Janet - Interview 69

Age at interview: 70

Age at diagnosis: 63

Brief Outline: Janet was diagnosed with chronic lymphocytic leukaemia after feeling run down and having a routine cholesterol test. Her illness is being monitored not treated. Her activities are limited by tiredness and breathlessness. She feels isolated and depressed.

Background: Janet is a retired NHS Manager. She is married with two adult children. Ethnic Background: White British.

More about me...

Janet was feeling run down and tired and after having one of her annual blood tests to check her cholesterol level received a letter inviting her for an appointment at her local hospital with a haematologist. She attended the appointment and was told she had leukaemia, which was an enormous shock. She had more blood samples taken and was told to return in a few weeks. At the next appointment she was told the definitive diagnosis of low grade chronic lymphocytic leukaemia and that they would adopt a watch and wait policy rather than giving her any treatment.

 

Five years later she was shocked to be diagnosed with breast cancer and tried to find out whether there was any link between the two types of cancer that she had. Her breast cancer was treated with surgery and radiotherapy, the latter causing a reduction in her white blood cell count for a while. She was also given letrozole to lower her oestrogen, which further reduced her energy levels.

 

Some time later she presented in the leukaemia clinic with pneumonia, which her specialist did nothing about, and she was admitted to hospital the following day by another doctor and given intravenous antibiotics. After that episode she lost confidence in her leukaemia specialist and asked to have her care transferred to a teaching hospital, where she feels the staff are more sensitive to her needs.

 

She is in remission from her breast cancer and still doing watch and wait for her leukaemia. She is prone to chest infections which sometimes necessitate a spell in hospital. She suffers from very low energy levels, breathlessness and tiredness which increasingly restrict her daily activities and contact with other people. She struggles with housework and cannot afford to pay for help. She feels isolated between hospital appointments because she feels she has no one to ask about things that concern her. Her feelings of isolation make her depressed.

 

 

 

Janet's activities and social life are limited by tiredness caused by her CLL; she feels guilty that she cannot help her elderly mother.

I mean I now am no use after three o’clock except for cooking a meal. All my social activities have stopped. I used to cook for the WI markets. Can’t do that anymore, haven’t got the energy for that. I used to help run the local WI branch. Certainly now I can’t do that because I’m too tired to go out in the evenings. I tend to have put on a bit of weight. I mean I know I’m a bit weighty but I have put on more weight because I haven’t got the energy to go out because I’m frightened if I go out I can’t come back. I used to do thirteen, fourteen mile yomps, and I don’t do those, I’m nowhere near. 

 

In fact when I was suffering from the chest infection and also the lack of oestrogen, it was all I could do was to go round the shops in our local town on a Saturday morning to collect and do just the shopping in the supermarket. Once round the supermarket mid-week and once round the small small shopping area, I hadn’t got the energy. I was delighted to see that I could walk at a moderate pace instead of just plodding, recently. Because of the continual chest infections I’m so breathless that when I came, I’m doing a patchwork, City and Guilds patchwork, a guild thing, and I went back to the work room the other day, having popped down to the library to get some photocopying done, and the fellow student said, ‘My God have you been running?’ And I said, ‘No I’ve got bad lungs now.’ 

 

So, enough, yes my health has deteriorated. My social life has deteriorated and, whereas I was renowned in the family for feeding the five thousand and I entertained people all day, I can’t do that now. I can give them either tea or I can give them a lunch but I can’t do the whole day. So the contact with the family is actually decreasing and I’m becoming more and more isolated. 

 

My mother lives about an hour’s drive away and the roads are particularly appalling at the moment and it’s very hard driving in the ruts over to her town. And by the time I’ve got there I’m quite exhausted with the traffic conditions and the road conditions. She is not in very good health, being ninety-one, and I feel unable to do anything for her because I know I’ve got to drive myself back again. You could say my husband does some of the driving, but no, I am such a bad traveller and I can be travel sick anywhere. I have so little confidence in him. He’s had his cataracts done recently, so he does see better, but I’m still frightened of his driving because he is quite a lot older than me and his reflexes are a lot slower than mine. So I don’t like being driven. I really am travel sick. 

Janet has chronic leukaemia and takes antibiotics at the first sign of infection; she caught one at a museum despite cleaning her hands with alcohol gel, and fears going to the swimming pool.

You said you were quite prone to infections. Tell me…

 

It’s the chest. It’s…

 

…what kind of happens in a typical infection.

 

Well, the last chest infection which I finished, luckily I have a continual supply of antibiotics which I take if necessary. So this was suggested that I have this supply, and as soon, I start taking them as soon as I develop a cold, and then I see a GP as a, within a two or three days, which kind of carries me on over. This January I travelled over to the Natural History Museum at Tring because they had the Shell wildlife photographer of the year exhibition, which we have seen in previous years either at the Natural History Museum in London or Tring. And it was the end of the school holidays and the museum was full of children hurtling round. Now I do have one of those hand gel sprays which I always use when I’ve been in public places handling doors or hand rails or anything like that. And though I had sprayed my hands continually as I walked around I managed to pick up a bug on that brief exposure, which laid me low for four weeks. And when I say low I do mean low. And as my husband says, living with me is like living on a roller coaster now. 

 

I would like to swim but I’m frightened of going to the local pool to pick up any bacteria. If I had a swimming pool in my own garden I would love to swim. But again, I need to have everything at hand so that if I’m too tired I can go and rest.