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Lymphoma

Support from family and friends

Support from family and friends can be crucial in coping with a serious illness. Many people had received either emotional or practical support from different individuals. Some had sent cards and flowers, had listened, or prayed or fasted for them; others had done shopping, cooked meals, helped with childcare, provided lifts or accompanied them to hospital. People sometimes said family relationships became stronger as a result of their illness, others said they relied more on friends. 

 

Never felt alone having had many offers of help and support from friends, neighbours and parents...

Never felt alone having had many offers of help and support from friends, neighbours and parents...

Age at interview: 37
Sex: Male
Age at diagnosis: 36
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In what ways have they supported you, I mean everyone, not specifically your parents, is it practical support, emotional support?

Emotional, offers of practical help and support, most of them you don't take up but the thought is there and the offers are there and just, even just asking how you are, you know people care and that their thoughts are with you. And just in general conversation even, 'If you want us to look after the kids, if you want some time off, if you want to do this, if you want to do that, if we can help', if they can help my wife by taking the kids, there were so many offers. It was excellent.

People were, most people were very, very good, helpful, supportive, I mean our neighbours have been brilliant, friends, offered to help, do whatever they can. It's amazing how many people are behind you in something like this. Other parents at the school, the school, their attitude towards the kids, it's just, you're never alone, you've always got other people. And in the day room having chemotherapy you're like your own little support group really, you know, you're talking about it and you're laughing and joking saying well, this bit fell or whatever and it's, you go through it together, you're never left alone, there's always somebody there for you, which was fabulous. I mean that's really been very, very good.

 

His illness pulled the family together, helping to overcome tensions in the household; his...

His illness pulled the family together, helping to overcome tensions in the household; his...

Age at interview: 17
Sex: Male
Age at diagnosis: 14
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And how did it affect the family - you becoming ill?

Well, it kind of brought ourselves together, because there was lots of stuff going on at home at the same time, with my dad, kind of thing, and now he's moved out, but at the time, there was a lot of conflict in the house, and I think me having cancer gave a new sort of, new light to everything, and rather than everyone been so, they had more stress from me being ill, but I thought it was kind of a good thing, because it pulled everyone together, made everyone realise that it's more important than just arguing and stuff. And everyone sort of' I don't know, looked at everything in a different way. It changed things the way they were.

So, for positive?

Yeah. It was. I found it was more positive than it was negative, having cancer.

And how did you feel? How did you feel with the support that your family gave you?

It was good. It was, I felt at least there's someone there. Well, my family are really religious and stuff, and everyone in my, like all the ladies and stuff, they're always doing fasts and everything, and my aunties, all of them did a fast for me, and they carried out ten day fasts, or two month fasts or whatever, and my mum did some, my grandma did some, my auntie did some. I've got relatives in India who did them as well, when they found out about it. And everyone was really supportive to me. They were really worried at first, when they realised how, that I was getting along with it OK and everything, that gave them hope as well, and they prayed for me all the time, and was really nice about it. I felt better.

So part of the religious rite was fasting?

Yeah. Sort of thing. You fast, there's always fasting and stuff going on for different, on Tuesdays or Mondays or Sundays, there's always a day fast for a different purpose, but one of my aunties, she did a two-week fast for me, for the purpose of me to get better. So that was really nice. And Mum did it every, I think it was every Saturday, or every Tuesday or whatever, and it was probably good to show that they cared.

Which religion?

Hinduism.

Hinduism?

Yeah. 

OK.

So fasting is to ask for me to get better or something. I thought it was really nice, I appreciated them doing that for me.

So you felt support and'

Yeah.

' and love around you?

Yeah.

Those with spouses or partners often praised them for accompanying them to hospital appointments, visiting them in hospital, giving practical care, raising their spirits, listening to their moans and putting up with their moodiness. A woman whose husband took early retirement when she retired on health grounds described him as both her rock and her pillow. Another had gained emotional support from her partner and said that health professionals did not give such support. 

 

His wife went with him to treatment sessions, gave him injections, flushed his central line, kept...

His wife went with him to treatment sessions, gave him injections, flushed his central line, kept...

Age at interview: 57
Sex: Male
Age at diagnosis: 44
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But without a shadow of a doubt having somebody, in my case my wife, fully supportive, I don't mean just at the time of the treatment, which she was, as mentioned actually administering injections and flushing my lines, you know, the physical aspect, being present with me during the treatment, but since, putting up with an awful lot of nonsense. You know, you could become very irascible at times, and I know that. She knows I know that. And there's no point denying it. But she's been there in every sense. I mean she has a part-time job. She also works in the business. Runs the home. We have three children, we have grandchildren, we've got more grandchildren on the way. She's a very, very busy lady. And it's just invaluable that kind of support. I think without it, it probably is quite easy to sink into a bit of a morass of self-pity at times, particularly in the recovery period. But basically she doesn't stand any nonsense. She's very kind but doesn't stand any nonsense. And if something's wrong she'll want something done about it, but otherwise she keeps you going, keeps your spirits up, which is wonderful.

Women told us that their husbands took on additional household chores or childcare as well as giving hands-on personal care. Husbands were also aware that their wives were managing roles that they had been accustomed to perform around the house and garden (also see 'Roles, relationships and sexuality'). Several people commented that their partner had a very difficult time - some even thought it might be harder to cope with than being the patient. One woman said her husband had contained his feelings while looking after her and was close to a nervous breakdown when she achieved remission. Illness can put a great strain on a relationship - some people argued with their spouses; and some spouses couldn't help much because they had their own health problems.

 

Her husband had to do household tasks that he'd never done before including clearing up after her.

Her husband had to do household tasks that he'd never done before including clearing up after her.

Age at interview: 70
Sex: Female
Age at diagnosis: 69
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But things have improved, I've managed to get on with, and watching my husband do the housework as well, watching he's missed that bit and that bit all the time. But he's been very good to me, he's had to do things that he's never done his life, I mean not nice things either. Sometimes when I've been very poorly he's had to clean up a lot of mess and he's coped with it. And I think he's been very confused and, more than me really, I think I've taken it positively and I've accepted it just because it's got to be done, you've got to do it, which I suppose when you've brought up a family you, that's the way, your attitude on life is like. Whereas your husband goes to work and doesn't see half the things that happen and he's had to do those sort of things. But with a bit of help and training he's not done too badly [laughs]. 

Grown-up children provided support by visiting, providing a break for spouses, giving lifts or accompanying people on hospital visits, offering temporary or long term accommodation, sourcing information about the illness and updating friends and family via email. One woman rented a flat in a different city to obtain treatment that was unavailable where she lived. Her daughter, who also moved to the new area, invited her to live with her.

 

One daughter finds information and updates people via email; the other is giving her mother a...

One daughter finds information and updates people via email; the other is giving her mother a...

Age at interview: 61
Sex: Female
Age at diagnosis: 60
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And what about your daughters? You said one was very good with information?

Yeah.

And you were going to live with one in the future?

Yeah. Yeah, Yes, they're very different. The one is like a sort of librarian and filling all my information needs and doing this emailing list, which is wonderful because I don't have to repeat what's happened to me each time when people phone up. They know exactly, they've heard the latest bulletin and they're often ringing up in response to that, and she also got a book for relatives of people with cancer on how to help, which has been useful. 

And the other daughter is, she's got a whole lot of problems of her own at the moment and she's said she's been thinking about me every day but it doesn't often convey itself into reality, into actuality but she's done this wonderful thing of buying a house in a place where I can have the treatment and have my address and not need to worry about whether I qualify for the treatment there still so she couldn't have done better and so they've both been extremely helpful and supportive in their own way. 

Many parents of young children try to protect them from the illness and minimise the disruption to their lives. But children often want to visit their parent in hospital and their visits could be uplifting. One man's young daughter had watched him having various procedures done in hospital.

Young, and especially single, people often relied heavily on their parents to look after them during their illness. Parents accompanied them to consultations and treatment sessions and sometimes stayed in hospital overnight. A man, aged 22 at diagnosis had found it useful having his parents at consultations to ask questions that he wouldn't have thought of. Having previously left home, he moved back to his parents to be looked after. A 16-year-old at diagnosis said her mother had wished she could have the illness for her. 

 

His mum often looked after him on the hospital ward, staying till late at night, and his brother...

His mum often looked after him on the hospital ward, staying till late at night, and his brother...

Age at interview: 17
Sex: Male
Age at diagnosis: 14
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So your mother sometimes stayed with you in the hospital?

Yeah. she stayed about four or five times, she stayed up here with me, normally she stayed until late night or something, and then had to go back, she had to take my little sister to school, so she went late at night, about 12 o'clock, and sleep at home, and came in the afternoon or something, or my brother would pick me up at night. So Mum was, since the morning or afternoon when I went there, my mum would stay with me for the whole during the course of the day. At night she'd go home. I'd lie there for a bit, play play station and things, and then my brother would come over in the morning. When I'd finished my treatment, I'd call him, and he'd come over and pick me up in the morning and drop me home again.

So your mother was dividing herself between you'

Yeah.

'and your little'

Sister.

' and your sister?

And my brother would do that with me and the family and everything as well. So as, I felt a lot of support at the same time, which helped as well, helped me feel positive. If they ever stopped showing that they care, that would have set me back as well, made me feel more alone, which I wouldn't have been so positive about. So I think their support helped me support myself as well.

So that was important to you?

Yeah. Mmm.

 

Her parents had protected her by covering up how potentially serious her illness had been when...

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Her parents had protected her by covering up how potentially serious her illness had been when...

Age at interview: 41
Sex: Female
Age at diagnosis: 11
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Over the next sort of two to three years, I mean I've, as I said, my mother kept a diary just sort of recording every time I went for chemotherapy. It was really, to me just became a way of life. I think I just accepted it. I never realised at that time, because this was 30 years ago, that it was actually a very sort of high possibility that I was going to die. I never knew this and my parents were very good at saying, 'Oh, you're doing fine', only ever giving me the positives. So I never really realised the severity. Only now as an adult and having gone on and done nursing myself realising how absolutely terrifying it must have been for them. But they were extremely good at covering this up and pretending that everything was good, and only ever letting me hear the positives of it.

I mean that they dealt with it and I was never aware of it. I mean they're both very, very aware of the fact that they had to protect me from anything. So I was never aware of this. It was not until afterwards talking to them and they're both, I mean and they both recognise that now. And I mean they've just celebrated their golden wedding and so they got through that period but it must have been very hard for both of them, especially my father because he had to stop work for a while, a very proud man. He was able to do everything. And suddenly he wasn't allowed to because he'd had this problem. And his health wasn't great so he had to accept that he wasn't allowed to be strong for a while. And he had to take a back seat and not do too much himself. And I think that must have been very hard, but they did, they certainly, they dealt with it and pulled through it together and throughout the whole thing were wonderful parents. I never picked up on any of this. But it's only afterwards talking to them I realise how much pressure that had put on them. And they'd had to deal with it but it must have been extremely hard for them. And the fear, of course, because there was always that horrible thought at the back of their mind maybe I wouldn't make it. So that must have been quite a challenge for them.

Sometimes illness leads to unexpected contact from family which is not always welcome. For example a 20-year-old had become upset when her estranged father visited her in hospital and gave her a cuddly toy, which she found inappropriate for her age.

Young people said their brothers and sisters often tried to be supportive or protective, but some preferred it when a sibling just treated them normally. Adults said their siblings helped through talking, or by visiting and doing housework. One woman said her younger brother recorded music for her to listen to during chemotherapy and, when she got a serious infection, her sister walked out of an exam to rush her to hospital (see 'Infections during and after treatment'). One woman said she and her brother weren't close but had been in email contact. A man said his brother and sister had been no help. 

Adults said their parents had often been supportive by visiting them when they were ill, coming to look after them or looking after their children while they attended hospital. A man whose parents lived nearby said he went to their house when he wanted looking after. A woman said her parents travelled for four hours to be with her after her diagnosis, and her father, who was retired, came every fortnight to take her to chemotherapy sessions, saving her partner or mother from taking time off work. Parents sometimes found it hard to show their true feelings and fears' one woman said she had desperately wanted her mother to cry about the diagnosis but instead she hid her feelings and adopted a fighting attitude because she thought that's what her daughter needed. Another said her mother had been unsympathetic, saying she only had a 'minor cancer'.

 

Both her parents were doctors and found it hard not being able to help her; her father suggested...

Both her parents were doctors and found it hard not being able to help her; her father suggested...

Age at interview: 35
Sex: Female
Age at diagnosis: 31
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How do you think your parents coped with the whole thing in general?

I think they found it really difficult actually. I think it must be very, well, when your child's ill, even if it's just a cold or something, it's very worrying and I know that now because I'm a parent. And when I think about how I would feel if my daughter had to go through chemotherapy and all the kind of stuff that I've been doing, I would just be beside myself. And they are doctors and there's nothing they can do. I mean that must make them feel so impotent and unhappy. And I know it does and we had a', I have three siblings, I have two sisters and a brother, and I do remember that, that I had a couple of conversations with them where they were saying, 'We just want you to know that Mum and Dad are behaving a little bit madly at the moment. And they are, it is noticeable, they are terribly anxious. It's not you being mad, it's them.'

I think my dad to begin with wanted to find something less sinister that it could be. And was saying, 'Well we should get a second opinion', and, 'I've seen cases where'', and dredging from his memory all sorts of one-off cases where something had mimicked lymphoma or whatever. And I could see that he was desperate for it to be a misdiagnosis. And because that was something he could then take control of by finding me another doctor that he knew that would be able to magically say, 'Oh gosh, that terrible doctor is a complete charlatan whose misdiagnosed your daughter. How terrible.' And we could all go, 'Oh phew, thank goodness for that'. And I think he held on to that for longer than was realistic. 

And I remember one particular occasion before I started treatment but after I had been diagnosed, and we met up for lunch, my mum, my dad and me and my sister, who is also a doctor. And dad was still saying, 'Well I think we need to get you a second diagnosis. And I've seen cases' and so on. And afterwards my sister and I went for a walk and she said, 'I've just sat opposite you through lunch and I'm looking at you and you're a Hodgkin's patient and I can see it now. It's really clear to me. You look like a Hodgkin's patient. I see your lump. It's a Hodgkin's lump. You do have Hodgkin's disease and I don't want you to take from Dad's anxiety any false hope that we can go and get a second diagnosis, because I truly believe that that's what you have.' And that was what I mean, I said before that I found my sister really very supportive and helpful from a medical point of view. And that is an example of where she was really very helpful. 

And my mum I think was also, found it really difficult but was able to help in, to support in quite a practical way by visiting, by coming and looking after my family when I wasn't able to, and making me' oh God one time the only thing that I fancied eating was chicken super-noodles so she made them for me and brought them up to me in bed. She was able to care for me in a very maternal way and I think she probably found that quite helpful in terms of responding to it.

But I think they both found it very difficult. You know, and I know that so did my grandparents, you know, who said over and over again that they didn't think it was just that I should be having this when it ought to be them somehow and, you know I think that is a difficult thing for a generation, an older generation to accept that somebody younger is ill.

It can be hard for friends and family to know what best to do when someone is ill. Serious illness can be a testing time for friendships as some people find it difficult to talk about illness or to know how to help, and some people who are ill find it difficult to accept help. People voiced disappointment when friends they had expected to be supportive were not. A young man who spent five months in hospital had felt lonely because his friends stopped visiting after a while. Offers of help sometimes came from friends who they considered less close. Some friendships were lost but new ones gained. In their attempts to help, some friends offered things that weren't welcome, but those who asked how they could help - and kept offering - were very much appreciated. 

 

His friends reacted to his illness in different ways: some didn't contact him while a few were...

His friends reacted to his illness in different ways: some didn't contact him while a few were...

Age at interview: 41
Sex: Male
Age at diagnosis: 28
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What about friends and colleagues?

In what respect?

I mean did they, perhaps visiting you in hospital was difficult with the infection risk, but did they kind of keep in touch with emails and cards and things?

No, I see, good point. Yeah I mean I think you're touching on something that I think is quite a big issue with things like cancer. There are those people that can deal with it and those people that can't. And a lot of my friends just, I don't know, they sort of, we didn't hear from. Whether that was because they just thought, 'Well don't want to contact him because I wonder if he's getting worse or he's getting better' or, I don't know, I think there was a lot of that, just that sort of a nervous and uncertainty aspect of it. Then there were those who were just head in the sand and actually couldn't deal with it, some of my family were like that. And there were those that kept in touch and those that just said, 'Yeah hi, I'm coming up'. Went out, sort of thing so, 'Come and say hello'. And it's quite a defining time actually, you realise exactly who is around, who really does genuinely want to sort of be there to help out, and yeah there's a, you can count them on one hand, there's a handful of people that were particularly strong and helpful. So yeah I think that's normal in life isn't it, that's the experiences you have.

 

Was touched by offers of help from friends and learned that people like to be told how they can...

Was touched by offers of help from friends and learned that people like to be told how they can...

Age at interview: 35
Sex: Female
Age at diagnosis: 31
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Has everybody been supportive to you? You've said a lot of nice things about a lot of people?

I think so. 

Are there any exceptions, surprises?

Most of the surprises have been good. I've been really touched by the way that people, by ways that people find to be supportive. Particularly people that are sort of on the edge of my circle of friends. Rather than mean, I've had no surprises really from my very close friends. But somebody e-mailed me and said, 'I'm not really sure how to help you, because I want to do something but I'm not sure what the best thing to do is. And I wondered what you were reading at the moment because I want to send you some books.' And I was really touched that that was their approach, that that's what they decided to do. They clearly wanted to help. They didn't really know how. They don't live nearby but they wanted to do something. I thought that was lovely.

I suppose, I think this, the second time round one of the things that I've found difficult is that it's less interesting and exciting for people. And I say exciting in a, you know, I don't think people go, 'Yeah hey she's ill. That's really exciting.' But I think it makes me a more interesting slightly unusual friend to have. And I guess in a way I have felt disappointed with the relapse that there hasn't been the same level of communication from friends that there was the first time round. And that's partly because people think, 'Well she's recovered before. I'm sure she'll recover again'. And it's partly because I find it boring the second time around. I imagine other people do. And I think it's' I did find it more lonely this time round because whilst I prefer to do the treatment and so on by myself, what I really appreciated the first time round was the number of e-mails and phone messages and cards and letters and stuff that I got. And there was a lot less of that this time around. And I did feel kind of a bit disappointed in that because I found that really comforting and supportive. 

And I think there is an assumption even from my close friends that it's less of a big deal the second time round. But on the whole I've just been fantastically lucky with the support. I think on the whole people are good. That's certainly what I've discovered that I don't suppose I am incredibly unusual in having very positive experience of people, I don't think there's anything unique about me that means that I happen to know all the good people and everybody else gets the dross. You know, I think that people are good. I think people like to be given, like to be told how to help. And if you can do that people really appreciate it and respond very well to that. And I've been really touched by how people have.

Friends helped with child care, transport, cooking and odd jobs as well as talking about the illness and socialising. Some sent cards and gifts or telephoned or visited regularly. A woman said some friends had 'gone the extra mile' to ensure she had things to look forward to. Some young people were grateful that their friends had been supportive on their return to school or college after treatment, especially if their appearance had changed. One young woman had three male friends who regularly visited her and took her out, making her feel she was having a normal life. Another said her friends gave her a tin containing lots of small presents, one for each day that she felt rough. 

 

Received lots of cards and gifts, which made her feel loved and looked after.

Received lots of cards and gifts, which made her feel loved and looked after.

Age at interview: 33
Sex: Female
Age at diagnosis: 20
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And I know that it actually at the time it was very important, I mean it was like dealing with a crisis, you know, you do that, and a lot of people sent cards and presents and things, I mean the postman used to come round and every day, I mean I got to know him really quite well because he'd have all these things because it was of my generation of friends and my mum's friends I was the first person to get ill and it was quite shocking. And so I think another friend of mine said to me since, 'You know if it had happened ten years later it would have been a different experience, but because it was, I was the first, in a way, not that lots of people have got ill, but I think we got a massive response from people and it was brilliant and something I've learnt from that is to always say to someone or to send a card and say, 'just thinking of you, hope you're doing OK, just let me know what I can do'. 

Because it did make me feel so loved. And that was so important actually because it made me, I actually in that six months I felt like I was the best person because I could do nothing wrong, everyone was giving me all these wonderful kind of positive feelings, they would just come and look after me and do what I wanted. And I mean I never took advantage of it but I just felt like I was this kind of closeted but looked-after person. And in that sense again it was quite a positive thing and because I could ask for that sort of attention without feeling guilty I kind of felt, 'Oh God I've never realised how much you can get from everyone in this way'. 

 

Was immobilised after treatment for a spinal tumour and stayed with friends for 5 years as he...

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Was immobilised after treatment for a spinal tumour and stayed with friends for 5 years as he...

Age at interview: 57
Sex: Male
Age at diagnosis: 51
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You were very fortunate to be staying with those friends, weren't you, because presumably you couldn't have coped living on your own at all during that period?

I think it's probably true that I couldn't have coped living on my own and I needed people around. I had a number of offers of help but I was very aware that I was exceptionally fortunate to have those offers. And I think that, I mean the two friends who put me up it was wonderful and they were tremendous and I made a transition from being an unwanted guest to a fee paying lodger really, reasonably quickly. 

Some years, well a couple of years later someone interviewed me about my recovery and one of the people I was staying with sort of passed through as I was being interviewed and I said, 'Hey, come and sit down with us for a few minutes and tell me what you saw, what happened.' And he said, 'Well firstly I was amazed at how supportive your friends were and how many people sort of rallied round and did things, even before you went into hospital. And secondly, and you might not like hearing this, but we thought it worked better because we didn't know you that well. How it would have been had it been one of our children who was ill it might have been different.' And when we talked about this I said, 'Yeah and I think that worked very well for me because it gave me a stability to be in a house where basic things were being done, the shopping was coming in, meals were coming on the table, and yet you were giving me some distance and we didn't have any emotional stuff to resolve or there weren't any things interfering'. 

And I've spoken to one or two people since about serious illnesses and sometimes that can add, sometimes people can be too much in your space, I think, because there's something about a serious illness that puts you into yourself, you sort of go into yourself a little bit and try to process what all this means. And I think the worst thing that can happen is if there's things still to resolve in relationships, major things. And I think in a way it helped being in a household where we'd known each other for fifteen years or so but we didn't know each other from a close emotional basis. And that made it an interesting experience.
 

Work colleagues, teachers and other acquaintances were sometimes supportive. A GP said he had received cards and good wishes from his patients. Even relative strangers could be very helpful - a woman who had to move to obtain treatment that wasn't available where she lived was helped by a friend of a friend who lived nearby.

 

A friend of a friend supplied her new flat with essential food when she was discharged from...

A friend of a friend supplied her new flat with essential food when she was discharged from...

Age at interview: 61
Sex: Female
Age at diagnosis: 60
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Yes and then I got home at five o'clock on the Thursday having come to the teaching hospital city on the Monday, and of course we'd come from our home thinking, 'There's no point in carrying a load of food because there are supermarkets in every town' but I hadn't bargained for the fact that I would be knocked sideways by the treatment and the pneumonia and that my husband would have had to have gone home. So there I was at five o'clock on a Thursday evening in November with a bizarre collection of food that I happened to have picked up from home because it was things that were going out of date, so things like pine nuts and marmite and nothing decent at all. 

And I felt so isolated and terrified really because I didn't even know where the local shops were. I hadn't seen any local shops on the way there because I'd come through the sort of residential quarter and there was a shop actually in the next street, but I didn't know that and I thought, 'What am I going to do? I've got no food.' It was a huge effort to walk from one end of the tiny flat to the other and somehow or other, I think what saved my bacon really was that a friend of ours had been in touch with a friend of hers who lived in the teaching hospital city and she rang me up and said, 'If there's anything I can do to help, let me know' so I wrote her a shopping list and by the time I'd written the shopping list I was completely exhausted just from doing that, and she, a total stranger, turned up and went to two supermarkets and got me all the stuff.

Last reviewed February 2016.


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