Devil's Haircut

So I cut my hair yesterday. It was falling out again. It's the sixth time I've done the clippers and razor routine. Six times now I've seen my hair falling into desultory brown clumps in the sink. I have saved a fortune on barbers though.

It's colder today, so my hat doesn't look out of place as I walk to the bus to go to Bart's where I'm writing this now. Waiting on those same yellow uncomfortable plastic chairs for my number to be called for another blood test, before another round of chemo. What used to be horrific is now mundane. It's true that given enough time you adapt to anything. I'm a pro at this now. I can see the patients who are new to this looking rightly scared and confused. I'm thinking about where to get my lunch from.

To get everyone up to speed since I last blogged here. My last chemo plan finished in April. It was hard going but it seemed to work. My AFP tumour markers went down to 4 and that was enough for my consultant to wave me away for a few months. July came around and on one brief hot sunny day I was called in to the same blank anonymous consulting room to be told my tumour markers were on the rise again. This cancer I have, a weird derivative germ cell cancer, has more lives than a cat and the staying power of a cockroach after a nuclear attack. It's been poisoned, cut at, poisoned, blasted and poisoned again and again. It's still around. The kitchen sink has been thrown at it and still it survives, it's the cancer version of Piers Morgan's career. 

This is Chemo treatment number six. A mixture of Irinotecan and an oral medication called Temozolomide. Luckily unlike last time it's all done as an outpatient. The waiting maybe long (I'm 41st in the queue for the blood test today) but at least I can go home to my own bed and not get woken up for obs at 06:00. I'm on cycle 3 of 4 that have been booked in. Tomorrow I'll be up on the day ward, in a big purple chair for the short I/V drip. My veins are more shot than a career junkie's so I've a Portacath  (internal line, feels like a third nipple), which has been a godsend. I don't get the cannula freak-out every time now I go for treatment, I know it'll work. 

Soon it'll be three years since diagnosis (I'll do another blog for that occasion). A bloody long time and I'm so bored of this now, but I know that's a privileged feeling that's not afforded to all. Anyhoo my number has just been called, best get on with it. 

Recently I've...been watching the new Bojack Horseman, still as funny and bleak as ever.... listening to Fortunately podcast by Jane Garvey and Fi Glover, a gossipy fun look inside BBC radio...reading Oliver Sacks On the Move, an amazing account of a life well lived.

 

 

Brutalism

On Friday I found myself in Barbican library. Once again I had time to kill after my third blood test that week. My platelets and haemoglobin counts had bottomed out and my doctor's were discussing whether to give me a transfusion or not. In this dead time I could have wandered around the shops looking at things I didn't need and couldn't afford, but I was knackered so went to the Barbican.

I looked out at the Brutalist towers and central pond designed by Chamberlain, Powell and Bon, and shivered. It was meant to be a Utopian post war living and arts space, but ended up a confusing jumble of walk ways and imposing towers. It's supposedly the highest concentration of wealth in the country as the flats here offer unrivaled access to the trading floors of the city and a nice Waitrose. Unlike the other famous Brutalist pile The Southbank Centre which does it's upmost to be welcoming and open, the Barbican always seems closed off and uninviting. This is a shame as it has a brilliant concert hall, cinemas and a great library, with a fantastic music section. The brutal concrete towers matched my mood though, dark and uncomfortable.

I'm in between chemo sessions two and three now. What's called the hard yards. I'm constantly tired and irritable. Sleep at night is disrupted but does mean I'm listening to a shed load of podcasts. Days are spent shuttling to and from hospital for appointments and then trying to remember to eat while trying desperately not to fall asleep face first in to a pie. My hair is all gone, but that's ok as with my hoody and media glasses I look like about 75% of the blokes wandering around Farringdon clutching an overpriced coffee. My taste buds have also changed making drinking out of the question. I tried a pint of Pride in the Holly Bush in Hampstead and it tasted like bitter soap. 

The treatment itself is bearable though. I'm in hospital for four days at a time. The drugs are all intravenous and with my Portacath fitted in my chest, my arms are being saved from cannulas and my veins from collapsing. All I have to do is to remember not to turn over on my front as I sleep as the needle can be easily knocked. This happened the last time I was in and it freaked me out as liquid was leaking all over my chest. Luckily it wasn't any of my chemotherapy, but just some saline. 

I'll not know if all this grief has been worth it until I get scanned after this weeks Chemo session. I'm desperate for a break from this Brutal regime, but we'll just have to wait and see.

Currently I'm.. Listening to Stormzy 'Gang Signs and Prayer'..Reading Miranda Sawyer's 'Out of Time'... Watching SS:GB

Happy Happy, Joy joy?

So I've been thinking a bit this week of this talk by Dr Liz O'Riordan, entitled " Jar of Joy"

I don't know what you think about TED talks, I can be quite ambivalent about a lot of them. They are very easily mockable. Liz's though is heartfelt and obviously well thought through. We cancer folk are often given labels which don't reflect the reality of our situation. Words like "brave" "fight" and "inspiring" often are default settings when talking about someone with this disease. So it's heartening to know that others can be as scared and as confused as you are, even if they experts in that field.

The hook of the film is the "jar of joy" a little corny I guess but what it's getting at is a truth. I'm heading to Barts this afternoon for another major operation on my right lung to get rid of three cancerous spots. It's pretty much dominated my thoughts in all the waking hours of the day. When something so big, so significant is coming fast at you down the slipway it's hard to find any j "joy" at all. Reminding yourself that there are still good things that happen every day even in the middle of a massive dumpster fire of a life is quite important.

So putting my cynicism aside I've been trying this last week or so to carve out at least one fun thing a day just for me. It didn't need to be a big thing, but it did have to make me smile. I didn't go full on and get a jar but I've kept to my word and got my arse off the sofa and done lots of fun things. From taking my mum out for cake and coffee at the canal side cafe, watching a couple of films at the cinema, making time to see friends to even stopping on Blackfriars Bridge to take in the view as I cycled to work. Moments that I can relieve and relish when I'm in a morphine haze the next few days. 

I guess it's that old adage of counting your blessings. It can be really hard to do especially after over two years of dealing with the most awful crap. Good things still happen though, fun is still about, it might just be crowded out at times by hospitals, drugs and the rest of the Heathrow arrivals hall of baggage that goes with chronic illness.

Hopefully this surgery will be a success and after a time of recuperation on the sofa with Netflix, they'll be many more moments of joy to come. 

Currently I'm... listening to Oliver Burkeman on the power of negative thinking (R4).... Reading Joseph Connelly Men and Women.... watching Planet Earth 2 - dancing bears!