Hokey Advice

  1. I could walk around London all day. It’s energising. Being surrounded by people is good for the soul.
  2. Art is important.
  3. Learn to sit quietly. Sit in the dark. This too is good for the soul.
  4. I saw the Rothko paintings at Tate modern. They breath. Those are the best words I have.
  5. I also saw graphite sketches by Peter de Francia, and the photomontages by John Heartfield he made for Aiz.
  6. Art should challenge. Challenge what, is up to the artist.
  7. Then it’s up to you.
  8. Also, the Guerrilla Girls!
  9. Art is vital.
  10. Visit the National Portrait Gallery. If only for Walter Raleigh and Byron and Lady Colin Campbell and Emmeline Pankhurst.
  11. Create.
  12. Produce something, anything, that is yours.
  13. I remember my Dad would wake up early for work. But he’d sit alone, in the dark and be quiet.
  14. He’d do this for up to an hour depending on the time of year. I’d sometimes stumble across him if I was up early or coming back late.
  15. Try to walk outside everyday.
  16. Walking to the car is not walking outside.
  17. We’re strong, ranging creatures. Being outside reminds us of this. I’m trying not to forget.
  18. I’d ask him why he was sitting in the dark, my Dad. He’d usually pretend to be asleep, then stand up and finish the morning.
  19. I thought it was odd, being a teenager. I had no understanding of the need for isolation. Insular, unaware. I remember hating being ignored.
  20. Be less angry. This is something I need to work on.
  21. Sometime in 2013 a red patch appeared on my left pelvis. Also, at the V at the top of my arse. The boundary of the intergluteal cleft.
  22. The intergluteal cleft, like the islets of Langerhans, are fantastical. I imagine quests are decided there.
  23. Gradually, these patches spread. Grew itchy, uncomfortable.
  24. Another appeared on my right pelvis.
  25. They spread. Until they didn’t. Gradually they settled, like blotted continents.
  26. Punch nazis.
  27. There should be no navel gazing or philosophising about this.
  28. They’re going to fuck shit up. No amount of intelligent debate will change this.
  29. Punch all the nazis.
  30. Disagreeing with your point-of-view does not make someone a nazi. Remember this.
  31. It took me a while, decades maybe, to understand why my Dad sat quietly in the mornings.
  32. And also why he never answered me when I asked him about it.
  33. My asking pulled him out of himself. Made him my father again. The uniform was put back on, the weight of his sacrifices, compromises, choices for good or bad, slipped back over his shoulders.
  34. To tell me this would have put some of that weight on me and it wasn’t mine to take.
  35. The time alone was all his. Of him, for him.
  36. Learn to sit quietly. Sit in the dark. This is good for the soul.
  37. I am heartbroken he’s gone.
  38. Don’t be a misanthrope. Despite how easy it can be.
  39. There is more love out there, kindness, joy, charity, music, art, sexiness, compassion, generosity, than all the despair and the hate.
  40. For proof: make eye contact and smile at those you meet.
  41. Be generous. With your time, patience, knowledge, things.
  42. After rounds of unsuccessful antibiotics, antifungal creams, helpful steroids, a biopsy was taken.
  43. And then another, but this time larger and deeper. Bits of flesh cut out, processed, examined.
  44. It is a cancer, but not a deadly one. Or rather, it is. But the chances of dying from it are vanishingly small.
  45. But so is winning the lottery right?
  46. Even progressing through the stages is unlikely.
  47. I am scared, relieved, blasé.
  48. I have survivors guilt (if you can call it that), but I’m also annoyed that it’s not more serious.
  49. There will be no great survivor story, of how I’ve overcome the odds, lived a full life cut short. And this pisses me off!
  50. Then I feel shitty. Then all these emotions spiral and feedback. It’s complicated and tiring.
  51. Cutaneous T-cell lymphoma is a rare type of non-Hodgkin lymphoma. I have the type called Mycosis Fungoides. It is indolent.
  52. Every Monday, Wednesday, and Friday (for six weeks or so) I have light therapy.
  53. This was supposed to be a list of things I wanted to share. Some hokey advice for my kids when they’re old enough to get it.
  54. Some things that have been in my mind.
  55. I’m not sure what it is now. But here it is.
  56. When my Dad was undergoing chemotherapy my parents were given a green slip of paper by the hospital. They displayed this in their windscreen and could park for free.
  57. I now have my own green slip of paper.
  58. Light therapy takes ten minutes. It takes more time getting undressed dressed than having the treatment.
  59. Curtained off, naked except for a genital shield (also green) tied round my waist. Dark tanning-booth glasses, and a riot mask on my head.
  60. Like Borat doing CDT on a beach.
  61. Essentially, it’s a vertical tanning-booth. I’m baked for no more than twenty seconds.
  62. I can’t help but think of Bruce Banner whenever I step into the contraption. I think it would be cool to turn into the hulk.
  63. I’m ushered in and out very efficiently, very professionally. It’s all very NHS.
  64. Names are confirmed, next week’s appointments arranged, no messing, no fuss.