So the latest side-effect has been quite extreme. Agony in both feet. Couldn’t walk much for three days. Had to hobble from bed to bathroom. The info sheets I had been given said under ‘Less common side-effects’: ‘Soreness of the palms of the hands and soles of the feet (sometimes known as Palmar Plantar or hand-foot syndrome.) This is temporary and will improve when treatment is finished.’ Since treatment is finishing in four months I did feel quite disturbed that I might be hobbling for all that time. A friend has since suggested crutches, which I had never even considered. Good idea. Will have them ready for next cycle.
Looked up Palmar Plantar Syndrome of course. One website rather thrillingly advised me that doing anything such as washing up or cleaning with my hands was a no-no. (My hands are not affected but I don’t have to make that clear and Fred doesn’t read the blog so will never know. He he). Fred has been very good at bringing me things during my incapacitation. He went foraging for me at midnight last night and appeared with a bowl. ‘This is muesli, with almonds and a grape,’ he said. I know, WTF? I asked him if he had found the grape at the bottom of the parrots’ cage. ‘No, he said, ‘it was in with the almonds.’ All very strange.
No one is good at remembering I have GIVEN UP DAIRY. Keep bringing me cuppas with milk in. Duh.
So far the first chemo week has gone like this:
Days 1 and 2: high as a kite, no sleep, felt great.
Days 3 and 4: aches and pains all over body, ow ow, no sleep, got codeine. Start of Plantar thing.
Days 5 and 6: Plantar Syndrome, constant intense foot pain, only can sleep with codeine. Took Carcinosen and went to bed.
Day 7: so far (11pm), foot pain gone! only red itchy eyelids, two nosebleeds and no sense of taste.
This has been the most fabulous social whirl of a week. My dad, Karen and Claire have been to the ponies with me. Sue came for a chat with organic chocolate. Karen again dropped in with fruit from the market. Pupils brought berries, and cards and flowers. Ali dropped off a huge fish pie. Vicky turned up with a wonderful spicy dish with salad, (she does recipe testing for Sainsbury’s). Cath brought flowers and came in for green tea. Sarah brought dark chocolate, nuts and seeds and sorted out shelves with me. Debbie came for tea and cleaned out the food cupboard with me. Phoebe and Tina took me down to lunch (fresh mackerel with grilled tomatoes) at the Lemon Tree. I got back to find a huge bunch of flowers from the RDA helpers. And I am having to keep up with at least 15 games of Words with Friends. I am bowled over. It’s like having a birthday every day. At this rate I’ll feel really bad if I get better.
The major theme of the last few days has been ‘DETOX LIKE CRAZY.’ When I asked the doc about the aches she said to drink a lot to flush out the toxins. So I have been alternating the green tea with water, apple juice and the mad Flor-Essence herb drink. It says on the back ‘For hundreds of years Flor-Essence was a secret known only to the native North American Ojibwa tribe and is described as ‘the holy drink which brings the body back into balance with the great spirit.’ Its most anti-cancerous herb out of the eight is sheep sorrel, or Rumex acetosella.
I went to the homeopath yesterday with the foot thing as well as the whole thing – they tend to like the whole thing. Remedies are very good at killing pain and I don’t fancy becoming a codeine junkie unless I have to. Had a Carcinosen 200 (surprise surprise, it’s been my constitutional remedy for the past few years and it’s made of cancer), slept for thirteen hours, woke up and the foot pain had gone. The homeopath is on my case now and is preparing remedies for the next cycle of chemo, now we know what sort of thing to expect. In answer to my questions, she says we could find the bark that Docetaxel is made of and make a remedy out of it. This could help my body make sense of the drug before I have to have it again. All most fascinating.
I went for the first time to the Mary Wallace Centre, near Addenbrooke’s. The centre helps cancer patients with information, support, advice and alternative healing. They run courses of gentle Yoga, Qigong, Reflexology, How to Tie your Headscarves/Turbans etc. A friend’s dear mama, Carole, had sent a card recommending that I go there for a talk on diet. Sam, young and beautiful with two young kids, had a tumour the size of a grapefruit wrapped around her bowel. Two and a half weeks later, the operating team could barely find it. She had shrunk it by starving the cancer. From being a crisps and wine type of girl she became overnight a clean diet born-again. For breakfast she has muesli, soft berries and soya milk. For lunch she has Miso soup with garlic, turmeric, curly kale and other veg. For supper she has a pile of grain such as quinoa or brown rice with roast vegetables and a big raw salad. And she drinks four cups of properly steeped (six minutes) green tea a day.
There were 16 women in the room listening to Sam. Most were taking notes. One poor defeatist whose cancer has come back was wailing ‘How do you keep positive? I find it hard to be positive.’
Sam said ‘I just knew I had to keep trying as hard as I could. I had to do it 100 percent.’
Defeatist lady said ‘But I’m a shepherd’s pie sort of woman. My husband would be really upset if I stopped cooking him his favourite things.’
One woman agreed, railing against the tyranny of positivity. ‘Competitive cancer’ she called it, people vying in the press to be more positive about their illness than the next person. But I and most of the women there remained quiet. It’s bloody obvious why you have to remain positive: if you keep thinking you are going to die, then sure as hell you are going to die. Negative thought patterns obviously lead to lack of energy and stagnation. You can’t afford that. Surely there is always something you could be doing to help yourself. Like breathing well, for example. I don’t know, sitting up straight. Playing the flute. Going for a walk. Or dropping in at the center where they are so supportive.
Having said all this, I just felt a cold chill: am remembering how the foot pain felt, and thinking that the other drugs, the FEC ones, might make me puke, have diarrhoea and other things. Then it won’t be so easy to sit up straight or go for a walk and smile at people. I’ve already found it impossible to walk from bed to bathroom. Who am I to be so cocky and confident? See, the doubts are coming trickling in. Maybe even poor defeatist lady had her Strong Woman intact at the start.
I spoke to Carole during the week. She is a born-again anti-cancer fanatic whose perseverance and determination has led to her husband Harry still being well five years after a bad prognosis. She has studied the Anti-cancer diet, and shares all she has learnt energetically. They do no dairy, no wheat, no sugar. They check the PH of Harry’s blood and adjust his diet accordingly. They both look fantastic. When I asked her how she found the strength to do it she simply said ‘I couldn’t let my Harry die.’ I knew a different Carole thirty years ago. As a teen, I used to love going round their house because they had a drawer full of Breakaways, Kitkats, Club biscuits and Trios. The drawer is no longer! They sprout seeds instead.
My breast care nurse phoned up today from Addenbrooke’s. She said sorry for not arranging for me to get the results of the MRI scan, as she was out all week. I said that was ok, as the only thing likely to change from the result would be single mastectomy to double. And I’m already thinking (but as a positive thing) maybe go for the double. Would I want to risk going through this again in three years time? As a friend said, while showing me her fabulous reconstructed fake boobs, ‘If you have no breasts you can’t get breast cancer.’ Hope that’s true.
Then the nurse said I have to go in next week to have a marker clip put in the breast.
‘What is a marker clip?’ I asked.
She said that if I respond really well to chemo the lump might disappear and they need to know where it was so they can still take out the right bit.
‘If the lump disappears completely do I still have to have the op?’ I asked.
‘Yes, because when chemo stopped it would in all likelihood come back.’
Damn, so even if my fabby diet works and with the chemo manages to shrink the tumour down to nothing, I still have to have the boobs off!
I wasn’t trying to be difficult but I did say ‘If we already know I have to have the whole boob off, then why does it matter whereabouts in it the lump is/was?’
I am not sure what she said, something like they had to have a way of knowing where the dodgy cells were located, in case they need to go in and assess cells any time before the op.
I wonder what markers are made of. Am going to look them up. Don’t really love the idea of an alien thing in me. OK, have looked them up. Looks like the clip is metal, titanium. About 3mm. They put them in using a long needle and ultrasound. Bet it will hurt. (But in a positive way!)