27 – The Gruelling Club
(Original title – The Duelling Club)
Today is an anniversary of sorts. Today, one year ago, was when I discovered the weirdness on my breast and made a doctor’s appointment. Today is the anniversary of a small and insignificant event that has completely changed my life.
If someone had told me that the worst part of cancer was the fatigue back when I was diagnosed 345 days ago, I would have laughed at them. I would have said no, it has to be the chemo, the losing your hair, the sickness, the itching, the burning, the hot flushes, the chills, the fevers; anything but tiredness. But the tiredness is the worst.
I’ve been complaining about the pain in my legs and feet for months now. I’d raised it with my oncologist and she dismissed it as side effects of the Letrozole, which I accepted because at the time it was minor and annoying and it came and went, so I accepted that dismissal easily.
Well. We all know where this is about to go.
So on Thursday a fortnight ago, I stood up to go for my usual 7:30pm wee break and the pain shooting through my calves from the tips of my toes, through the soles of my feet, over the top of my feet, up my heels, all the way to my knees literally took my breath away. I stumbled the twelve steps to the bathroom and sat down on the toilet and cried – and not because of using the toilet. I had been getting used to the pain in my feet on standing, it’s just something that happens, and after a few minutes it usually eased off enough to shuffle around a bit. I had noticed that the pain was becoming more intense, lasting longer, and happening more frequently. It didn’t matter if I walked 3km, or if I rested all day. It just was.
On the advice of my breast nurse whom I messaged about this on the Friday afternoon asking for help, she recommended I head to the emergency room to get someone to look at my feet. Maybe they could scan them, maybe they could give me *some* idea about what the heck was going on, because side effects don’t usually get worse to the point of crying just because you stood up. Yvonne came with me, and we sat in the ED waiting room for three hours. I was finally called back at just after midnight, and I met a stone wall of a doctor.
The general gist of the conversation with him was, why was I there, and why was I going to make him do half an hour of research on my very specialised cancer fighting drugs when that’s not his bag, baby, and what could I possibly get him to do about my pain. He was OK in the end, after I explained to him for the third time that I was not there because I wanted to be, that on recommendation of my breast nurse who was concerned at the amount of pain that I was in I presented to the ED because my GP clinic was closed and she wanted me looked at.
I told him that the increase in morphine I had started taking a few weeks ago did not help with the pain and it persisted and increased despite my efforts with ibuprofen, voltaren, and paracetamol. He recommended I increase my morphine to 15mg from 10mg (NO) and take some paracetamol and ibuprofen as well as my breakthrough liquid morphine every 4 hours over the weekend and see how I go (NO).
The country air of my weekend in Bendigo must have done wonders for me because my pain decreased over the weekend, only to return on Monday morning while I was on my way to my first psych appointment in six months. I organised to see Palliative Care afterwards and asked that I could see the doctor I saw last time because he was on the ball and super helpful. Turns out he doesn’t work mornings on a Monday, but they asked if he would come in early to see me, and he said yes.
This man is a gem.
After describing my symptoms to him, him pinching my legs and arms, and asking me a list of questions from a questionnaire he googled, within ten minutes he was out the door checking with his boss and the oncology doctors whether or not I could have the drugs he was thinking of giving to me. He was gone long enough for me to email my travel agent, and message a couple of people an update on what was happening. He came back with a grin on his face.
Neuropathy, caused by the chemo. For some reason it’s taken five months since ceasing chemo for the symptoms to appear in enough of a pattern to make sense – I’ve had some difficulty walking for a few months now (my left leg feels heavy), and a bit of an ache in my feet that I just put down to being heavier and older and weaker and less tolerant maybe after moving about, and tight calves because I’ve always had tight calves so why is this any different to before? The pain was a thousand different things at once – sharp, pins and needles, numbness, tingling, hot, cold and dull – which makes no sense to anyone who hasn’t had neuropathy before, I’d wager (note to self, ask pall care doctor if, when he had cancer, he had neuropathy; also to mention to oncologist to be on the lookout for other patients who might have it).
I have a fairly high tolerance for pain, so the fact that I complained about it in the first place is huge. I always thought I was a massive sook when it came to pain, but it turns out I put up with more than I probably should. The reason I do this is because I don’t want to make a fuss, and that’s something that my nurse as well as a lot of you will be saying “but you should speak up, it’s important!” to. But I don’t, because I’m a woman, and we’re raised to just accept when someone tells us something, and don’t make a fuss because our opinions don’t hold weight because we have a uterus that makes us hysterical. Or something like that.
So anyway, my leg pain is now under control, I get to feel drunk all the time without destroying my fragile liver, and now I notice lower back pain that is probably either my spine collapsing further or my prolapsed disc from last year deciding it wants to join the party too.
One battle at a time, hey?