Stories of Cancer
Giving Voice to Real Experiences

A chemotherapy virgin

We stand at the reception desk, surrounded by other anxious patients and their carers. The semi circular counter of brown and blue, with uniformed receptionists behind, gives an oddly corporate image. To a newcomer it looks chaotic, patients milling around one side, a crowd of maybe twenty or thirty people, with four or five receptionists on the other side.

After a minute or two, I begin to make sense of it all. There are actually several queues – at the front of each a small notice shows which consultant the receptionist is working for. We join the queue with my consultant’s name on it. Terry is lurking behind me somewhere, trying to keep out of the way and to be supportive at the same time. The receptionists look strained and busy at the start of their day – it’s only 9.00 am.

A young dark haired woman gets to the front of one of the queues only to be told she is at the wrong reception desk and has to go back to the other entrance. She swallows her irritation and asks for a wheelchair to take her father back there. A nurse who is also in the queue trying to get something sorted out goes with her to find one.

As we wait I indulge in some people watching. One woman is wearing the most gorgeous scarf on her head, another a wonky and obvious wig. There is a man with a big red mark on his face (I wonder if it’s a radiation burn), an elderly frail couple who both look very poorly (Which is the cancer patient? How do they cope?).

Most people are trying to be cheerful and tolerant, but some are too anxious to be patient, clutching their appointment letters, complaining about the wait, sharing car parking and journey to the hospital stories. Lots of people come from miles away. I’m glad I live nearby. Most people look like old hands in a wearily familiar situation. They seem to know what they’re doing and where they’re going.

When I get to the front of the queue I hand over the letter, the receptionist finds my file, moves it to a box and gives me a plastic envelope with a form attached to its front. These envelopes are going to become very familiar, but right now it means nothing to me. I wait for the receptionist to tell me what to do. The receptionist looks back as if she’s expecting us to go away now. I manage to find my voice: – I’ve never been before, what do I do now? – Oh is it your first time? She looks uncertain, maybe it’s her first time too – first day in a new job? – and her supervisor comes over, asks me: is it your first time? – Yes, where do I go now? – This is your envelope for getting a blood test – take it to that area over there, get a number ticket from the dispenser on the wall, then when you’ve had your bloods done, go and wait in area A for a nurse to call you.

Of course once we’ve been a couple of times the process becomes all too familiar: arrive, register, get blood sample taken, wait, see oncologist (or one of his team), go to chemo suite, wait again, get filled with poison, go home … But this first time we’re both scared and bewildered.

Once the blood test’s been done, we sit waiting. We watch the ebb and flow of the overcrowded waiting area and try to do a crossword together. We’re feeling nervous and a bit fragile. This week hasn’t been an easy one as both of us have been so anxious. Last night we stayed up late with a friend, drank too much wine, aware that this probably isn’t a sensible way to prepare for chemo, but somehow unable to find another way of calming down. After very little sleep here we are, feeling seriously crappy.

The hospital we’re sitting in is a specialist cancer hospital, a huge whale of a place, full of other people with cancer and hundreds of doctors, nurses and other medics looking after them. We’re amazed by how busy it is. I hadn’t realised how many people are suffering from cancer. There are people in wheelchairs, people with no hair, emaciated people, dying people. And yet everyone is behaving normally. Being good patients. Being patient. Waiting stoically. Hoping their name will be called next.

By the time a nurse calls my name we’ve been waiting about an hour, which hasn’t helped the anxiety much. We get taken down a corridor to another smaller waiting area. After another wait there, we get called into an exam room and wait again. After a while the consultant arrives, and tries to set us at ease by telling bad jokes. We’ve met him before at the decision-making meeting and he seems surprised to see me again. Does he think I’m an anti-chemo type who would try and cure cancer with green tea? Or an intelligent woman who has weighed up the risks and side effects against the benefits and decided not to do it? Truth is I’m terrified of this disease and I’ve gone with his advice. He’d said he would advise his wife to do it in the same circumstances and that was a very powerful argument

 The discussion we have is helpful and the oncologist is good, patient and supportive. He’s willing to answer all our questions, and spends the time with us that we need. I know how many people are waiting, though, and I can feel the pressure he’s under, so I don’t want to take too much of his time. I try to balance this with getting my needs met and checking with Terry and the oncologist that I’m clear and ready to go ahead.

Once we’ve talked it all through we’re on our way to the chemo suite with a nurse who carries my file and shows us the way. By the time we get to the chemo suite we’ve been in the hospital around two hours. At least this receptionist knows it’s my first time, and says ‘oh yes and you’re booked in for the cold cap aren’t you?’ I wasn’t expecting that. After lots of thinking and talking about it I’d decided not to bother, because then I could come for treatment on a Friday, yet here we are being told one has been booked for me after all. Oh well may as well give it a go. We wait again, trying to distract ourselves with the crossword, still barely filled in after all this time, and then we’re called to one of the chemo rooms.

There’s a big leather recliner chair for me to sit in, and the chemo nurse is kind, sitting and talking with us for a while before treatment, asking lots of questions, making sure we’ve had all our questions answered. I feel huge gratitude for his kindness and skilled attention, and at the same time I am so ready now to just get on with it. The treatment itself is horrible, several large syringes being put into my veins one after the other. The cold cap is awful too. It’s like a large riding hat filled with ice. Gives me an instant headache. Terry watches me suffering, and tries to hide his own dismay as he sees me turn paler and paler as the injections take effect. He holds my other hand, reads me poetry on demand, chats to the nurses, makes himself as useful as he can, and goes to the pharmacy to pick up the anti-nausea drugs.

Both of us try to stay calm and practical, to get on with what needs to be done. Fears and anxieties are put on hold to make it possible to continue. When we eventually leave we’ve been at the hospital for over four hours. I go straight to bed when we get home, exhausted and nauseous. The next few hours, and days, aren’t easy. After several cycles the side effects become familiar and more manageable but this first time is tough. My nose and eyes are running constantly, my legs are jelly, hot flushes accompany waves of dizziness and being very sick feels only a breath away. Strangely, it seems to get worse as time goes on. Later I learn this is “delayed emesis”.

The chemo is administered with intravenous steroids and anti-nausea drugs which begin to wear off over the weekend. This first time I didn’t know that I could take many more of the pills I’ve been given. I’ve been told three a day so I try to stick to just taking one every eight hours, but this means I’m feeling very sick most of the time. As I become a more experienced chemo patient I find out I can take more and then I can more easily keep the nausea under control.

Terry is fantastic. Whilst I hide in the bedroom with a bucket by the bed and the telly tuned to any old crap, he goes shopping, does cleaning and washing, tries to tempt me with small bits of easy food and is a lovely and loving person to have around. As well as being caring he talks all the time, about who he’s met at the shops, about his fears and anxieties, about his knee which he damaged jogging, about what the cat’s been up to. I find it hard to listen sometimes and just want to be left alone. I’m short tempered with him and tell him to go away but then I’m scared when he does give me some space – I can’t imagine what it would be like to have to go through this alone.

I decide that after each treatment I’ll write an email to a group of friends and family. Lots of people are thinking of me and I want to keep in touch without having to make endless phone calls. It turns out to be fantastic therapy. Not only am I writing about what’s happening, getting it out of my system, but I also get many, many supportive and loving emails back. I write about how rotten I feel, about how much I hate the steroids that keep me awake but are a crucial part of keeping the sickness at bay. I send them my dreams of fire and war and philosophise about whether battleground metaphors are useful ways of thinking about cancer. However much I don’t like the words of war, my body is a battleground at the moment, with (possible) cancer cells, healthy cells, my immunity and the chemo all fighting away, and I’m learning to see it as all part of healing.

I’d always seen healing as something gentle and loving, which of course it usually is, but I guess it takes many forms. My friends write back affirming emails, telling me not to worry about whether I’m fighting or not, whatever gets you through, that its okay not to be brave, they send prayers and poetry, love and support. I am so glad that email exists, it’s such an easy way of talking to lots of people at once and I’m enormously grateful for every reply that drops into my inbox.