The New Normal

It takes a while to adjust to the fact that you’re a cancer patient. A scary while within which you can’t quite believe what is happening to you. But cancer is never a short-term thing like having a cold or a broken leg and I’ve found that you have to adjust, and all of a sudden being a cancer patient seems like the new normal. Today I have a meeting with my oncologist – but that doesn’t seem like an unusual thing to have anymore – I’m now a person who has an oncologist. That’s just what’s happening. On Monday I might be going back onto chemo, but even chemo seems like it’s just part of the new normal of my life. Sure, there’ve been bad weeks – but doesn’t everyone have a bad week once in a while? 

It’s confusing because the chemo is working so well that most of the time I feel perfectly healthy, apart from the side effects of the chemo itself. In fact, cancer has become so normal that sometimes I forget I have it at all. Since being diagnosed I’ve been to festivals, raves, parties, weekend breaks in the countryside, storytelling classes, UCL courses, on long walks and out to pubs and meals with friends. I drink less than I used to and I get tired quicker, but in general my life hasn’t changed all that much, apart from the chemo and oncology regime which has just kind of faded into the background and become part of what I do these days. Even the uncertainty is something I’ve become familiar with even though that’s the scariest part. Will this year bring surgery? Radiotherapy? More chemo? Different chemo? At the moment I don’t know – and I suspect my oncologist doesn’t either. I have had to get used to taking each day as it comes, so I am grateful for all of them. That is my new normal.

So Happy New Year dudes. None of us really know what’s going to happen in it, but I hope it’s a good one for both you and me. Big love.

Chemo!

img_20160720_153030One 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!

Learning to look after myself

I’ve never really paid that much attention to the idea of looking after myself. I’ve long been a burning-the-candle-at-both-ends workaholic who viewed rest as something other people did and that I needed only rarely. I haven’t had a holiday in years, and when I have taken holidays I’ve usually been doing something high-stress concurrently, like skippering a yacht, or producing an Edinburgh Fringe show. I worked night shifts to fund my way through my masters, catching an hour’s sleep here and there in whatever common room I could access that was quiet enough. I headed off to the Central African Republic to continue my PhD fieldwork five weeks out of major lung surgery. I’ve pushed myself, more and more over time, to be “that person” who does everything – works hard, parties harder, sails in the summer and makes theatre in the winter. And now, all of a sudden, I’ve had to stop.

A short walk in the sunshine on my first holiday in years.

And by stopping, I’ve discovered something amazing – self-care. You see, cancer makes your life difficult to predict – it’s a battle that you basically have no control over. People say things like “you’re a fighter”, but really it’s a matter of doctors putting chemicals in me and waiting to see what happens. I can’t help the chemicals other than to whisper softly to them “good hunting”. This week I wasn’t allowed the chemicals because my white blood cell count was too low. The nurse assured me that it wasn’t a matter of me pushing myself too hard the week before – it’s just the chemicals they’re putting in me are super toxic and sometimes my body needs a break. But the unpredictability of chemicals and blood cells and treatment regimes can be offset somewhat by the establishment of a predictable self-care routine. My entire life, right now, has become entirely dedicated to working out what will make me feel good from day-to-day, and then enacting that thing. It might be staying in bed and watching Game of Thrones, it might be going for a walk in the sunshine, it might be making myself a really nice sandwich. But whatever it is, I do my best to find a way to do it.

And I’ll tell you what, it’s amazing. Many people have commented on how good I look, how positive and upbeat I am, how I’m basically just myself despite the huge, scary thing that’s happening in my life. A huge part of that stems from my new found commitment to self-care. I’ve never felt so attuned to what my body is telling me about what it needs. Keen as I am to see people and get on with things, I’m learning to plan dedicated rest days into my life, to sleep when I feel I need to without any guilt, to take advantage of the Macmillan Centre’s amazing complementary therapy service. And it all makes me wonder why I’ve never tried to do this before, even in the most minimal of ways. How focused our society is becoming “that person” – the mythical person who does everything awesome going and never needs a break. How little time we plan just for working out what will make us feel good each day and then doing it without feeling guilty about doing something for ourselves. So take some time out today and do just that, I urge you. Especially if you’re a burning-the-candle-at-both-ends workaholic like I was. I wish I’d done it sooner! And while having cancer really super sucks, discovering the power of self-care has been really super awesome. It’s amazing what difficult diseases can teach you about yourself.

On Luck

Gill and elephantsThis is me just a month ago on my 32nd birthday, gazing out across the impressive Dzanga Bai at some 30 odd elephants splashing about contentedly in the mud. At the time I’d been waiting a week for my insurance company to arrange my repatriation home from the tiny town of Bayanga in the middle of the Central African rainforest, during which period I agonised constantly over whether the decision to abandon my work and return home had been the right one. I was worried I was being a hypochondriac, that I wasn’t exercising the kind of toughness necessary for my anthropological fieldwork, that I was giving up my last opportunity to get any really significant research done. As it turned out, I got out in just the nick of time – if I’d delayed even a few more days it could have been disastrous. In this, I consider myself to have been incredibly lucky.

It’s an odd thing, to stare both good and bad luck in the face at the same time and to wonder very seriously which of the two is on your side. Over the past few years I’ve proved to be a bit of a medical enigma – I’m a short, non-smoking woman whose lungs sometimes mysteriously collapse; I’m a 32-year-old who’s just been diagnosed with advanced bowel cancer, a disease that doesn’t normally affect people under 50. With regards to both these conditions, the only explanation doctors have been able to give me for why I’ve ended up with them is “just bad luck”. And yet, at the same time I feel like I’ve been extraordinarily lucky – I seem to have an uncanny sense for when I need to get the hell out of whatever remote part of the world I’m in and on a plane home. Which means I’m still here, and I’m still fighting on. I’ve seen some extraordinary things and had some incredible adventures over the last 32 years I’ve been drifting about the planet, and on the way I appear to have made the most amazing friends in all the cosmos.

I’m now reaching the end of my first chemo cycle. It was, thankfully, nowhere near as bad as I was expecting, but equally it’s just the beginning of a very long journey and I have no illusions that it isn’t going to be a tough slog whose ultimate outcome is also going to come down, at the end of the day, to a whole lot of luck. But whichsoever way that luck falls, in the meantime I intend to try and focus on whatever good fortune I find in the day-to-day as hard as I can. Sometimes, I know, that’ll be difficult to do. Sometimes I’ll feel abandoned by fortune and then in another breath I’ll feel like I’m wrapped in its arms. Because really, luck is just a narrative device that humans use to tell their stories, and I have a feeling I’ve got a whole load of stories in me yet.