I'm on my last cycle of chemo. Yay! Cheers from the support gallery, over 27 likes to my last blog link on Facebook when I said I was going to beat this thing.
It's great to have the support and encouragement of family and friends, I'm touched that people are still with me after what has seemed like a boring and dispiriting marathon, which started just over six months ago when my husband rang to say the surgeon had been trying to contact me because there was a lump on my ultrasound.
I'm feeling like my life has been turned upside down by the events of this year. The contents of my life are lying all over the floor, the garbage bag that held them is empty, and I need to think carefully about what I want to put back in. There's so much I used to carry around in my life, but not everything was of equal importance. Being completely depleted of energy helps me to prioritize the things that I want to carry forward with me, and they're people, not possessions. My wonderful children, my family, my friends, the people who I love and with whom I want to grow old disgracefully. Nothing much else matters. I want to improve the health and nutrition of my little family so we can all be healthy together, and I want to get rid of the clutter of too many things from our lives. Living in Tasmania helps to curb the temptation to shop as a recreational activity, but we still have too much stuff left from our too big house in Melbourne.
I mustn't get ahead of myself though.
Despite my best efforts and intentions, I'm back in hospital with febrile neutropenia, getting IV antibiotics.
I thought I'd try something different after the previous cycle of chemo, when I went out with friends on the Saturday, spent saturday night in emergency after getting a fever, went home on sunday, developed rigours, and went back to emergency where they discovered my white cells had fallen rapidly in 24hours, so I was in for three more nights. This time, I thought, I'll rest on the Saturday after chemo and support my immune system. I spent the day in bed, sleeping. My temperature still went up.
Ok, I thought, I'll not get angry about being admitted. I'll rest and try to get better. My CRP (a measure of infection) was ok, as it had been the time before, but I felt absolutely lousy. It didn't help that a locum consultant had a jocular manner that made me feel trivialized, he hadn't written my drug chart 5 hours after I got there, I had to ask a nurse to get him to write me up for some pain relief. I felt unwell and anxious when my consultant came to see me at lunch time on Sunday, and I wasn't keen to go home, because I was feeling worse than I had on the previous round, and because my neutrophils dropped dramatically on the Sunday the last time. He agreed to let me stay in emergency (there weren't any beds on the ward), and I slept all day in the plaster room, a small, cold room with a door, away from most of the hubbub of the emergency department. I felt a lot better this morning, but my neutrophils had dropped to 0.1 again. I wanted to go home, and was given strict instructions to return if my temperature rose again. Ben embarrassed me by telling the registrar, resident, and medical student that I had a slight bedsore in my natal cleft (too much time lying on plastic mattresses), and that I'd been constipated, but they didn't offer to examine me (not that I wanted them to, I just wanted to go home, have a bath, and deal with my discomfort myself).
I had a lovely hot bath at home, lunch with Ben, and a sleep in my blissfully comfortable bed. Then I took my temperature: 38.1. Back to hospital, though this time I came straight to the oncology ward, the next door neighbor looked after the boys. Yet again Ben insisted on talking about my painful bottom, and this time I didn't mind, as I realised it had stopped me sleeping the night before, and was causing me considerable pain and fear of going to the toilet (imagine a pain ten times worse than that caused by the hottest curry you've ever eaten, that doesn't go away).
After consulting Dr Google, I now know a lot more about bottom pain. Piles or hemorrhoids are common, and normal, unless they get inflamed or thrombosed, where a blot clot forms - This needs attention. Anal fissures are also common, and can be chronic or acute - they are a little tear in the muscle. They can be caused by trauma, such as passing a large hard stool. They can heal by themselves, but can also go into spasm, which restricts the blood supply and makes healing more difficult. There are various treatments available to help. People who have them are often fearful of going to the toilet, something I've been experiencing throughout chemo whenever I've become constipated. The problem with having one while neutropenic is that it can be a source of infection. So I'm on a trifecta of broad-spectrum antibiotics, lactulose, and have been given some lignocaine gel to use as a muscle relaxant.
I'm still afraid of going to the loo, but glad I fessed up to the pain. It made it very hard to sleep last night, and the colorectal surgeon who came to see me tonight treated it so matter-of-factly that I'm now embarrassed about being embarrassed about it. Though I can still relate to the story of the bush walker who died after a snake bit her bottom, because she was too ashamed to tell her companions.
One thing we all need to get better at is not being embarrassed by our bodies, to ask questions, to seek help, and not worry what the doctor will think of us. If we don't ask or tell about troublesome things, we might end up much worse than embarrassed. Sometimes, not asking the right questions about our bodies can be mortifying. Literally.
