Stories of Cancer
Giving Voice to Real Experiences

Cold caps – what the………?

Subject: news from today’s meeting
Date: 25 January 2005
………… and I need to decide on whether I want to bother with this system of cold caps which may stop some of the hair loss but means sitting with ice on your head all day. If anyone knows anyone who’s tried it do let me know, at the moment I’m favouring baldness, just so that I can relate better to Terry. Could maybe look quite cool (will certainly feel cool when the north wind blows), a sort of punky / buddhist monk look……

Again, lots of good advice and support from friends – “spend money on a good wig (the chance to try out the sort of hair style you’ve always wanted), and on nice scarves” and reassurance that “the bald look will look cool on you” one friend even reckons it could be quite sexy. Another friend reminds me that I’m too comfort loving aka pathetic to cope with a bag of ice on my head. Losing my hair is a big deal for me, I’ve always spent money on good haircuts rather than good clothes, when I could afford the choice!

I spend more time trying to decide whether or not I want the cold cap than I do deciding on whether to have chemo. Strange what can obsess us at times like this. I do some checking out of the type of chemo he’s recommending. Having reassured myself that it is the gold standard for my type of cancer, I let go of that decision and turn my attention to the cold cap. Apparently the cold cap is only available on Tuesdays, and I can chose whether to go then or on a Friday for treatment.  This is important to me as I want to know Terry will be able to look after me should I need it. I decide to go on Fridays then he can be around for me at the weekends. This means I can’t have the cold cap, but I didn’t much like the sound of that anyway.  I write to Lois, one of the many who replied and who has supported her cousin through a very similar journey: –

Hi Lois
….. Rollercoaster is about right, woke this morning after a nightmare about treatment, feeling full of despair, which quickly became anxiety, then with support from Terry, started to feel okay again. Also saw the homeopath and now I’m just knackered! Fatigue has become quite a problem for me. I don’t know if I’m still recovering from surgery or if it’s all the anxiety. Probably both and I should be doing more exercise but I can’t be bothered!
Think you / your cousin are absolutely right, in the end you have to trust the experts. I’ve done a lot of reading and researching on the internet and you just find the same information (unless its about complementary stuff: ‘don’t take vitC during chemo’ to ‘take 10g VitC a day during chemo’…) and all that is tiring too so in the end I have to let go and trust that they know what they’re doing and I’ll stick with what I know about mind and body, spirit and purpose, love and support, hoping that will take me a long way in this journey.
So am going to start chemo next friday, without the cold cap, the idea of it kept making me shiver! and then it will be every three weeks. ……

Then I write again to my friends and family list, where I tried to be a bit more upbeat, wanting to protect family in particular. When I look back at my journal I’m struck by the difference between the public and private. My private notes are about how much pain I’m still in from surgery, feeling unready for more treatment. My dreams are filled with anxieties: about getting frustrated by having to go and find new shoes to wear; about open wounds in my side; about not being able to drive my car into the shrinking parking space. I also dream about a tsunami (this is about a month after the real one that killed so many people across the world). In the dream I see people being tossed about in the sea, the faces of dead bodies looking in the window and I’m trying to stop the children seeing this horror. It’s not that I’m not honest about how I’m feeling in my “public” emails, more that I’m practical and trying to be brave, to protect others from my pain, to show how well I’m handling this. I can even crack the odd joke.

Hi all
Just a quick note to apologise to any of you who have left messages / sent emails that I haven’t got back to. Life seems very busy at the moment, probably ‘cos I’m saying to myself “I’d better get it done before chemo starts” but now realising that there will be life beyond the first treatment!! It’s all coming far too quickly for my liking, still tired and sore from surgery but guess that’s the way it needs to be….
I was away last weekend with my sister and we had a fabulous time in the Lakes with blue skies and warm sun. This weekend I’m going to my parents so its good to be catching up with family who didn’t see much of me over Christmas. Hope the weather’s as good this weekend as it was last, that sunshine was so lovely.
I decided against the cold cap in the end and I’m starting chemo on Friday, a week today, rather than Tuesday, so I have another few days to tackle that list I was talking about. I’ve just been to have my hair cut (one thing crossed off the list, thought it might help in the transition to baldness) and its very short again, looks great. My hairdresser, Kevin, was telling me that another client of his tried the cold cap but hated it and gave up in the end, so that felt like I’d made the right decision. Kevin also told the receptionist not to charge me so I had a nice surprise when I came to pay, what a sweetheart. After I’d gone back to give him a kiss, I went straight across the road to Next and spent double the savings I’d made! Probably a displacement activity to stop me bursting into tears.
Feeling quite anxious and depressed about what is to come, which is probably why I’m busying myself so much. I veer from feeling optimistic, hoping I’ll be one of those women who ‘sail through’ to being terrified that I’ll be sick and knackered for the next six months. It was hard seeing all my long hair on the floor this afternoon, even as I was cracking jokes with Kevin about selling it / keeping it to have a wig made, I’m not looking forward to being bald, or being half bald and patchy / wispy, nor to losing my eyebrows. It’s all going to be very weird and its good to know all of you supportive people are there for me. The living room is filled with flowers at the moment – how wonderful.
I will talk to some of you this week but may not get to everyone so please don’t take it personally, I love you all and each and every message, phone call, bunch of flowers is hugely appreciated.

I decide some nurturing treatment is in order to help me get into good shape for the chemo. I’ve always loved having massage, and until recently was having a massage regularly. I’ve been a long time user of complementary therapies, and though I knew that now I was going to be getting some heavy end “white man’s medicine”, I was hoping to find some gentler therapies that could support me, body and mind, through the challenges to come. I go to see a herbalist who gives me some lovely calming remedies that lower my anxiety and help me to sleep. My homeopath gives me remedies to help with the cancer and with the treatment, to protect me and to help me to de-tox when needed. I still don’t know if I believe in homeopathy but I love my homeopath and I like taking a little white tablet called lotus that will protect my soul and hold me safely in the experience.

My massage therapist doesn’t want to see me. Her training has taught her that massage is contra-indicated for people with cancer. I’m devastated, and shocked. Just at the time I need it most its not there. I phone around to find other massage therapists, and end up with a list of people who are willing to work with me, but by then its nearly chemo time. After seeing this massage therapist for nearly ten years I’m so hurt I never go back.

My friend Margaret sends me an email reminding me of the Labi Siffri song – “something inside so strong …. You know that you can make it…. “ and I sing it to myself when I remember to, when I’m not too busy being terrified about what’s to come. I still don’t quite believe that this is happening to me, though my breast is still sore and I’ve clearly had surgery for cancer, I am getting good at blocking it out. I alternate between denial and terror. The only good thing about the pace of treatment is that there’s no time to worry about whether I’m going to die or not, for now I just have to survive the treatment. Jane was right about one thing, she said I would probably put off opening the “cancer box” until after treatment. It’s only now, as I write this, that I am opening the box… but that’s another chapter in the story.