What is it like to have cancer?

This is a guest blog post from Reginald Hall, trustee of Cancer Connections, a cancer support charity in the northeast of England. Reginald was previously consultant urological surgeon in Newcastle and director of the Northern Cancer Network.

Hearing the doctor say: “I’m sorry, it’s not good news: it’s cancer” is almost always devastating and for those who hear it life is seldom the same again.

The task for healthcare professionals is to treat the cancer as effectively as possible – but how we do that can have a huge impact on how our patients and their families deal with the roller-coaster experience of cancer and its treatment.

Unless we have had cancer ourselves we cannot understand what that is really like. Listening to patients is essential. These brief glimpses of the reality of life with cancer are a selection from a new book that tells the stories of more than thirty people who have experienced cancer in different ways.

The stories are very personal and describe the uncertainty, anger, fear, grief, loss of control, faltering self-confidence - so many emotions and practical problems that people who have not had cancer never understand.

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You never forget the day they tell you. The surgeon was not a man to beat about the bush: ‘I’ve got to tell you you’ve got stomach cancer’. Right. Well. You go numb. Nothing. Everything. The world seemed to stop. It was surreal.

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I was in the office when the surgeon telephoned. When he said nothing but that he wanted to see me I guessed, and could not stay in the office. I went outside and bawled my eyes out. When I reached home I went for walk in the park with my wife. We sat by the pond and cuddled, and told each other we’d face it together although we really had no idea what lay ahead. Later, when we saw the surgeon and he confirmed it was cancer, it rocked me to the core. Everything rushed through my mind like a sort of madness. It was crazy and for weeks I lived in a big blur because things were happening around me, but I didn’t feel I was there. Fortunately, these feelings changed: I got the ‘Let’s beat this thing!’ mindset and things picked up.

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You do not think about anything else, at all, when you are diagnosed with cancer. Next, you get to the stage where you manage five minutes thinking about something else. Then gradually, gradually you get your life back when you don’t need to think about it, but that doesn’t happen overnight. I’ve always been a very positive sort of person and for me that took about six months - it’s a lonely time as people really don’t get it.

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The biopsy was on the Friday and I had to go for the results the following Tuesday, but I went straight into work and cleared my desk: I knew I wouldn’t be back for a while. Although I was expecting it, when the surgeon said it was cancer it was still a shock. I had a five-year-old daughter at school and my first question was ‘Am I going to die?’. Fortunately, the nurse replied: ‘Yes you are but we can’t tell you when or what of’. It was a strange thing to say and I didn’t take it in at the time, but it was reassuring and has stayed with me for the past twelve years.

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Finishing treatment was very scary. While you are being treated you are in the system, you are being checked all the time, but then suddenly you are cast adrift. People think that’s when you bring out the champagne but no, no, no, no, that’s when you have to get your head round the big picture. You are discharged from hospital, the professionals say ‘Off you go, see you in three months’ and you’re on your own. Now it’s up to you to face the paranoia that it could come back.

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When my malignant melanoma recurred, I saw three different members of the oncology team in four weeks and I asked each of them what my prognosis was: ‘How long do you think I have?’. They were very reluctant to answer, and it seemed I had to drag the information out of them. One said six to nine months, one twelve to fifteen months, and the third eighteen months to two years ‘but do not be surprised if it’s only three months’. I understand their reluctance because melanoma is very unpredictable, but I needed to know

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I will always remember because the letter from the hospital was written professional to professional, stating the facts: very harsh, and we hadn’t asked for a copy as far as I can remember. It said that Joyce had a terminal illness, that treatment would not be beneficial and they would provide just palliative care. Joyce read the letter, threw it down and burst into tears. When it’s in black and white you can’t escape the reality. That is my one regret: if I could have stopped the letter from the hospital I would.

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Finance was a massive problem, a really massive problem. Within days of being diagnosed with cancer my income fell from over £400 a week to sick pay of £87. I’ve worked all my life since leaving school and here we were asking: ‘How are we going to live?’ The PIP (Personal Independence Payment) took ten months to be assessed and sorted. If it hadn’t been for my brother who stumped up some money we wouldn’t have been able to pay the bills and put food on the table.

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Work and money, or lack of it, has been a problem ever since I was diagnosed. We had some savings and my wife has kept working but we had to tighten our belt and our savings were being used up; they weren’t going to last long. The help of an experienced welfare benefits advisor lifted a huge weight off our shoulders: she explained the PIP and helped with the form. Eventually it came through after six months but that’s a weird system. If we hadn’t had some savings I don’t know what we would have done.

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When you get cancer, some people use the word ‘journey’ to describe what happens - they call it ‘the patient journey’ but I hate that: setting off on a journey suggests that you have some choice about where you go but, with cancer, there is no choice. You are a very reluctant traveller, the hotels are awful, the food is dreadful and you’re travel sick!

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To the oncologists I would say “Try to be more open and be prepared to talk with us honestly. Then organize treatments for the patients so they are arranged and coordinated properly so we spend as little time at hospital as possible; we have lives to get on with”.

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Connecting with Cancer is available from www.melrosebooks.co.uk/buy-online/connecting-cancer UK bookshops and Amazon.