22 DECEMBER 2010
This extraordinary year is coming to an end and, in doing so, it is a tidy end to my cancer diagnosis, treatment and their side-effects. I am looking forward to a fresh start in 2011.
The end of treatment
While waiting for radiotherapy in September, I picked up a booklet by Macmillan about what happens after cancer treatment. It said that, instead of feeling relieved that treatment is finished, some people feel abandoned.
I didn’t expect to feel abandoned but I realised that there were aspects of going for treatment that I would miss. I resolved to make the most of the positives while I could.
I had radiotherapy at Reading Hospital. I took the train then walked to and from the hospital via the canal, which was populated by ducks, swans and birds.
In the last five days of treatment, I took the earlier train to Reading, bought a packet of brown pitta bread from Tesco on the way to the canal and fed it to the birds.
On the day that my appointment was delayed by 90 mins, I went around the various waiting rooms and took photos of the fish in the tanks.
I also took a photo of the board showing photos and names of the radiotherapy department staff so that I could name people in the thank-you letter I was going to give them on my last day.
I made six freshwater pearl necklaces for my favourite radiotherapists and the two assistant nurses who’d kept us company in the waiting rooms. I made silver and turquoise cuff-links for my oncologist and picked some earrings and bracelets for the other staff.
I was excited about seeing reactions but a little anxious about taking over the waiting room.
While waiting for my appointment, I asked to see a particular assistant nurse and opened the boxes with the pearl necklaces. I asked her and her colleague to choose a necklace each and then pass the rest out to the others on a list I gave them.
Later, various radiographers came to find me in the waiting room to thank me. I began to feel a bit overwhelmed, facing the reality that this would be the last time that I’d be getting the train to Reading, feeding birds on a canal and coming to a friendly place where people were courteous and kind to me and with whom I could talk to openly.
The tweets I sent from my phone that day never turned up but I do remember saying that I felt bereft that afternoon.
Two days later, sitting at my desk at home, I was overcome with a feeling of loneliness and a real need to meet up with a friend for tea and talk. By a couple of days later, I didn’t think about it any more.
I’d wondered whether I was going to get through radiotherapy without any side-effects except tiredness. In the end, the skin under my breast started to peel on the 15th day (of 18) of radiotherapy. It didn’t really hurt but I was given dressings which I could wear while the skin did its thing and healed and still allowed me to have showers.
In the following two weeks, that skin went dark and the top layer of larger patches started to come away. The skin on my nipple and surgery scar then went very dark and eventually flaked off. Again, no pain.
I’m still feeling tired – nowhere near as tired as before – but I expect it’s because I’m overweight (again), unfit and inactive.
My hair is growing back very slowly. It’s mostly white and looks very dramatic.
The milestones were interesting.
At first it just grew straight up, very soft. It then became long enough to lie flat.
It was eventually long enough to lie in a direction. Then my patch of dandruff returned!
Then it became long enough to get wonky from sleeping on it. And now it’s wavy.
I only realised last week that this must be what people meant when they said that, after chemotherapy, one’s hair grows back frizzy or curly.
I really like my hair – it’s almost a 1920s look – but I’d prefer it to be long enough to be sticky-uppy again.
People are quick to reassure me that my hair suits me but I think, how can it not – it is my own hair, after all! :-)
My only concern is that the slow growth is a sign that it’s going to stop growing soon. In the summer I talked to a lady also waiting for a blood test who had short white hair. I commented on it looking nice. She said she’d had chemo three years ago and her hair just stopped growing at that length.
The nursing assistant that I’d given the jewellery bundle to had been a hair dresser and she’d told me where to get whacky hair dye in Reading. I have Crazy Colour (the same brand I used in my 20s at university!) in pink and blue and will colour my hair next year. It’s a temporary colour and will wash out quickly.
Otherwise, the two hats that Becky made me have been keeping my head warm this winter. Valerie also knitted me a thick hat which I will wear. I never got around to sending one of the felted hats to Penny to bead for me. I am keeping my blue wig – it also serves the purpose of keeping my head warm but I need to be in a certain frame of mind to cope with the stares it attracts.
Breast care nurses
I made more freshwater pearl necklaces for the five Breast Care Nurses based at Windsor Hospital. They’d all helped me, with information, advice or reassurance, in person or on the phone throughout the year.
I sent them a thank-you letter and the necklaces in the first week of December. I received a lovely thank-you card from one BCN I’d only ever talked to on the phone.
These people are so good at their jobs. I’m very grateful that I could call on them whenever I needed to.
On being brave
Lying in bed recently I thought what a big deal it was that I went to parties and evening talks in London – that is, I was out and about – during chemo. It was a strange feeling but only lasted a moment.
From what I remember, I felt lousy (icky and glum) the first week after each session but fine the following two weeks (although very tired). To not go out and see people would have been daft.
The brief thought of it being an achievement made me realise what people had meant at the time when they’d said I was brave or had courage; despite having gone through the reality of chemotherapy myself, what chemotherapy represents as an idea is very powerful.
I was struck by the blogged conversation that Lisa Lynch had with one of her cancer nurses:
“So,” she said on the morning of my surgery, bounding up to my hospital bed around which my family were gathered, “it”s been so long that I haven”t even seen you to talk about your book!”
“Ah, of course ” so you’ve read it”” I asked.
“I have, and it’s really impressive.”
“Ah, thanks,” I said.
“I have to admit, though,” she said tentatively, “I found it to be quite a depressive read.” (Down the side of my eye I caught my old man preparing to put her right in the way only a Dad can.) “It’s very angry.”
“That’s a fair point,” I admitted. I couldn’t argue with that, really. I mean, while it was never exactly my intention with my book (and is, at the same time, difficult for me to judge), I expect that The C-Word can probably be as angry as it is daft.
But then came the clincher: “I hadn’t realised that you hadn’t coped.” Now that was something I could argue with.
“Whoa whoa whoa,” I protested, “I coped really well, actually. Being angry or feeling depressed doesn’t mean you’re not coping. It’s part of coping. I coped just fine, thank you.” (Dad’s I’ll-put-you-straight look now had more of a you-tell-’em-Lis air.)
“Oh okay,” she conceded. “I’m sure you did. I suppose I meant chemo. I hadn’t realised you hadn’t coped with that part.”
“But I did cope with it!” I squealed, getting redder with every syllable. “I mean, shit, it was a living hell, but I coped with it!”
“I’d just never realised how it had been for you,” she said, as I suddenly twigged that her perspective wasn’t borne out of disparagement, but of hurt at me keeping from her such an enormous part of my experience when I’d been so open about everything else. “I’d always imagined it hadn’t been as bad as you’d expected it to be. I mean, lots of women we see deal with it fine.”
As Lisa points out, people might think that the women deal with it fine because those women aren’t detailing their side-effects. I didn’t share everything either.
Chemotherapy wasn’t what I expected: it didn’t hurt, I only threw up once, I didn’t have bowel or mouth problems, my nails didn’t fall off and I didn’t have a metallic taste in my mouth.
However, after the second session, I really didn’t want any more.
Earlier in the year my cousin had told me that she’d opted for chemo after her diagnosis even though it wasn’t deemed necessary. She stopped after three. I thought she was daft. But, once my side-effects showed up after the second session, I understood why she stopped.
I didn’t have Taxotere which has more side-effects than the FEC chemo I had. Still, I felt like giving up after two because every day for a week after each session, I felt sick much of the time and I felt glum. I didn’t want to do anything and I didn’t want to see anyone. In addition, each session was accompanied by the knowing dread that the side-effects would be stronger and last longer the next time. By the last (sixth) session, the side-effects lasted 10 days.
I am glad that I blogged about it at the time so that I can remember what it was like. Many people have a much worse experience of chemo as I did but you will never catch me saying “chemo wasn’t that bad”.
For a while I thought I’d opt out of chemo if I got cancer again. But now I’m okay with the idea of it.
(And, by the way, if I do get cancer again, I can’t repeat the luxury of blissful ignorance I had this time, of not knowing a lot about what was going to happen next. In the unlikely event that there is a next time, I will be aware of the path mapped out for me and I think it will be very much harder.)
Where my head is now
I spend very little time thinking about what’s happened to me this year. My short hair should be a reminder whenever I look in the mirror but it’s now become a separate thing in my mind: my hair happens to be short and white, and I am waiting for it to grow.
I am very glad that the whole experience – from finding the lump, surgery and treatment – has been contained within a single year. I feel hopeful about the future.
I am so proud to have family and friends – including people I’ve only ever communicated with online – who have supported me this year. I have really appreciated it and am humbled by it. I hope that I can be as good a friend to you guys when you need support too.
I’m pretty sure that I don’t have cancer any more and that it won’t come back. I feel fine and – aside from tinnitus and having to lose about 45 lbs (20.5kg) again – I am fine.
I’ll try to blog about other interesting things in future!
Wishing you good health and happiness in 2011.