Lymphoma

Feelings during treatment

A cancer diagnosis can cause a range of emotions such as shock, anger or fear (see 'Learning the diagnosis and treatment plan'). To some people the diagnosis seems unreal until treatment starts, and coping with treatment can be traumatic and frightening.

Some people recognised that in the early stages of treatment they hadn't wanted to admit to themselves or others that they were seriously ill because they were frightened. They tried to keep their lives as normal as possible and didn't want others to treat them differently. A woman who gave birth shortly before her diagnosis said she couldn't allow herself to be unwell because she had a baby to look after. 

A young woman said it took five years before she could say she'd had cancer. She felt angry and resented being told she was lucky to have such a curable type as Hodgkin lymphoma. The treatment made her feel more ill than the lymphoma itself and her post-treatment check-ups were unwelcome reminders of her illness. A man whose Hodgkin lymphoma relapsed became angry that it hadn't been cured and that he would need more treatment which would make him infertile. 

The word 'chemotherapy' can frighten people who have preconceived notions of what it is like. For some the diagnosis became real to them only at their first treatment. When told she needed a central line put in her chest to administer chemotherapy, a woman said, “I'm not having a tube sticking out of me for six months because that's what ill people get, and I'm not.” When she came round from the anaesthetic and saw her drip stand she accepted her membership of 'the ill club'. By contrast, a man expected his chemotherapy to be fine and joked with the nurses when the drugs were administered but soon started to feel ill. A woman who thought that six months of treatment seemed interminable and was keen to start, became upset when it was delayed.

Some people had felt happy during their treatment because they were confident it was working. A woman who had chemotherapy over a long period said it became a way of life. Some accepted that although the treatment disrupted their lives, they just had to get on with it. One man found it helped him to try to purge the lymphoma from his body by swearing at it in the shower. 

A man who spent five months in hospital said that he felt dehumanised by his treatment. Diamorphine gave him an artificial sense of happiness but he disliked the loss of control that went with it and found it difficult to come off it. Another worried about whether his response to treatment was normal. Others said they had been so busy dealing with the practicalities of treatment that it was easy to ignore their feelings until after it finished. 

Several people described the time when they had felt at their lowest. For one this was when he felt weak having starved for several hours before having his central line fitted. For another it had been when her chemotherapy was delayed for the fourth time because of low blood counts. For others it was when they had to struggle to hospital for their last treatment while suffering from the cumulative effects of chemotherapy. Having finished the planned treatment cycles, some people were told they needed more and found it hard to motivate themselves. One woman had been distraught at leaving her children to stay in hospital, but tried not to show them her feelings. A man in hospital for a stem cell transplant had felt isolated from normality. Some people said their lowest point came after they had had several courses of unsuccessful treatment and didn't know what else the doctors could try. Other things that happen can add to the burden of illness and treatment. For example, an unemployed man living in a remote place became depressed when he couldn't get to hospital for treatment because his car broke down and he was refused state benefits. 

Some people described turning points in their attitude to their treatment. One woman's first turning point was when she survived a bad infection. Another was when, after several unsuccessful treatments, she decided it was working and she would survive, despite her doctors' doubts. A woman who became upset at her first two treatment sessions decided at her third that she was happy and would not get het up again. Both women achieved remission.

A man in hospital watched a war film containing a motivational speech to the troops and likened this to what he was going through - that gave him a fighting spirit. A woman disliked people referring to her cancer experience as a battle because not all the strong people won. She preferred to call it a journey because people have little control over it.

During treatment some people considered that they might die from the illness. Some were frightened but took comfort from talking about their fears, as well as their health professionals' positive attitude, or thinking that the treatment was working. Some had woken at night worrying. Others had not been scared of dying but worried about their families. A woman who knew the chances of her surviving a bone marrow transplant were low planned her funeral but felt serene not distressed. 

Some people found it difficult to deal with other people's feelings as well as their own. That led some to try to hide how ill they felt and to maintain a sense of normality, particularly for their children, and also to avoid talking about their fears, or go to hospital appointments alone.

A few people had never thought they would die from their lymphoma or that their lymphoma experience had been unduly worrying or traumatic.

Last reviewed February 2016.
Last updated February 2016.

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