Stories of Cancer
Giving Voice to Real Experiences

Treatments three and four

 Treatments three and four – rock bottom

As the treatments go on they become routine, with life being organised around a three weekly cycle. I stay in bed for most of the first week after treatment, start going for gentle walks in the second week and then by the third week I’m usually up for more normal activities.

I keep a diary, and look for easy hobbies to get me through. I read lots of books, mostly easy to read fiction but I also search for stories of women with breast cancer. Most of the books I find don’t really satisfy my yearning to know what this is really like for other people. I have a strong need to make sense of the experience and to normalise it by being with others in the same situation.

I go to a cancer support centre and get some complementary treatments, reiki and reflexology, as well as a nurse to talk to. I make a friend or two there but I’m also frustrated that the group discussions there are unfocussed and missing the point for me. People use the time to complain and whinge, mostly about the treatment they are getting from their doctors. Whilst I sympathise, and I’ve got plenty of complaints of my own, I wish the group was better facilitated, that it encouraged real sharing of real fears, that someone would say “of course you’re scared and angry, its normal in this situation”. Once I realise that the group isn’t going to do this, I stay away from this session, going home early, or sit in the conservatory with one of my new friends.

I sign up for a course at the Buddhist centre on mindfulness based stress reduction and pain management and it’s great. I also set up a meditation group with friends. Both the course and the group give me something of real value – some peace and a reconnection with myself – though there are no other people with cancer in either group.

I find that after each treatment I feel really out of touch with my body. One day, about five days after my third treatment, I sit in the bath sobbing, my tears flowing into the water, looking down at my body and not knowing it – this body that I’ve spent my life with has become alien, full of sensations that are wrong and unfamiliar. My breast is misshapen after surgery, my hair is going despite the bloody cold cap, I’m having horrendous hot flushes and I feel ill nearly all the time. I let the tears come until the bath water is cold. I know I’m crying for all the losses and for the horror of having cancer, but somehow I don’t really want to explore that too much yet. I confide in my email buddy, who says that this often happened to her on the fifth day after treatment. It’s when the effects of the steroids wear off. [How come this wasn’t mentioned to me by the medical team?] So, for now, I put it down to that. More and more I cope with the horror of what I’m going through by shutting down the connection between my mind and my body. I somehow ‘leave home’, become stoical and try to ignore the messages my body is sending. My body wants me to stop this poisoning. After a lifetime of trying to listen to my body this is an alien way for me to be. Meditation helps me to gently re-connect with myself, my body, and the mindfulness course helps me to move towards the discomfort and pain with compassion, rather than trying to avoid or deny it.

Around this time life gets very hard. Terry is ill. He has lumps in his testicles. He goes for scans and consultations and eventually gets reassurance that it’s caused by cysts and infection (and not by cancer, the real fear for us). He is taking large doses of painkillers and antibiotics, and his desire to be strong and supportive to me becomes increasingly difficult for him. He has been ill on and off for a lot of our relationship and we both know that emotional distress often has a direct impact on him physically. Whatever psychological dynamics are at play, it feels irrelevant as we both just have to find ways of surviving the situation. We learn to look after ourselves and live parallel lives each in our own island of illness.

It’s been a tough year for Terry. Around five years ago we split up and he went to live across town. After being apart a few years we slowly began to get close again and he moved back in around six months before I was diagnosed. His mother died around the time that he was moving in so there was already grief in his life. He’d just lost his mother and now his, our, relationship is under threat from my cancer too. He doesn’t recover easily from the illness and is on antibiotics for months. He is too ill to continue working and now both of us are in the house together, neither of us working, struggling with our own pain and with each other.

By the time I get to Chemo number four I’ve had enough of the treatment. At the consultation before the treatment I have a longer discussion than usual with the oncologist. Do I really need eight treatments? A friend of a friend is only having six. I think maybe I can do six but eight just feels impossible. We quiz the doctor, who answers all our questions honestly as usual, and again we decide that we have to trust his judgement.

We ask about the delayed emesis [sickness – see how quickly I’ve got used to these clinical terms?] and check whether all the side effects are being managed as well as they can be. We discover that no-one really knows why some people feel sick for many days after the chemo treatment given that the medics believe that these drugs leave the body within 48 hours. There is a hint that effects beyond that may be partly psychological. Yet clearly the physical effects do last longer than 48 hours, for instance the hair loss doesn’t start till around ten days after treatment.

We find out more about the tumour I had removed – highly aggressive on all the indicators. The doctor clearly believes he has recommended the right course and hard though it is, I come out of the consulting room resigned to the fact I have another four chemo sessions to go after this one.

Whilst we’re waiting for the blood test results to come through, a small thin woman wearing a baseball cap, obviously poorly and having treatment, recognises Terry. He doesn’t recognise her. When she tells him ‘its Madeleine’ I see the shock in his face. It’s someone he used to work with over fifteen years ago. They chat for a while. Afterwards as we walk down to the chemo unit, he tells me what a vivacious woman Madeleine used to be. He remembers her big breasts, her energy and her health. The woman he’s just met isn’t the same woman he used to know. His fears that this is what’s going to happen to me resurface and he just manages to keep hold of himself as we arrive at the chemotherapy suite.

When they put on the cold cap this time I just can’t bear it. The cold is terrible, the cap is too tight and it gives me an instant excruciating headache. My hair is thinner now so there is less insulation between me and the ice. I burst into tears. Terry helps me to take the damn thing off. We’re both crying when the nurse comes back. She agrees with us that there is no point in carrying on – the pain is outweighing any benefit.  It doesn’t appear to be working anyway as my hair is thinning in spite of using it for the last three times.  It’s enough to have to cope with the chemo, without the added extra of having a freezing head. One less thing to deal with and a step towards taking control of something makes both of us feel temporarily better.

I feel very low when I get home, crying for my lost hair, raging against a book I’ve read which said ‘most women tolerate hair loss easily’, remembering the breast care nurse saying ‘some women sail through chemo’, hearing about other women who carry on working, feeling like I’m not measuring up to some standard set by the world that says how people should handle cancer. Have chemotherapy, get back on the bike, win the Tour de France, not helpful messages when all you can do is persuade yourself to get dressed in the morning.  I don’t really feel able to talk much with Terry about how he’s feeling about his meeting with Madeleine.

A week later I go to the wig shop at the hospital with my dear friend Liz, thinking it might cheer me up, it might even be fun to choose a wig. I’ve spotted one in the window that looks pretty groovy, a kind of bandana with plaits. However very quickly and quite dismissively the woman in the shop tells me that my head is too large for that one and indeed is too big for all the wigs in the shop! I’m devastated to be turned away without one. I sit in the conservatory at the hospital with Liz and cry again. Another sign that I’m not normal. I don’t even fit into the normal size of women’s heads. Liz holds my hand, lets me cry and reassures me that we can go somewhere else and find a wig that fits. Later that week I complain to the management of the wig shop and to the hospital, not only about the limited range of wigs but also about how the woman in the shop handled the situation. They give me a voucher to spend at another wig shop.

This is probably my lowest time. My journal describes my depression:

Some of the books I’ve read describe losing hair as no big deal but for me it is a huge deal. I feel really upset by the ‘no wigs for big heads’ incident, rejected, as if I’m abnormal in some way, that the system couldn’t handle me. I guess it [baldness] is a very visible and tangible sign of my condition. I certainly can’t pretend I don’t have cancer now.

I’m getting used to it though. Yesterday I went out without my hat on. Several people just stared at me. With one of them I got quite ballsy, staring back, ready to ask ‘what are you looking at?’ feeling furious and up for a fight.

Today I was down the river walking and a gang of young people wearing black with body piercings came towards me. One of the young women smiled at me, recognising a kindred spirit perhaps, maybe seeing my hair as a similarity or maybe her mum has cancer?

I’m worried about Terry – he’s really poorly, not been to work for a couple of months now and he gets so stressed by his hospital appointments and waiting for his test results.

I’m half way through but I’ve still got another four to go and the end seems a long way off. Although I’ve got used to the three weekly cycles, it feels wrong.

The chemotherapy has given me an early menopause and I’m surprised to realise that I miss my menstrual cycle, I’m used to a twenty-eight day cycle determining my hormonal rhythms, not a twenty-one day cycle. One sleepless moonlit night I try to write a poem about howling for my lost oestrogen, about wanting to be a moon woman again, and resenting these drugs that have made me bald and sick.