One thing a lot of people ask me at the moment is what it’s like to go through chemo. From what I’ve learned talking to other cancer patients it differs for everyone, but here’s a lowdown for those who are interested on my typical two-week cycle.
Monday, Week 1 – It’s chemo day! I put on my dinosaur pants and monster socks and make my way to the Macmillan Centre for 11am, usually after doing a bit of last minute laundry or shopping or whatever for the week ahead. I give them a blood sample so they can look at my blood count – this lets the nurses know if I am safe to have chemo today, based mostly on my white blood cell count. If my reds are low they’ll schedule me for a blood transfusion, but if my whites are too low then I can’t have chemo for another week. After the blood test (with the gentlest nurses ever – no “sharp scratch” here!) I head up to floor 2, which is a beautiful atrium surrounded by art and full of more amazingly nice nurses. Here I wait for my portacath to be accessed with a special needle – this is where the drugs will go in and blood should come out. Unfortunately my portacath is a bit awkward when it comes to getting blood back, which the nurses have to do to make sure all the drugs will go in the right place – getting it to work usually involves some acrobatics from me, but we always get there in the end. Now that it’s working, the portacath is connected up to two drips. For half an hour I get pre-chemo drugs – a million tonnes of steroids and some glucose. Then the chemo begins. I’m on a 3 drug regime called FOLFOXFIRI – this starts with half an hour of irinotecan, which makes my nose run like anything and my head feel a bit woozy. Then I get two hours of oxaliplatin and a mix of vitamins and stuff intended to make the drugs work more effectively. Usually my chemo buddy Cat has turned up by this point and we sit and chat through the wooziness, or work on art projects, or play silly space-themed card games. Finally I get a half hour flush of salt water and some more glucose, and then I get connected up to my bottle of 5FU (or “Five Fuck Yous to Cancer”, as Cat and I have taken to calling it), which will feed me the final drug over 48 hours using an amazing vacuum system. By now it’s about 6.30pm, and we head home and eat some pizza or something. I won’t sleep – I’ve had too many steroids – but that’s ok because Netflix exists.
Tuesday, Week 1 – At the beginning I would get super-tired on Tuesdays, but as the chemo regime has continued I’ve acclimatised a lot, so on Tuesdays I get on with some projects or work and take a loooooong nap in the afternoon. Sometimes my lovely boyfriend comes over and we go on a little Pokehunt and watch Star Trek. This will change a bit from next week when I start going to classes at UCL in the afternoon, but I think I can handle this in terms of energy levels because I’m a badass. Oh, I also get mild neuropathy for a couple of days, which is a tingling sensation in my fingertips and throat whenever I touch/drink something cold. I find it more amusing than annoying, but I’ve been warned it could get worse as winter sets in and the oxaliplatin builds up in my system.
Wednesday, Week 1 – Another day of resting, but again I’ve acclimatised a lot and usually get on with some work in the morning. After my afternoon nap I head to the Macmillan Centre to have my portacath and 5FU bottle disconnected. This is a great relief – it is really quite stressful having to remember to carry the bottle everywhere with me, and the nurses have told me some horror stories about patients who forget and rip out their portacath needle accidentally!
Thursday-Saturday, Week 1 – By the end of the week my energy levels start returning. I go to a meditation/yoga class on Thursdays, and often find I’m keen to cook for my housemates. Again, from next week there’ll be afternoon classes at UCL to attend – bring it on!
Sunday, Week 1 – Today I have to start injecting myself in the stomach in order to make sure my white blood count stays high. Yay! At least I don’t have to inject myself with Warfarin, which stings like anything. The white blood count meds can barely be felt as long as you find a nice roll of fat to stick ‘em in!
Monday-Tuesday, Week 2 – By the start of Week 2 my energy levels have more-or-less returned to normal. Normal for a normal person anyway – perhaps about 75% compared to pre-chemo Gill, but that’s ok, although I sometimes have to sleep all of Monday if I’ve had a busy weekend. Enough to go climbing or do some weights exercises, long walks of an hour or more etc. Not quite enough for cardio exercise yet. However, this is usually the time my nose starts bleeding (not so bad as side effects go) and my mouth will have become quite sore (although again, I get off pretty lightly when you consider the long list of chemo side effects I could have!).
Wednesday, Week 2 – Wednesday is Oncology Clinic day, when I have to go to the Macmillan Centre and see my team – oncologist, pharmacist and nurses. We discuss any side effects I’ve developed in the past cycle, check all my internal organs are functioning properly and order my chemo drugs for the next Monday. So far my oncologist is impressed that I appear to be breezing through what he himself describes as “super-strong chemo”. (My oncologist is great. He let me get a tattoo the week before I started chemo, and his opinion on drinking is “have a binge if you want to see what it feels like! You probably won’t ever want to again, but hey – you’re on chemo so you’re at least going to need a beer every now and again!”) Oncology Clinic is almost always overrunning, so I get home pretty late.
Thursday-Sunday, Week 2 – Aaaaand… that’s about it. As the week goes on my energy levels get higher, although the white blood cell stomach injections give me back pain from Thursday onwards as apparently your white blood cells are made in the base of your spine. The nose bleeds and sore mouth usually start to tail off over the weekend, so that by chemo Monday I’m usually felling pretty good, and then the whole cycle starts again…
So, I hope that was enlightening as to what chemo is for me right now – basically, nowhere near as bad as I feared and I’m doing my best to take advantage of the good days! I’ve been feeling better and better ever since I started, which I hope is a good sign as I head for my mid-regime scan tomorrow. As ever, wish me luck dudes.
Edit – I actually got my scan results today and they show I’m responding really well to the chemo and the cancer is shrinking. Woop woop!