cancer

Caring for someone with cancer



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When someone has cancer, most of the attention of medical staff, family and their friends focuses on them. Everyone is concerned with how they are feeling, how they are coping, what is happening in terms of treatment and so on. Carers may feel ignored and lacking in support.

What it feels like
How you are affected by the experience of caring for someone with cancer depends to a large extent on the roles you have had in your relationship and how these are changed by someone very close having cancer.

The extra demands placed on you can prove very stressful. For example, if your partner has cancer, you may find that as well as holding down your job, you increasingly have to take on much of their role, as well as caring for them and dealing with your own feelings concerning their illness.

You may feel as if you are being split in two, having to spend more time at home, perhaps taking on more of the day-to-day care of young children as well as trying to keep your employer happy.

It is common to experience a bewildering range of feelings towards the person who has the disease. These can include shock, refusing to believe what has happened, fear, worry, anger, deep sadness and regret.

The feelings you experience may seem overwhelming and sometimes deeply conflicting. This is normal, but men may be unprepared, and worry that their feelings are a sign that they cannot cope and are ‘going to pieces’.

Some men also feel guilty about things that have happened in their relationship in the past. They may think they are being punished for being unfair to their partner, or feel they are not doing enough for their partner or are in some way responsible for the illness.

When it’s hard to talk
Men often feel more confident and comfortable taking on the practical responsibilities of caring for a partner than dealing with the emotional burden placed on them by their situation.

Talking about ‘negative’ emotions they may be feeling, such as anger and deep sadness, may make them feel they will be unable to cope or that they are letting their partner down, because their job is to be ‘strong’ for that person. So they may cope best by giving their partner the appearance that everything is under control and that they are self-reliant.

Part of me wanted to put my feelings to the back of my mind and hope they would go away. The other part wanted to talk about them.

Having all these bewildering and conflicting feelings is normal. It is important to try to accept them as such. Couples sometimes find it a relief to admit to their worst feelings. The booklet Close relationships and cancer may be useful, and is available from Cancerlink. It can be useful to talk to and be supported by someone other than your partner, especially when it seems too difficult or painful to talk to the person you are caring for. Some people prefer to talk anonymously over the telephone to a cancer helpline. This is a good way to find out more about the cancer and treatment and other related matters, which could not only benefit your partner but also give you some much-needed reassurance. It might also be helpful to contact a support group in your area.

When my partner was ill, I found it difficult to see him so dependent on me. As time went on, though, I started enjoying it and our relationship felt much closer. For the first time I really felt we were a couple.

Changing relationships

The demands put on someone caring for a very sick person with cancer can wear them down because they seem unrelenting.

There were times when I felt on the edge. I pulled back and was then dragged there again. It was stressful and made dealing with my partner’s feelings very difficult.

Yet over time, the close contact can lead to a more intimate and very rewarding relationship. Previous resentments felt by a carer may fade away.

When you nurse somebody in that kind of way your relationship with them changes. There were some very tender moments and she was able to accept my caring and loving in a way she hadn’t before. She said she could love me ‘to the edges’. Nobody had ever said that to me before.

Not everyone finds that the experience brings them closer. Some couples find it drives them apart. If you find yourself in this situation it can be helpful to seek the support of professionals such as counsellors from organisations such as Relate, who can talk you both through the difficulties.

Carers who work

For carers who have to work, having an understanding employer and work colleagues can make an enormous difference and reduce the pressure, which in turn helps them work better.

When I told them at work that my partner had cancer, everyone was brilliant and they’ve been brilliant all the way through. It helped me work more efficiently, although I had to take quite a lot of time off.

Generally speaking, there is less of a chance of misunderstanding and resentment surfacing if employers are warned in good time that an employee may need time off to care for someone close. Some companies readily give this as ‘compassionate leave’, but not all are sympathetic. This is why you need to assess your situation carefully before deciding whether it would be advisable for you to tell your employer in advance.

Men and cancer
Men may feel angry because the role of carer has been thrust on them, or because they are left to deal with all the practicalities of life such as looking after children, earning money, paying bills, shopping and so on. At the same time, these feelings of anger may cause pangs of guilt and shame.

Some men can be surprised how well they cope with nursing someone who has cancer. On the other hand, some find it very difficult, they simply cannot adapt to this nursing role. If you are having problems in this area, disccuss it openly with your GP or specialist nurse. They can always help you with simple practical issues or ways which you can get others to help you.

Employment: If your employer is less accommodating it may help to get a doctor to write to them and explain your dilemma or, where appropriate, a trade union representative. Time off may not be paid, and because this can have a considerable impact on your finances, find out if there are any benefits you or your partner are entitled to, by contacting your local DSS branch (Department of Social Security) or Citizens Advice Bureau. You may also find the Cancerlink booklet Cancer and employment useful.
Becoming a different sort of parent: Men whose partners have usually been more involved in the day-to-day care of children may find they are unsure how to take this role over, if their partner needs to go into hospital, for example. Nevertheless, it often brings them much closer to their children.

In fact, I realised I didn’t have as good a relationship with the children as I thought I did. Taking over full responsibility for them was a real eye-opener for the children and for me. With time, we became more tolerant of one another and are very close now.

Looking after the children was very interesting. It made me realise how little of a father I had been. I’d changed nappies when they were babies and that kind of stuff, but I hadn’t really taken responsibility for them.

It surprised me how quickly the children and I became an almost self-contained unit, every time my wife went into hospital. When she came out, it would be quite difficult for the first two or three days to get used to having another person around again.

Getting support

Most people affected by cancer feel the need for some support, whether from friends or outside agencies. Chatting with someone from a cancer support group who has been through similar experiences can provide a much-needed quick-release valve that can prevent everything getting on top of you.

I wanted to be left alone and I wanted people. It was either too much help or too little.

But sometimes carers feel confused about seeking help. They want to care for their loved one exclusively but get exhausted by the amount of responsibility they have.

Not knowing exactly what you want is understandable, if your attention is focused on someone close to you and not on yourself. It is difficult to get the support right, because the amount you need depends on how emotionally and physically strong you feel and how well you think you are coping at any particular moment.

Finding the right people to support you may not be easy. We may feel our families should be the ones to give support, but some might find it too difficult to cope with their own feelings. Others may want to rush in and take over, which can cause resentment.

Friends can be invaluable because they allow you to vent feelings you would not like the person who has cancer - or others in the family - to know about. For instance, you may want to talk about how frustrated you get looking after your partner or how difficult it is to cope.

For some men who find it difficult talking to others about their feelings, caring for someone with cancer can help break down these barriers and lead to richer, more rewarding friendships. However, just like the person you are caring for, you may find some friends you expected to be there for you will keep away, while others may surprise you by becoming invaluable.

I did more talking about how I felt with women, as they were more receptive. Many of my men friends just didn’t know how to handle it.

Over time I had fewer and fewer friends. But the ones I had were people I could ring at any time and talk about the way I was feeling.

It is not only emotional support that is valuable. Practical support - like taking the children off your hands for a while, doing the shopping for you, or stepping in for a few hours when a partner is very sick - can give you a valuable break.

I put my wife in cotton wool and treated her as if she might break. I found it hard to cuddle her properly as I felt it would hurt her I put my wife in cotton wool and treated her as if she might break. I found it hard to cuddle her properly as I felt it would hurt her -even though she told me it didn’t.

However, sometimes you may find it easier and more helpful to seek support from people outside your circle of close friends and family.

Further general information Your doctors and specialist nurses are in an ideal position to give you relevant information on your disease and treatment as they know your individual circumstances. Cancerbackup has a help line (0808 800 1234) and a prize winning video available in English, Italian, Urdu, Bengali, Gujarati & Hindi explaining Radiotherapy & Chemotherapy. Cancernet.co.uk has over 500 pages describing cancer, its management, practical tips and tool which patients, their carers and their doctors have found helpful during the cancer journey.