The hard part...
I didn’t want chemotherapy, I really, really, REALLY didn’t want it.
Sat in the room with my consultant after my biopsy waiting for his prognosis I was clenching every part of my body so tightly that I could have crapped out a diamond. I had managed to convince myself that I might not need chemo (thanks in part to a bit of false hope given to me at an earlier appointment) so you can imagine how absolutely gutted I was to find out it was on the cards… I was absolutely terrified of becoming “sick” when up to that point I felt generally pretty ok. I didn’t want Frank to have to see me like that.
I didn’t even know what chemotherapy is or how it works. Why would I, never having been up close and personal to the Big C before? So if (like me) you’re a little unsure of what it actually does, let me summarise -
Chemo is a type of cancer treatment that uses anti cancer drugs (there are many different types) to target fast growing and dividing cells (like cancer cells) and stop them reproducing. Different types and grades of cancer are treated with different kinds of chemotherapy drugs, and the ones they use against breast cancer are some of the most brutal out there. It isn’t targeted therapy, so it works through your whole body and as it does, it tends to also destroy some of your other fast growing cells. Healthy ones such as hair, nails, skin, bone marrow all take a battering in the wake of its wrecking ball. It’s an absolute poisonous bastard, but a necessary evil.
I met with my oncologist the first working day in January 2020 to find out what he had in store for me. I am super lucky to have amazing private healthcare through work (including enhanced cancer care I might add… every cloud and all that) so I had access to the best care I could have asked for. We talked through my options, the different drugs, and by the end of the appointment I had signed my consent and had a start date for the following Thursday.
My treatment was split into two phases, the first part was 3 rounds of Epirubicin Cyclophosphamide (EC) or the “Red Devil” as it’s known, followed by another 3 rounds Docetaxel. I was warned early on that the Docetaxel is brutal and a lot of people can’t handle the side effects, so my other option was 12 rounds of it’s gentler sister drug, Paclitaxel, but I just wanted to get it over and done with so I opted for Docetaxel and prayed to the chemo gods that it wasn’t as bad as they said.
For someone who was previously shit scared of needles, the thought of 6 IV administrations terrified the bejesus out of me, but the thought of a PICC line was even worse (my team wanted to give me a line or a port as EC cripples your veins and they didn’t think I would be able to complete treatment without one) so I knew I had to get over my fear and just crack on. It’s amazing how quickly you get over a fear like that when it becomes your norm. The poor veins in my left arm have taken an absolute battering over the last 6 months, let me tell you (because of my lymph node removal, I can’t have any needles in my right arm) they are that damaged it took 20 minutes and two attempts last week just to get a blood sample.
Each drug was to be administered every 3 weeks to give my body chance to try and recover from the short term side effects of each round. Just as I started to feel slightly human, back I went for another dose and nosedived straight to feeling like complete shit again. Chemo kills all your fast growing cells, not just the cancerous ones, and the damage it wreaks is relentless which is why it is so rough on you and makes you very poorly, very quickly. It also affects your ability to produce white blood cells which means your immune system is practically none existent. I was given an injection in my stomach after each round to help stimulate my bone marrow and strengthen my immune system. My friend (who is a nurse) came to do my injections for me as I flat out refused to do them myself, and thanks to her practised hand I hardly even felt them. The same can’t be said for the bone ache I experienced each time which made my whole body hurt right through to my core.
So, on to round one… the Red Devil. My first session passes quickly, the nurses and my oncologist are all amazing and I float home on a wave of positivity. “Well ,that wasn’t as bad as I thought it would be” I tell myself on the drive home… feeling all kinds of smug at my bodies ability to take chemo in its stride. Two hours later I was curled up on the bathroom floor shaking, pouring with sweat, feeling sicker than I’ve ever felt in my life. For someone who (apart from a healthy appreciation for Prosecco) has always been a bit boring and never taken any sort of narcotic, I mean, I don’t even like taking paracetamol for a bloody headache, it was all a bit much. Holy shit my body did not know what had hit it.
EC is brutal (hence it’s nickname), it’s so brutal that if it touches your skin it would burn…. So imagine what it does to your poor veins. Mine became so sore and irritated I could hardly move my arm, I couldn’t even roll my sleeves up on my left side as my forearm was so painful. Each session became more difficult to get bloods out and a cannula in (the record for most attempts on one day was 6) but still I refused to get a PICC line. I wanted to be able to go home and forget about being a cancer patient, I didn’t want another permanent reminder of my predicament hanging off my bicep, the bald head and mastectomy scar was enough thank you very much.
I was told from the word go that my hair would fall out (with EC its pretty much a given), and that it would do so pretty much straight away, around the second week of round one. I could have a go at cold capping if I wanted (I didn’t) but there were no guarantees and to be honest, I just couldn’t be arsed with the extra hassle and discomfort for something that actually only has about a 50% success rate. So I prepared myself by snipping my locks into a super short bob and armed myself with the knowledge that the minute the first handful came out, I would be taking my newly acquired clippers and getting rid of the lot. True to their promise, two weeks after my first infusion, I ran my hand through my hair and came away with a handful. I’m not sure what I was expecting, but I ignored that first lot, telling myself it wasn’t that bad and shoved my hair back in a bobble and went on my merry way. The next day and two more handfuls later, I decided I couldn’t just watch it fall out, so I enlisted the help of my fantastic husband and shaved it off. It was a heart wrenching realisation, this was actually happening. I cried, he almost cried, but the relief I felt once it was done was immense. I had taken control of the situation.
I think the hardest part of hair loss for me has been my eyelashes. Pre chemo I had the thickest, longest lashes you ever did see… honestly, I’m not exaggerating, people used to ask me all the time if they were extensions. You can hide a bald head under a wig, get your eyebrows tattooed on (which I did by the way and would thoroughly recommend!) but it’s very difficult to hide the fact you have no eyelashes. I stopped wearing mascara the minute I started treatment in the hope that touching them as little as possible would encourage them to stick around for as long as they could, but by the end of round 6 I only had about five little stragglers left hanging on to my top lid. On a plus note, I can now do winged eyeliner like a pro, which has been a make up nemesis of mine forever. There aren’t many perks of chemotherapy, in fact I think there is just one…. When you lose your hair, you lose ALL of it. I’ve saved a fortune on waxing and shaving apparatus over the last 7 months, and I’m leaving lockdown looking pretty much the same as I did pre covid thanks to spending it hair free. As someone once said, there is smooth, then there is chemo smooth, and I wasn’t all that sorry to wave goodbye to my downstairs hair.
My skin took a hammering those first few weeks of chemo as well while it tried to figure out what the fuck had hit it. All of a sudden, I had a dry, sensitive, oily, spotty visage that I had no clue what to do with. After a couple of meltdowns about the sort state of my face, and wearing foundation about 2 inches thick, I took myself to buy some new skincare and booked in for a facial. Luckily, thanks to a lovely lady in Kiehls, we managed to find a new routine that really did help calm my adolescent like breakouts. It didn’t do much to help the slightly grey colour my complexion had taken on, or the day of the dead esque black circles around my eyes, but that’s what make up is for eh? And BOY have I gotten good at doing my make up this last few months.
I struggled to embrace my new appearance, I either hid away from the world, or went out wearing my wig and warpaint to avoid the looks of pity, and the stares that reminded me just how crap I looked, and how sick I was. If it wasn’t for Covid rearing it’s ugly head, I probably never would have left the house with a bald head, but all of a sudden it was more important for people to see I had cancer and keep their (2m!) distance than it was to hide it.
Whilst we are on the subject of difficult changes to your appearance, say hello to steroid bloat. To help combat nausea and reduce the risk of a reaction to the drugs, I was given a ton of steroids to take just before and after chemo, making my face swell up like the moon and my cheeks flush so much that the heat radiating off them made me actually sweat. And that’s not all in the ‘roid goodie bag… aside from the fact I was swelling up so much I couldn’t get my wedding ring on or off, I was absolutely WIRED. I couldn’t sleep AT ALL which really isn’t great when your entire body is already completely wiped out from the devastating effects of chemo, but the fatigue was (and still is) crippling.
I thought when I had Frank, and the sleep depravation of going through the newborn stage, or returning to work a year later and juggling a full time job, travelling, and a one year old was tiring, but holy mother of god, that was just the warm up. I have never felt as exhausted in my life, so exhausted I didn’t even have the energy to finish my dinner some nights. I literally fell asleep half way through a slice of pizza one time. Naps don’t help, and it’s impossible to get a good nights sleep, so your energy just ebbs away. Nipping to the loo for a quick wee came with a 30 minute recovery time, and as someone who has lived their life at 100mph, I had to slow down that much I basically just stopped. It was soul destroying.
With the fatigue comes chemo brain. Those of you with kids will possibly have encountered “baby brain” which is bad enough, but chemo brain is (quite literally) baby brain on steroids. I have always liked to think I’m pretty witty, I like banter and I can hold a decent conversation, but chemo brain stripped all that away from me. I was absolutely crippled with the inability to engage my grey matter. I couldn’t hold a conversation, I struggled to get my words out, kept forgetting what I was saying, I felt like everything was muffled and I couldn’t make sense of anything. And while it has improved greatly since finishing chemo 2 months ago, it’s still very much present. The other day I went to put some fuel in my car, and forgot how to open the petrol flap. I literally just stood there staring blankly at it for about 5 minutes willing my brain to work to try and remember how to open the bloody thing. I even opened my door to check there was no button under my steering column (despite never owning a car that opened that way) before remembering I just needed to push it slightly so it sprung open. The same way I’ve opened a petrol flap on every car I’ve owned for the last 10 years of my life. It sounds funny now, but I could have cried in frustration at my stupidity.
Although my taste buds changed slightly during the first half of my treatment, and my mouth was a bit sore, it wasn’t too drastic. I went off booze completely (probably not a bad thing), and either lived off beige food to dampen down the nausea, or craved fresh fruit and veg constantly. On the days I could stomach eating something, I tried to fill every meal with as much goodness as I could to get on my plate to try and fuel my body with proper nutrients. All that stopped halfway through chemo when they flipped my drugs and my palette went from green queen to hungover teen over night.
Everything tasted like metal. I was cleaning my teeth about 10 times a day, not just because dental hygiene is MEGA important when going through chemo, but also because my mouth tasted that dreadful it was as though something had crawled in there, taken a crap in it, then died and rotted in their own filth. I couldn’t taste anything properly, my mouth was blistering with ulcers so bad it was hard to talk, and my heart burn got so bad even water felt like it was repeating on me. My normal healthy eating went out the window and my new priority was just finding something, ANYTHING, that I could actually eat without wanting to cry. I wanted something with a strong flavour to overpower the dreadful taste in my mouth, but anything with a strong flavour made my mouth react so badly the lining would literally peel away. Even more frustrating was the fact I was permanently starving thanks to the 5 x increase in steroids I had been given to help my body cope with the Docetaxel. There was much pizza consumed in that second part of my treatment. MUCH PIZZA.
After 3 rounds of chemo, I was already a little bruised and battered so when I switched meds, it tipped me over the edge. I had been prewarned that Docetaxel was going to be tough but I completely underestimated just how much my body might struggle with it, even if I was prepared mentally to soldier on. Just 3 days after my first lot of the new drug my temperature spiked. Me being me, and not wanting to over react or be a nuisance tried to ignore it in the hope that it would go away. By the end of that day, as I hovered around the 39 degrees mark, it became quite clear that it wasn’t going anywhere and I better call my nurse for advice.
Being admitted to hospital with a high temperature during a global pandemic was not fun. The shit had just hit the fan with covid, the country had just gone into lockdown and this was uncharted territory for my treatment team. What was protocol? They didn’t want me to go to a covid ward as they didn’t think that’s what was wrong, and they were worried I was neutropenic which can lead to sepsis and get very serious, very quickly if not treated straight away. It was decided I would head into the ward up at the private hospital I was being treated at, I would have my own room anyway, and they had much quicker access to resource. My bloods came back with a neutrophil count of 1.5, so although I wasn’t actually neutropenic, I was right on the border (anything under 1.5 is classed and neutropenia) my immune system was dangerously low and unable to fight a thing. In a bloody pandemic. I was admitted in my own quarantine and drip fed fluids and antibiotics for the next 24 hours until they were happy I was as ok as could be and then they sent me on my way.
The verdict was my body and I were completely exhausted. A combination of the new drug and overdoing it had nearly broken me. I was naive, and I had no idea just how fragile I actually was.
Round 5 came about and my oncologist asked me if I wanted to continue with Docetaxel (2 x 3 weekly treatments) or change to Paclitaxel (9 x weekly treatment) which would be a lot kinder to me and my body, but I declined. I was so close… there were only 2 more infusions to go, lets just get it out the way and I promise I’ll behave better and rest more. Also, there was NO WAY my veins would have stood up to 9 weekly cannulas at that point, every round it was getting more difficult to find a vein, and I was still adamant I wasn’t having a PICC line.
The last two rounds were tough. The nerve damage in my fingers and toes was horrible and I was struggling in particular with my hands, even things like getting dressed was a pain in the arse as I couldn't use my fingertips properly. I had nothing left to give, nothing left in the tank, but I managed to stay positive knowing I was so close to the end. I had my blinkers on, there was light at the end of the tunnel, and I was lucky. Lucky that I had been able to continue my treatment. As covid took hold of the world I was seeing people I knew, friends with similar diagnosis, who were having their treatment plans changed or paused as the NHS was stretched to breaking point.
Going through it all I don’t think I realised just how ill I actually was. It’s only now, that I’m sat writing about it that I can see the full picture of just what my body has been through. It’s only been two months since my last round so many of the side effects still linger, and will continue to do so maybe forever which is an adjustment I’m slowly trying to come to terms with. I’ve had to slow down and be kinder to myself. I’m trying to rebuild my energy and strength gradually from the ruins left behind and I get so frustrated with myself that I’m not like I used to be. I feel sad for the girl I was, and I miss her. But I’ll never be that person again… going through all of this has made me stronger than I ever thought possible and I’m proud of the person I’ve become. It has tested me and pushed my to my limits but it was only temporary.
So for anyone else about to start a similar journey, yes, chemotherapy is tough. It can be soul destroyingly difficult. But it’s not forever… and it saved my life.
Until next time… check your boobs