today, i had one of the most positive moments in this whole rotten business. i went out to an incredible service in canberra, called HeadsUp, for women with hair loss – through cancer treatment or otherwise, but specialising in cancer patients, and bought hats.
that sounds a bit trivial when i put it like that. but the problem is, when your hair falls out and you cannot for the life of you thermoregulate anyhow, hats are actually desperately needed. i have wonderful and beautiful daytime beanies, but for around the house, and for night time, i’ve realised it’s actually vital to have little ‘sleepy hats’ or ‘around the house bamboo turban’ – as well as hats with brims because, well, cancer treatment and sun exposure are really not good friends. so i spent an hour with three inspirational women who have made their way through cancer treatment – trying on all these different hats, different little accessories to dress them up or dress them down, scarves to match, and ideas for wrapping your head with a scarf to make a turban. while i was there, the amazing woman who ran the charity (it’s a store that operates non-profit) clippered my hair off. and i felt free. not sad anymore, not worried, but free of it, and not even bothered. i cannot thank the three women with me today enough. i think a lot about healing, and the metaphors my brain unbidden comes up with, and three women – different women, different times, different images, different situations – unknown women, grandmothers, Quan Yin, my dear friends, my mentors – is a repeated one. i don’t put faith in this – i am bipolar, and my brain does exceptionally weird things on an exceptionally frequent basis – but it feels nice.
i had my fortnightly check-up with my oncologist. in great news, i now will see him monthly, and will be getting my CT scan two days before i see him next in september. it means that treatment is going pretty much on schedule. they are changing my chemotherapy mix next time, and i’m slightly nervous – but i mean, all these drugs are risky. likely to have more small nose bleeds, and a very tiny risk of some more intense complications i’m not putting in here because i don’t want to think too much about getting them. doctor is confident that the chances are not high. my liver is doing well – go liver! the Jaundice Enzyme (sorry, i intentionally try not to focus too much on medical terms so i don’t doctor google – i am by no means science literate enough, nor able to become science literate enough, to make any decent comments about the Science of what is happening) is dropping further – which is excellent. the rest are a bit up and down, which makes sense, and the tumour markers are erratic because i’ve not been getting my blood tests in a consistent pathology clinic. for some weird reason, they don’t use standardised numbers for tumour markers? eh. so i now have to be monogamous to Capital Pathology. oncologist has no idea why i lost my hair. he just shrugged, and said it’s weird. cancer is weird.
my portacath issues were also explained. the weightloss means that i am more aware of it – thinner people tend to be, and the reason it feels different is that the swelling takes some time to go down. so, it’s just less swollen. and i’m too thin. i’m fortunately not losing much, but i am hovering around the lower end of the healthy weight range, and it’s not ideal.
it’s a serious issue- and i’m really struggling. i am eating full fat everything. i am trying to eat as much as i can – i can’t tolerate the thought of meat, and the weirdness of the sulphur intolerance means food is a pain. for example, i had a delicious lunch. that had some spring onion in it – a TINY bit. now feel totally wretched. let it be known: i feel more sick from food with sulphur in it than i do from chemotherapy.
but thank you, sulphur. if i didn’t have that pain in the butt sudden inability to eat onion etc. without projectile vomiting, i’d still not know i have cancer. the seediness now reminds me to be grateful. (and i still feel sick and irritated. i am not a saint of good wishes, sadly).