101 Things I Have Learnt from Leukaemia, Lockdown and Life in 2020
A year ago, aged 33, I was diagnosed with Acute Myeloid Leukaemia. Here’s what I’ve learned from living through cancer — and doing loads of quizzes - in the times of Covid-19.
1. Leukaemia depletes the immune system, meaning that early symptoms can be hard to distinguish from feeling generally run down or having a virus.
2. Out of hours NHS lab staff work with the Ambulance Service to track you down when they receive a blood sample that makes them think you may be seriously ill without knowing it.
3. People really like to send socks and hand cream as gifts when you are unwell.
4. Chemotherapy was discovered by observing the effects of mustard gas on soldiers.
5. My leg hair is indestructible.
6. Cancer is legally recognised as a disability.
7. No matter how much time you have, it’s impossible to finish Netflix. Or twitter.
8. There are four main types of leukaemia, and different ones are more common in different age groups.
9. I have little need for physical cash in my life.
10. The worst part of being unwell is when you feel too awful to be your best/true self, to be thoughtful and to show compassion for others.
11. You can use your Nectar points to buy EBay vouchers, to spend on pre-loved books.
12. I’m not scared of being dead, but I’m scared of being in pain, and of leaving people behind.
13. I have no problem with avoiding salad in winter.
14. It’s possible to function surprisingly well when your haemoglobin levels are around 30% lower than the normal range.
15. I have an urgent need to be creative.
16. Being able to advocate for yourself in hospital, ask the right questions and speak up when something doesn’t seem right is a privilege that will affect the outcome of your care.
17. Intravenous paracetamol is surprisingly effective.
18. Galloping (my own or others’) makes me happy.
19. Being ill can make you feel broken, but it can also give you a sense of belonging, being loved and having something valuable to say.
20. Aladdin is the best one of the live action Disney remakes.
21. Anyone with a cancer diagnosis can skip right to the end of the application form for New Style ESA. No other condition qualifies in the same way.
22. A city where people cannot be near each other feels like a prison.
23. At first crying is frequent and driven by fear, but gradually it shifts and tears are reserved for moments of relief.
24. There’s no way to arrange a hospital room so that everything you might need is within reach when you are tied to a drip and too unwell to move.
25. Completely giving up is actually harder to achieve than just about managing to carry on.
26. Parmesan cheese contains unpasteurised milk.
27. It’s mind bogglingly wonderful and scary and unbelievably awe inspiringly lucky when you have a sister whose stem cells can save your life.
28. When they say they are going to tattoo you so they can line up the radiotherapy machine, they mean actual teeny tiny tattoos.
29. Kingdomino is the best board game to play on the wheelie table that fits over a Hospital bed.
30. Total Body Irradiation is painless but damages the DNA of millions of cells in the body so that they stop reproducing.
31. Hospital pyjama trousers are only made in men’s sizes.
32. It takes 4 hours to extract 20 million stem cells from a donor, and 12 minutes to infuse them in a recipient.
33. Getting fed through a tube is a right faff and pretty uncomfortable.
34. A nurse can give you drugs but they can also help you shower, shave your head and find you sunglasses when the light hurts your eyes.
35. You can do multi-screen in iMovie but it’s an annoying faff of a process.
36. Cancer treatment doesn’t feel like a fight. It feels like a dancing on a cliff edge with a partner you never wanted to meet.
37. Access to the outdoors and to other human beings are essential for good mental health.
38. There are 32 cupboard and draw handles in my mum’s kitchen. It takes 15 minutes to disinfect them all.
39. After a stem cell transplant, you have two sets of DNA and are officially a medical “Chimera”
40. Cutting a man’s hair is easier than I thought, but still scary.
41. Telephone counselling is useful but not the same as being in the room with another person.
42. To make a bed neatly without fitted sheets, you wrap the corners like a present.
43. Cancer treatment can cause you to get a different type of cancer in later life, as well as increasing your chances of organ failure, cataracts, infertility and osteoporosis.
44. The tallest waterfall in the world is taller than the tallest building in the world.
45. The UK benefits system doesn’t recognise immunocompromise as a justification for financial support with travel costs, but it does recognise anxiety about public transport use.
46. It’s hard to get out of the habit of talking about what “our children” will experience, and what things will be like “when I’m old”, even when you have good reason to wonder whether these things will actually happen.
47. Kestrels are the only birds of prey around here that hover.
48. Once you know what it feels like to not want to exist any more, your heart aches constantly for other people’s pain.
49. Zoom breakout rooms are surprisingly good for starting conversations with new people.
50. A “turbie towel” is good for keeping your head warm even if you don’t have any hair to dry.
51. Huge amounts of money, research and publicity are focused on cancer treatment and the experience of patients, which people with other diseases do not have access to.
52. I’m less interested in perfecting my own singing technique than I am in mastering complex a cappella harmonies.
53. Not being able to do anything can be a welcome relief from trying to decide what you want to do.
54. Black Lives Matter, actions matter, words matter.
55. Quality of life is just as important to me as quantity.
56. Pope John Paul I was only in post for just over a month before he died.
57. People with antibody positive blood types can receive platelets from positive or negative donors.
58. Having a family who are comfortably well off and can catch you when you fall is the greatest privilege of all.
59. Making your own croissants takes ALL DAY.
60. Sun loungers are great for stargazing on a clear night.
61. CMV is a virus that many people carry without experiencing symptoms.
62. About a year after a stem cell transplant you have to have all your childhood immunisations again, when your new immune system is strong enough.
63. Having long hair wasn’t actually making my nose look smaller.
64. I enjoy reading fiction a lot more when my head is not full of work.
65. Clinical Nurse Specialists work wonders to bridge the gap between patients and the sometimes scary or confusing world of medical treatment.
66. If choosing entirely on the basis of comfort, I only need about 10% of the clothes I own.
67. Doctors who are experts in their field don’t always agree.
68. My parents are incredibly productive and have always done at least three useful things before I’ve woken up in the morning.
69. White Admiral butterflies can glide and soar in flight.
70. Kansas City isn’t in Kansas.
71. We talk about chance as though it is an inherent property of an individual event, but it’s really just a way of describing a collection of outcomes.
72. My husband has super nice colleagues and an interesting job.
73. Steroids make you feel very energetic and hungry.
74. You can tell when a homegrown beetroot is ready because its ‘shoulders’ protrude from the ground.
75. It’s hard to function unless you allow yourself to believe that somehow everything will ultimately be ok.
76. Exercise is as much a mental challenge as a physical one.
77. We have a kind of protective amnesia that makes it hard to remember the worst times in detail.
78. Gatekeeper butterflies are small and brown with a spot on the wing.
79. It’s much easier to crowdfund for charity with a personal story of almost dying than is when your job is to try and help people achieve something beyond mere survival.
80. Eight US presidents have died in office; four of whom were assassinated.
81. We have to make choices based on inconclusive evidence when nothing better is available.
82. ‘Graft Versus Host Disease’ is what happens when donor stem cells attack the recipient’s skin and organs.
83. It’s surreal to watch the world crumbling around you while you’re too busy dealing with personal crisis to contribute anything helpful.
84. The NHS is not as geographically joined up as its named would suggest.
85. Face masks are not ‘one size fits all.’
86. Putting socks in the freezer before you wear them is one way to cool down burning skin on your feet.
87. Carers should avoid touching cytotoxic drugs in case of damage to their own immune system.
88. ‘Maintenance chemotherapy’ can continue for years after active cancer treatment.
89. Electric bicycles are fun but the heavy motor makes them impractical to ride unassisted.
90. When you’ve spent months focusing everything you have on staying alive, it’s hard to overcome the fear of this effort being wasted by one small slip-up.
91. Asking for help and allowing others to be of service can feel almost as good as helping.
92. A blackbird can tweet continuously for half an hour when its baby has been taken by a sparrowhawk.
93. I’m (probably) allergic to meropenem.
94. Sofa press ups are easier than full press ups
95. No matter what I do with my life I’ll probably always feel either a bit too busy or not quite busy enough.
96. Medical admin can quickly become so normal that you don’t bat an eyelid at having 10 different reminders in your phone relating to drugs, appointments and logistics.
97. Cars are more expensive than I thought.
98. I like my brutal honesty sprinkled with glimmers of hope.
99. ‘Life expectancy’ is an extremely slippery and badly named concept.
100. Stockpiles of socks and hand cream do come in useful when you’re not allowed to go shopping.
101. It’s OK to acknowledge the good things that come out of a crap situation, while still wishing that it never happened.
