I've just finished my sixth round of chemotherapy. It's been over three years since I was diagnosed and somehow I'm still here. This isn't the end of my treatment, I'm having a CT scan next week with the aim to have surgery early next year. Although I've done my best to stubbornly try and not learn a single damn thing in all that time, there are some things that have trickled in to my drug addled brain. So I thought I'd share them here. They might be useful to you, they might be not, but here they are anyhow.
1. Don't get Cancer
This is the best thing to do. It really ruins your weekend. Just don't get it. Unlike everything else in this post-truth garbage fire of a world, it's as bad as they say it is. It's not overly hyped like a band who've two songs on Bandcamp and have played one solitary gig outside a pop-up vegan stand in Lewisham. There is nothing good about having cancer. Some folk have ridiculously called it a "gift". No it isn't. The new Nigella cookbook, some Technic Lego or a nice blanket is a gift. Cancer is none of these things, so don't get it.
2. Go see your bloody Doctor
If you are unlucky enough to get cancer, or think you might have it, go see your bloody Doctor. Have a strange lump, a cough you can't shift or a lack of energy which isn't just because of a night on the craft beer/gin under a railway arch in Hackney, go see your bloody doctor. Especially blokes, we're terrible at this. We'd rather do almost anything else than go to a GP's. If you're a partner or friend of someone who has these symptoms nag them until they go. You are basically looking for the response "Ok, Jesus if I go to the doc's will you shut up about this FOREVER" The timing of catching the disease is critical to the chances of you staying alive. I just got to my Doctor's in time, and she literally saved my life by telling me to go straight to King's for a scan. I spent the next five weeks in Bart's as they worked tirelessly to keep me alive. Any later and I wouldn't be here three years on.
3. Treatment is grim
There's no getting around this all cancer treatments are horrible. I've had two big surgeries, 20 doses of radiotherapy and 29 cycles of chemotherapy. I've lost my hair six times and now own a wide variety of hats. You will lose/gain a whole load of weight, your favourite food and drink will taste foul because the meds have stripped your taste buds and even getting up the stairs will turn into an attempt on Everest. You can only endure this time and take comfort in anything. You are being poisoned, zapped or sliced open. None of that is a nice weekend in Devon.
4. You need a good bullshit detector
With anything this horrible we go looking for any help possible. Your medical team are rightly focused on killing the cancer and/or trying not to let it spread. You can feel hopeless and hopelessly out of control. Your life is not your own any more but a series of appointments and hospital stays. Ryman's will make a killing from you for all the ring binders needed to hold all the letters and drug guides received. I say do anything that makes you feel better, even for a little while, as any respite is worth it. Although do educate yourself on what has efficacy.
A lot of people look for solace or help often from Dr Google. This is where you need your bullshit detector. There is SO MUCH crap out there about cancer. Daily newspapers will tell what can cause or prevent the disease. The internet is full of powerful anecdotes from people "cured" of their illness by only drinking wheat-grass and coconut oil smoothies. Pretty much all of this is bollocks. Of course eating well is essential to giving you the strength to endure treatment, but look for decent advice. Macmillan on healthy eating has a great section here There's a range of fad diets which do you no help at all, and can be dangerous like Keto, debunked by Anthony Warner aka The Angry Chef here I'd always check with your Nurse or consultant before trying anything crazy. Also if you're going to smoke dope, you have to tell your team as it seriously messes with your tumour marker counts.
5. You will be an arsehole
No escaping around this one. Whatever lies are promoted through positivity campaigns and sun bleached fundraising campaigns, no one I know who gets ill will be nice all the time. I have been in this time moody, angry, difficult, annoying, selfish, unresponsive, hurtful are downright nasty at times. I've shouted at chemo nurses, wished a quick death on co-patients who snore at night and been an ungrateful git when people only want to offer help. Most staff, friends and family will understand, but on better days it's worth reminding them you can also be nice. I've been sending books to friends I'll think they'll enjoy (The wonders of one-touch online shopping) or invitations to go and see gigs or events when I'm well enough.
6. Make friends and seek help whenever you can
No man is an island and all that. You will not get through this on your own. I certainly wouldn't have. I tried for the first year to be as single minded and stubborn, "just plow through this" as I could. Then I had a breakdown and needed help. I got counselling and proper medication for my inevitable depression, sort out other people going through similar experiences and got help with stuff like finances and travel from Macmillan. Your friends and family come into their own at this point. I know social media gets a bad rap (Nazis, rigging elections, Instagram stupidity) but I've found loads of great pals through it who you can share your experience with and/or are up at 3am when insomnia strikes.
7. Sex is a foreign land you never visit
Like a dusty poster in a somehow still open Travel Agents, sex becomes a destination you think you might have visited but can no longer be sure of. A heady mix of enough mustard gas derived chemo to kill a horse and SSRI's, I have no libido any more. I've no interest in it at all, it's a weird feeling. I think in this post Weinstein era it's somewhat of relief not being led around by your idiot. In the past my idiot has made some questionable decisions (not like that, don't worry) . I do miss my idiot though, and I wish it returns (in a reformed manner) when all my treatment is over.
8. Language matters
God this is my bete noire. I hate the language which is used to describe Cancer and it's hosts. Adjectives like "battle" "courage" "fight" and "brave" all get trotted out. This is mostly crap. Especially for the 50 percent of people who don't survive. What they didn't fight enough? So they deserved to die? It's stupid. I never think I'm on a battle field, more like a football or rugby pitch. The two sides are the medical team and the cancer. I am the pitch. I just hope that I don't get completely hacked up in the game and get a break long enough to repaint my white lines once in a while.
9. Keep something for yourself
Your body is getting an absolute pasting but your mind does too. you become solely obsessed with the disease. Your life centers totally around it. You are often not able to continue your passions or interests, work becomes harder or like me I've stopped entirely for the time being. This is really bad because you end up not knowing who you are anymore. So you need to keep something for yourself, something that you can enjoy. It can be anything, early feminist detective fiction, ornithology and knitting is some stuff I've seen people take up. I've got back into cycling. I used to race mountain bikes when I was a kid, but now follow the grand tours (they last for hours each day and are great while you recuperate) and listen to podcasts and go to talks. I'm going to renovate and old touring bike of my Dad's next year and get it back on the road. Anything that reminds you of you is well worth the effort.
10. Don't get Cancer
This is the best option.