Janet - Interview 10

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 was told very little about CLL* and had no access to advice between her watch and wait consultations; neither her GP or the leukaemia charities could answer her questions.

Tell me about what it’s like to be put on watch and wait at the beginning.

 

Well when you’re first diagnosed you have so little information and so little knowledge and nobody wants to tell you anything in case it frightens you, which frightens you even more if you want to know something. So you get the various books from the various organisations and charities and they tell you the bald facts, which probably frighten you more because they’re written by professionals not by people who are actually experiencing it. And if the watch and wait to begin with, as I have found with several people that I support, they just find it very, very difficult. Because you have nobody to contact if something occurs and you think, ‘Well I’m not going to be seen for another six, nine months, who do I contact?’

 

So you go to the GP and with the best, and I do have two superb GPs, and you ask them and they say, ‘I’m sorry I don’t know. You’ll have to ask the specialist when you finally see them but I don’t think it’s worthwhile kind of making another appointment yet.’ So there’s nobody you can ask, and even when you contact the various charities they all, as is correct, say, ‘Well we’re not really able to give out medical advice.’ So who do you ask? Watch and wait is a form of water torture I think actually. If there were nurses available that you could phone up and say, ‘Look. I’ve got this problem. Should I expedite my next appointment, or is it safe to wait, or could I just come in and talk to you?’ But there’s no back up as far as I’m aware. No back up whatsoever.

 

So they don’t say, you know, ‘If you’re ever worried you can ring up the clinic’?

 

No.

 

No. Mm.

 

In fact at the local general hospital there was nobody actually called a leukaemia nurse there. I think they’ve finally got somebody who is part time who works three days a week, 9.30 until about 2.30 and working mainly in the chemotherapy unit, which is appropriate but, you know, even watch and wait on low grade you still have your worries.

Janet had received contradictory advice about the safety of massage and reflexology for people with cancer; she found reflexology very relaxing and usually fell asleep afterwards.

Massage. I have had conflicting advice over massage. You try, I’ve asked my GP and I’ve asked my consultants before, ‘Is massage okay?’ ‘Oh yes. Yes fine.’ And yet when I had had the breast cancer and I was invited to one of their kind of pampering days, that I think Breast Cancer Care does, I was not eligible for reflexology or massage according to their lights in case it disturbed things. And yet following the pneumonia, several times during when I haven’t been well I have somebody who gives me reflexology. And I find that very beneficial. It’s expensive but very beneficial.

 

You said the reflexology was helpful. In what way does it help you?

 

It’s an interesting thing. It does relax you completely. I found it quite delightful. And I always go off to sleep afterwards. It is lovely. Really nice.

Since she became ill with chronic lymphocytic leukaemia and breast cancer Janet's husband has been doing some of the housework and gardening that she used to do.

Tell me a bit more about how your husband has coped with you.

 

He said the other day apart from living on a roller coaster with me I hadn’t done some cleaning. I noticed that the new shower unit’s screens became more and more opaque with the hard water drops. And it had almost got white because I hadn’t cleaned it, and I don’t think men notice the same things that women do when it comes to housework etc. And he finally said, ‘Have you noticed the shower?’ And I said, ‘Yes. I haven’t been able to clean them. I’m just too tired.’ But I said, ‘I’m feeling better now I’m not taking the letrozole so I’ll clean them.’ And I’ve had two goes and they’re coming up all right now.

 

So he said, ‘You’ll have to regard me as your Molly Maid.’ Well Molly Maid around here is a kind of local cleaning service. So he said, ‘If anything needs doing you tell me.’ He’s very good. When I am particularly, when I was ill with the pneumonia or the breast cancer etc. he does the shopping. He will cook but we rely mainly on ready meals when he cooks. He’ll do the ironing of straight stuff, you know, household linen and his clothes. He will put the washing out and bring it back again, though I have to sort it before we put it through because it’s easier. Otherwise we’re going to end up with pink shirts from red socks or something like that. He does the cleaning. So if you wish to write your name on the television in the dust you’re very welcome to. He will clean the windows but I would love to have the energy to do it myself.

 

And he does the majority of the gardening now. I used to do a lot of gardening. I can’t bend over because I’m so breathless and also I’m too tired to do it.

Janet's activity levels and social life have dwindled; shopping, entertaining and driving are exhausting and she cannot help her elderly mother.

I mean I now am no use after three o’clock except for cooking lunch. 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 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. But now 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 a 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 contacts with the family are actually decreasing and I’m becoming more and more isolated.

 

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. 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.

Because Janet's chronic lymphocytic leukaemia (CLL) will not get any better and she and her husband are ageing, they have spent money on a new car and home adaptations to support them in old age.

And yet, another thing I have done when I had some money maturing I arranged to have an extension built at the back of the house which has got a downstairs toilet. And because I thought as we’re both getting older and I’m getting older faster than he is, that would be useful. And we are buying a car this week which was higher off the ground, easier to get in and out of. And I said, ‘We can stay here. The only other thing we need in due course is a stair lift.’ We’ve had the bathroom changed round as well because I found that getting in and out of the bath was difficult. He agreed so we’ve gone for a shower, completely new bathroom with shower unit etc. with a shower seat in it, none of which have we received any grants for. So yes it is expensive.

 

Did you try and get grants? Where would you get them?

 

We’re not quite eligible. Because I have a small pension from the NHS we’re not eligible. My husband has just the state pension and I have a part state pension because I took time off to bring up the children and a private pension from the NHS. And we’re just above the level to claim anything.

 

So you can’t have any benefits of any sort?

 

No. We are the poverty trap. My mother who has nothing does far better than we do.