Stories of Cancer
Giving Voice to Real Experiences

Zapped

I have to come every day for the next three weeks. I easily get into a routine, driving myself there, getting early morning appointments so that I can park easily and not have too many delays. Getting to know the way to the radiotherapy suite is part of the journey, the rooms feel miles away from the outside world, through a rabbit warren of windowless corridors into a waiting room for treatment room number three. I sit and read something entertaining but mindless. Usually I don’t have to wait long before I’m called to the tiny cubicle to change. Often, I go straight into the treatment room and get undressed there. One day there’s something wrong with the machine and I have to go to another room. I realise I don’t like having my routine disturbed, somehow the rhythm has become reassuring. I get to know the staff team, the system for waiting, undressing and getting the machine lined up to my tattoos.

However routinised it gets, it is all very strange and mechanical. The warning light that comes on outside the treatment room. The staff retreating behind safety screens. The invisible impact that it has. Every day I notice I feel a bit different when I leave the hospital, a bit more tired than when I arrived. Subtle but noticeable. I’m luckier than some other people I meet there, I don’t have any burning to the skin and no other immediate side effects – except the tiredness. Could be luck or maybe it’s the aloe vera gel I’ve been using. People were right, it is a doddle compared to chemo – but – it is still weird.

Most of the impact comes later. A few weeks after finishing I hit a wall of fatigue. I can hardly move for tiredness. My limbs feel like logs when I wake up in the mornings and life becomes a real struggle. Every day I make myself get up in the morning, and consider it’s a result if I’m listening to Woman’s Hour at breakfast time. It means I’ve got up, dressed and washed by 10.00 am. It is very easy to overdo things and, although I have some days feeling a bit better, if I do overdo it, the impact can last for days.

My breast feels hot for months afterwards, and is still heavier and denser than the other one even now, years later. Karen, the physiotherapist I see at the Cancer Support Centre, explains that the fatigue is caused by the body trying to repair the damage it has suffered. Yet, apart from the heat, I can’t see or feel any damage.

One day when I’m at the hospital for treatment I meet the nurse that Dr Young referred to. Her name is Vicky and she’s a Breast Care Nurse. I didn’t know that the hospital had Breast Care Nurses. I wished I’d found her when I was having chemo. She’s great, so different from my previous experience of Breast Care Nurses. We have a few sessions together. I talk about my fears and anxieties, like my fear that life will never be the same again. She asks sensible questions, like “Why do you think life has changed forever?” Of course my life has changed hugely since I got cancer – apart from anything else, by now I’ve been off work for nine months. But her support helps me not to be so scared by the changes, and gives me the glimmering of hope that the changes might not be as disastrous as I imagine.

Once I’ve calmed down, I can think more clearly. I remind myself that I’m a lot better off than most people – low mortgage, income protection insurance, a partner and loving friends and family to support me – time to count my blessings.

I get so attached to Vicky that I burst into tears when she doesn’t turn up for one of the review meetings with Dr Young. I find out years later that he has written of me “She has marked psychological difficulties in coming to terms with the diagnosis and treatment”. I was upset by this when I read it but, looking back, writing this, he did have to cope with a lot of tears! I wonder how many others have difficulty in coming to terms with what has happened? And how many are so good at being stoical, good patients, that they take their tears home so that the doctors don’t know what sort of difficult psychological adjustments are being made? I don’t expect my oncologist to be a psychotherapist, I’m much more interested in him saving my life, but I wish he saw tears as a normal reaction to a horrible situation.

Radiotherapy is so different from chemo. With chemo you see what is going into your veins and the impact is immediate and dramatic. With radiotherapy you don’t really know what’s going on, the impact is harder to see. I keep going to the hospital, trusting that these machines will save my life, but sinister dreams betray my fear that I’m under attack:

I’m on holiday with my friend Liz and her daughter Natalie, staying in a cottage somewhere. It’s a big room with shutters on the window and two big doors. There’s a mob of faceless strangers outside throwing mud at the window and trying to get in the door. Each time they attack we manage to keep them out. But Natalie is scared and hides under the bed like a little rabbit. The people outside are marching up wide steps, waist deep in water, to get to us.

My journal at the time adds:

I feel very vulnerable, I’ve had enough of all this. Dr Young wants me to start hormone therapy before the radiotherapy has finished. I ask if it will make much difference if I leave it a month or two. He says no, given it’s a five year treatment plan, not starting yet won’t make much difference. I am tired of treatments and want a break, so we agree to leave it till December before I start. My GP can do the prescriptions.

My arm needs lots of stretching and daily exercises to keep it mobile. The machines are zapping across the base of my breast, possibly touching a bit of lung or rib, but certainly affecting the muscles or nerves under my arm. There is already a numb area from the surgery down the outside of my arm, and as the radiotherapy goes on this gets worse. Lifting my arm above my head can be difficult.

I go to a class in the rehabilitation gym at the hospital which is helpful, now I know what I should be doing to keep the area moving. I still need physio on it some months later. Full movement does come back, so long as I keep stretching it. The numb area takes years to get back to normal, eventually helped by deep tissue massage on the scarred area in the armpit.

Quite quickly the three weeks of radiotherapy are up. Treatment is over and I don’t have to go back to the hospital for three months for my first follow up check. That will be weird. I have got used to the hospital and the doctors being a part of my daily routine and I feel a bit scared. The hospital has somehow become a part of my safety net.

The week after I finish, I get a phone call from a friend to tell me that an old boyfriend, Bryn, has died of lung cancer. I’m shocked. The last time I saw him he was a bit wheezy, but he put it down to the exhaust fumes from riding his motorbike up the motorway. Terry and I go to the funeral. At least this funeral is only a short drive away. This is the third death in a year for us. It turns out Bryn had asbestosis. His son tells me his decline was very fast and very terrible. All the time I’ve been having chemo and radiotherapy he has been dying, and I didn’t know. But why would I? We weren’t close any more. It was strange being at the funeral, meeting all these people who had once been friends, now I hardly recognise them. We are all so much older, and the children who were babies twenty years ago are all grown up now.

At the funeral I talk to Patsy, who has been living in Granada and we talk about the Alhambra. I’ve always wanted to go. Talking to her whets my appetite, its time for a treat. Two months after finishing treatment, exactly a year since diagnosis, Liz and I fly off for a long weekend in Granada. I’m knackered and forget to bring the tickets for the Alhambra! Fortunately its December and we get in anyway. But just getting there is a great achievement and a lovely end to a dreadful year.

We spend time wandering round cobbled streets, eating tapas, resting and talking together and end up going to the Alhambra twice. What a place! Memories of water tumbling from the mouths of lions, of intricately carved plaster work, of azure blue lasting through the centuries come back to me as I remember this special holiday with one of my dearest friends. I decide that beauty and love are great counter balances to pain and distress.  I resolve to make time for things that give me pleasure, to actively turn towards them as part of my recovery strategy.

Writing this three years later I find these notes from the weekend, nearly as good as photos to help me reminisce:

  • Intricate carved marble and plaster work, like fine sandalwood fretwork
  • Geometric beauty, a delight for the senses, water tumbling from the mouths of lions
  • Layers of tiny caves of azure blue lasting through the centuries for the tourists with their digital cameras
  • Leather seats for weary legs, spotted early in each new room we enter
  • Sticky honey cakes in dark tea rooms smelling of rose water, scented tobacco and mint

We stand looking down at the river trickling through the mud at the bottom of the shallow ravine outside our hotel. One of the ducks is dying. Its feet are splayed out beneath its fat breast, slumped on the rocks and dirt. Will anyone rescue it? Shoot it? Put it out of its misery? We pass by on the other side, moving on, tourists on our own journey.