There comes a time, a day, a morning when you wake up and you feel well. You might have been recovering from flu, or covid, or something else, body or soul. For me it has been edema, and today was the day.
I woke up this morning and the sky was blue, the air felt clean and fresh, and my mind for the first time in days felt clear. In that moment I realised just what a tough few days I’d been through and now they were behind me.
Of all the side-effects of chemo, edema, or water retention, has been the hardest for me by a long shot. Being sick until you can be sick no more and then being sick again, and sick, and sick was exhausting and horrible but only for one day. Losing my finger and toe nails was emotionally deeply distressing, practically difficult, and painful, but I dealt with it. Fungal infections, fatigue, hot flushes, neutropenia, peripheral neuropathy? Fuck you, cancer, that the best you got?
As it turns out, no, it wasn’t. Edema was King.
Not everyone in my situation will get edema and there are many other reasons to have it too. What made it so tough? The loss of mobility.
You’d think putting on a bit of weight, always a risk with chemo, would not have such a profound effect, and it’s not fat, just water. With my type of edema it first accumulates in your lower legs and feet. The swelling becomes obvious, and if you press your finger against your skin, the dimple stays for minutes.
All that water pressing against your muscles means they have to work harder, and your legs weigh more. And as it spreads up through your body, breathing gets harder.
The solution (hah) was to take diuretics. For me, Furosemide, 20mg a day. A low dose and it helped a bit, but then my body did what bodies do, it accustomised to the drug and my weight went up again.
Walking was getting harder and harder, I was making myself do it, but every step needed concentration and effort, shallow gradients were a severe challenge. I couldn’t exercise, I had no spare breath. That country mile stroll into town would leave me exhausted. Even bending down low enough to dress was becoming hard. I was really worried I was on the edge of completely losing mobility. I didn’t see how I could do this, how I could continue with another two cycles of chemo.
We agreed to raise the dose to 40mg and it began to help, but all drugs have side effects and this one was a corker.
When you’re on diuretics you need to drink a lot. It feels counter-intuitive, but as you lose fluid your blood volume drops, and when your blood volume drops so does blood pressure. When it gets too low, and 81/49 was a low point for me, you feel nauseous, weak, and dizzy. Cold sweats drench you. If you stand up, you will pass out. All I could do was keep my head down and wait it out. Caffeine, salt, small meals all help, but not in the moment. Thirty minutes later I started to feel better.
The thing is, I was pissing like a cart horse. The drugs were working, but I was utterly exhausted.
The doctors suggested changing to 2 x 20mg doses instead of 1 x 40mg. I was worried that my body would not respond to the 20mg doses as before, but this was twice a day and it turned out to be a sweet spot. Blood pressure is lower, but not too low (112/72 today). My normal is around 130/70 and anything 100+ lets me function.
I was also drinking even more water, and a sachet of Dioralyte, a salts and rehydration powder, every day. Reader, I lost 17lb / 8Kg in six days.
I have ankles again, shins. I can walk without thinking about every step. I can breathe. Nevertheless, I’ve lost a huge amount of fitness. Short walks no longer take a step by step effort, but they are tiring. I have a lot of work to do to recover stamina and strength and I need to do this carefully.
It’s hard to overemphasise how good it feels to walk without thinking about every step.
Edema is something I never thought about until I had it, I never thought it was a big deal and how wrong I was. Being ill is shite, but its sobering and going through this has changed my attitude towards all those old men and women suffering with swollen legs.
Hospital is sobering too. I see the woman in her wheelchair, pale as a ghost and thinner than I thought it possible to be. But her eyes were bright and she looked at me and all I could do was bear witness.
Later, I got talking to a man in his late thirties and asked him how it was going. He told me about his son, fourteen months old with leukaemia and I didn’t know what to say.
People are so strong.
I’m going for a walk.
Oh, yeah. Fuck cancer.