Finally the Endopredict test result came back and it confirmed that there is definite benefit to me having chemotherapy. Chemotherapy is a pretty brutal and indiscriminate treatment which brings with it significant risks, but it also brings the very real chance that it will stop the cancer coming back. This more detailed test of my cancer and how it is likely to behave showed that the chances of the chemotherapy causing me long term harm are far lower than the cancer doing the same thing.
Last Monday I saw my NHS Oncologist, and I got myself booked in for chemo the next day. She talked me through all the potential side effects of FEC-T (it is a very, very long list), the drugs I’d be taking to counter these effects and I signed the consent form. Then off to have a blood test and ECG. My blood will be taken before every cycle so they can keep a check on things like my liver function. And the ECG was to check my heart is working healthily. This is because the E in FEC-T stands for epirubicin, and one of its (rare) side effects is long term damage to the heart. On a lighter note, it gives you bright red wee.
It was my first ever ECG, and the technician’s room was tiny, more like a broom cupboard with an examination bed. There was a small radio on the shelf playing classical music. I wasn’t sure if the music was for patient benefit or the technician, but anyway…. Over the airwaves came a very tinny version of the music from The Onedin Line and I was immediately transported back to the Sunday teatimes of my childhood.
The first round
On Tuesday, my mum and I headed off to the hospital for my first round of chemo. There will be six rounds in total, each three weeks apart, so this was the first step in an eighteen week marathon. I had previously visited the chemotherapy suite and met the team of nurses, so felt confident about what to expect.
Having the chemotherapy itself is pretty straightforward. After sorting out the cold cap, the nurse simply put a cannula in my left hand and then over the course of an hour I was administered saline, steroids, fluorouracil, epirubicin, cyclophosphamide and more saline. I’d had plenty of fluids in the morning so my veins were plump and well hydrated. The nurses are super vigilant, as in rare cases patients can have an allergic reaction, or the drugs can leak and burn the skin. At the same time I took my first anti nausea tablet, Emend. Fortunately, it all went well.
I also saw some familiar faces in the chemo suite, my breast care nurse dropped in, and the atmosphere was relaxed and chatty. It could almost have been a manicure shop.
I have chosen to try the cold cap which lengthens my time in the suite. Total hair loss is guaranteed with my cocktail of drugs (including eyebrows and eyelashes – not looking forward to that. But hey, at least there will be no waxing and shaving of all the other bits for a few months) but the cold cap offers a 50% chance of partially retaining head hair. I love my hair and I know losing it will be one of the toughest parts of this cancer story for me. Cancer treatment really is a bugger, when you’re at your lowest ebb physically and emotionally it then robs you of your identity.
The cold cap is a silicone cap which fills with fluid at below freezing. I had heard horror stories about the pain and that some patients can not tolerate it. You have to wear it for near on three hours, and I was prepared for lots of deep breathing and visualisation to get me through the first twenty minutes, after which time apparently it is tolerable. I’d taken paracetemol to help with the pain, and the nurse wrapped me in blankets. Well, either the machine was broken or I have a very high pain threshold. It was uncomfortable but ok. But then, I am the woman who has chosen in the past to have ice baths after training runs.
The cap has a tight, fetching chin strap which made eating my chunky sandwich quite a challenge. Must take a thinner lunch next time.
Now I just wait to see if my hair starts to fall out. If it does, it will be next week. In the meantime, I was advised to wash my hair just once a week. Yuk. I’ve been wearing headscarves to cover my dirty locks. I washed it today and I felt like a new woman.
To counteract the side effects, I was given a bag of drugs. Five different drugs. One of which was injections. Yes, injections. It’s a lot of fun injecting yourself in the tummy when you’re nauseous and your brain is mushy peas. But I’ve concluded that belly fat has no nerves as the injections don’t hurt at all.
I bought the dental kit on the right from a great website, Live Better With Cancer. Touch wood, no ulcers yet, but I’m ready if they come.
Where did I go?
All my online research tells me that most cancer patients are terrified of chemotherapy. I was no different. Jennifer Saunders described chemo side effects as the worst hangover ever. Decca Aitkenhead described it as being dead without having actually died. But, I also found plenty of stories from cancer patients who found chemotherapy tough, but doable (those stories don’t make for good headlines I guess).
My first week was undoubtedly tough but I think I’ve been relatively lucky. I slept for five days and nights. I could not stay awake for more than a couple of hours. I have never known such low energy. I couldn’t concentrate and, at my lowest, I couldn’t even complete a sudoku puzzle. I put on 5lbs. I lost 5lbs. The nausea comes in waves, but not bad enough to staunch my healthy appetite. My old friend constipation made an unwelcome return. Acid reflux is today’s treat. But I was well enough to look after myself and the cat. And she’s loving this, there’s a permanent lap to sleep on!
Most distressing of all is that I have completely gone off tea. Don’t even like herbal teas. Pineapple juice and sparkling water are my new favourite drinks.
The weirdest side effect is you feel like you’ve lost yourself. Your brain, your emotions and your body are completely alien to you. But today I’m back – wobbly, weak and weird, but I feel like Alison again.
The drugs can have a cumulative effect, so I may be more impacted by side effects as the treatments progress. Fingers crossed that’s not the case.
Box set failure
This is the cat and me competing to see who can stay awake longest. I lost.
I have so many box sets to watch, and I’m failing at this simple task in my soporific state. But I’ve just started Better Call Saul, which is rather good (although I suspect most of the plot twists are passing by my addled brain).
In preparation for being at home, I bought some yoga dvd’s so I can practise yoga at home. I tried a half hour gentle, restorative session yesterday. Had to have a lie down to recover afterwards!
Thank you, thank you, thank you
Yet again I need to thank all you lovely people for your texts, mails and messages of support, for calling me, for visiting, for taking me for walks, for remembering me. Even the simplest of texts can lift my spirits enormously when I’m in the dark, surreal, unkind place that is cancer treatment.
Please excuse any typos, or if this is an especially rambling post. Brain definitely not operating at 100% x