thinking, 'I love water! I drink loads of it already, I'll be fine'. Not so. When you have to drink litres and litres of it each day it starts to get incredibly boring. No, more than that, I'm bloody sick of it! It makes me gag. So I had to try everything to make it taste interesting: diluted fresh orange juice, elderflower cordial, a plethora of interesting teas. And my skin is completely dry all the time, I've never moisturised so much in all my life. I've invested in a stash of 'Moo Goo' products, which are lovely and completely natural, free of nasties such as parabens etc. I'm obsessively moisturising my hands a million times a day, and my lip balm addiction has intensified. I put a spoonful of coconut oil in my bath. I'm applying nail oil to my nails and cuticles a few times a week, because, oh yes, my nails are getting dry and brittle, and are slowly peeling off.
On that note, I lost my first toenail last week. Yes! They're just coming right off. Fun times.
Everything takes a million years to heal. I have some mosquito bites on my leg which have been there for almost three months. If I accidentally cut myself, my blood just doesn't clot properly, and the wound takes weeks and weeks to heal. I put this down partly to my low neutrophils and white blood cells, as my body doesn't really have the mechanism to heal itself well. Interestingly, I was warned that this would make me more susceptible to catching infections, but ironically my own worst enemy has been my own body. The main things that have knocked me down are things which regularly exist happily and silently on my own body but have been able to make me ill because my immunity is compromised (such as the staphylococcus aureus I got all over my skin). If I so much as walk down the street I get blisters on the soles of my feet, and woe betide my hands if I don't wear rubber gloves while washing up.
My digestive system has been shot to pieces, every aspect of it. My tastebuds have changed, my eating habits affected, my tolerance to spices severely reduced and my cravings for beige food dramatically increased. And don't get me started on the other end of the digestive system. Let's just say I have 7 different types of laxatives in my medical cupboard now. Yes, seven.
Changed eating habits and lack of energy have led me to put on 6 kilos over chemo. I feel sluggish and most of my clothes no longer fit me. I'm looking forward to getting fit and healthy again. I am, however, grateful that I've been able to keep eating and feeding my body to give it the best possible chance to maintain energy and nutrition. Many people get such sore mouths and heaps of mouth ulcers during chemo so they lose weight due to lack of ability to eat. I'm very happy that it's been the other way round for me.
I get random nosebleeds all the time and there's nothing I can do about them. They won't clot, my nose remains dry and sore and I can't predict when they will happen. A couple of times they've happened in pretty embarrassing situations but I've always got tissues on me so I've escaped any major dramas.
Chemo brain is real. Yes, the cognitive impairment has been strange for me, especially as someone who prides herself on being articulate and decisive. At its worst it has been crippling: forgetting the words for things, forgetting how to use the oven, struggling to string a sentence together. I've developed coping mechanisms and workarounds, but this is one they say can linger, and I'm not looking forward to that.
Menopausal symptoms, the main one being hot flushes, have given me a new-found empathy for women going through the menopause. Hot flushes just come upon you suddenly, your entire body temperature soars and you're sweating all over, then a few minutes later you're shivering with cold. As this is happening regularly through the night as well as the daytime you can imagine how this is affecting my sleep. And when your body is trying to heal itself, sleep is something it really needs.
Then there are the side effects from the drugs they give you to prevent the chemo side effects. I kid you not! Each round I had to take steroids to make sure my organs kept working and to combat nausea. These prevented me from sleeping and gave me severe 'roid rage', turning me into a monster on day 4 or 5 of every cycle! The GCSF injections which Tanai administered daily after chemo were meant to encourage my bone marrow to produce white blood cells, thus preventing me from becoming neutropenic. Well these had the delightful knock-on effect of making all my bones ache like hell. A good dose of Epsom salts in the bath eased the pain.
There are more, but these are the 'highlights'. And I suspect that each one alone would be manageable. Many of them are not in themselves debilitating. But combined all together, when you're attempting to still function in society, they have been extremely challenging. I hope I've managed to demystify some of this experience without grossing you out too much.
On the plus side, the chemo has been busy NUKING THE CANCER, yeah. Let's face it that's the primary plus factor. Also most (but sadly not all) of the side effects are temporary. My hair will grow back (perhaps curly, who knows?), the fatigue will ease, I'll lose the chemo weight. But now I will continue to take Herceptin for a year (in injections every three weeks) and Tamoxifen for 10 years (a little tablet each morning), which bring their own side effects. There is also the likelihood that my treatment will bring on early menopause, eliciting a whole heap of other wonderful side effects. What treats I have in store!
There are other positives to this experience, though. There are so many organisations out there geared up to help. For example, Macmillan sent me a small plastic card for my wallet which requests that the person I show it to allows me to use their toilet in an emergency because of my cancer treatment. Useful when out and about! And Transport For London sent me a badge which passive-aggressively asks people to give up their seat for me.
And here are some of the things I've learned while going through chemo:
1) I can walk to my local city-centre Waitrose in tracksuit pants, no undies, flip flops, a baggy t-shirt and a headscarf and shop amongst the 'suits' at 5pm and not lose a shred of dignity.
2) It's actually possible to have both constipation and diarrhoea at the same time. It's like some kind of hideous pooping miracle!
3) Tanai loves me even when I am bald, have tonnes of coldsores, chronic constipation and I'm cranky from the steroids. The only way is up!
4) If I get to the end of the day and the only thing I've achieved is to stay alive, that's not a day wasted. Yes, I've definitely learned the art of slowing down and putting less pressure on myself. Long may it last.
I have to give a huge shout-out to those wonderful people in my life who have helped me get through this tough first phase of treatment. To the amazing friends who have sent or given me thoughtful cards and gifts after researching chemo side effects: nail oil, hand cream, headscarves, ginger sweets and tea, the biggest bucket of Epsom salts I've ever seen, a chilly towel all the way from Australia, homemade cheesy bikkies, gorgeous earrings to help me rock the hairless look, and so much more. To everyone who has popped over to our little flat to visit, some driving almost 6 hours for the privilege, others coming all the way from Australia, many bringing food and lolz. To everyone who has texted me jokes, messaged me support, reminded me they're thinking of me. These things have meant a great deal when you feel as isolated as I have felt at times. To my patient, supportive, caring colleagues, who put up with my regular TMI, have sanitised the heck out of the office, and who go and work in another part of the building when they've got a slightly sore throat. Our daily interactions at work have most definitely kept me sane through this. To the four incredible people who accompanied me to rounds of chemo and gave Tanai a break: Martin, Dom, Caroline and Siobhan. That really was above and beyond and I will be forever grateful. To mum for batch cooking and filling my freezer with delicious food, and dad for sending Tanai presents and reminding him he's awesome. To my uncles Paul and Paddy and their families, for providing Tanai and I with weekend respite before and during chemo. Getting away from the eye of the chemo storm was hugely important for our mental wellbeing, so thank you. I won't go on, partly because there is much more treatment to come, and I'm sure I'll be reaching out for further help and support, or grateful when it's offered unasked.
I've already had a couple of 'helpful' naysayers question my decision to proceed with this treatment, especially as I'm known for my holistic approach to health and my love of natural supplements and therapies. Aside from the fact that it's 100% my own decision how I proceed with tackling cancer, there's also the not so small matter of science. Eating kale does not get rid of cancer. Chemo does. End of.
If you've made it to the end of this post, well done! It was epic, I know, but the last six months have also been epic, and, like childbirth, I suspect that if I don't write about the experience, I'll forget the horror of it all. Onwards and upwards to the next stage of kicking cancer's arse!
