People offered many different types of advice to other patients, based on their experiences at different stages of their illness. People are all different and what works for one person may not work for someone else. Here are their suggestions'
Your illness
- When you get the diagnosis of serious illness go home and have stiff drink
- Find information about your illness
- Keep a detailed record of what is happening to you
- Allow yourself a little bit of hope, whatever the prognosis, and don't give up
- Try complementary therapies
- Talk to someone who has been through the same illness experience
Says that it is good to talk to someone who has been through the same experience.
Says that it is good to talk to someone who has been through the same experience.
Age at interview: 58
Sex: Female
Age at diagnosis: 49
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Talking about it has been fantastic, talking to other people. In fact I learned that years and years ago when I was first running my over 50s class. I remember one of the ladies being one of the first persons I remember who'd found her own lump on her breast. She went through chemo and radiology at that time, and it was months, months later that I discovered that I had this, the cancer, and she said to me '[name] If you want to talk, I'm on the phone' she said, 'You will bore your family to tears, but if you want to talk, phone, because I've been through it, I know, I'm the one to talk to, not them' and I can't... I must say that's the best thing that was ever said to me.
I've known several ladies since, in my classes, obviously they've all, we've discovered they've got cancer and I've always said to them, 'I'm on the end of the phone, I've been through it, I'm okay, I'm still here, phone me and we'll talk', and I've had some wonderful conversations. It's fantastic. It's good to talk.
So if somebody's willing to listen, let them listen, just talk it out because it clears the head. It clears it all and it's amazing how many people have known people with it or have been through it and may have the same symptoms. So again this is why this video and site is so remarkable.
- Talk to family and friends about your illness and reconcile any differences
- If you think you might like to go into a hospice ask your GP if it would be possible to go on a preliminary visit to see what the hospice is like
Dealing with professionals
- Make notes before you go to the consultant so that you remember what you want to ask
- Find out who is your key worker (health professional) if you have one
"Everyone should have a key worker such as my hospice nurse".
"Everyone should have a key worker such as my hospice nurse".
Age at interview: 63
Sex: Female
Age at diagnosis: 61
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My hospice nurse says that she is my key worker and I think each person with an illness of this kind needs to see, find out who their key worker is.
One thing that she suggested to me at one stage was a TENS machine; it means Trans Electrical Nerve Stimulation. And I was able to hire one from the local pharmacy for a week and try it out. So sometimes there are things which you might think are expensive, but could be hired.
Yeah.
And it's worth really finding out from, from the local pharmacy perhaps. You know, if things can be hired rather than bought.
- Be assertive, ask the GP to visit you at home if necessary
- Get help from social services - you will be looked after, even if care is not always to the standard you would like
- Don't be afraid of hospice nurses, invite them into your home
- If you feel depressed ask your GP for help
Advises people to consult their doctors when depressed and to keep as active as possible.
Advises people to consult their doctors when depressed and to keep as active as possible.
Age at interview: 61
Sex: Female
Age at diagnosis: 57
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Well I think everybody is individual and it takes you differently. All I know is that when you start to feel suicidal you've gone down so low that its very hard to try and climb back up and I think if anybody does start to feel exactly like that then they really must go to a doctor and get help.
I don't think medication is the be all and end all to help you with depression; it is talking to people who understand what you're going through and I think groups... people can help you on that. Especially people perhaps who've gone through similar and come back up and out you know. I've not always been positive.
Even now I still have my down days but I I've now learnt that they are my down days and sometimes I'm very depressed but again, just like my physical illness, I just go with it. I don't worry about it. I don't worry anymore because having the treatment I had when I had my breakdown I keep going back to that and OK I could be down I think to myself 'you've got to do something, you really have to go do something' because it's like a circle.
If you go down you could stay down and if you don't do anything you go wrong. You've got to try and break that circle and if somebody says, 'Why don't you go out for a walk' and you often turn round and say, ' I don't want to go' , or, 'I cant be bothered.' that's when you've got to talk to yourself very hard and say 'ok', because if you can keep your mind active enough to do something, even just go and sit in the garden or...
I'm not saying at that point you feel like doing any reading or anything but just giving yourself a little bit of exercise just to go out even in a wheelchair to go out to feel the breeze on your face and see the sun, when we get it, we've had a lot of that just lately! But even the rain, go out and just look at shops. Something might just click in you to make you feel just that little bit better. You certainly will be better than staying in and not doing anything.
Practicalities
- Find out where you can hire useful equipment
- Don't be afraid to ask for help from neighbours and friends
His wife says it is important to accept help from friends and neighbours as well as professionals.
His wife says it is important to accept help from friends and neighbours as well as professionals.
Age at interview: 64
Sex: Male
Age at diagnosis: 62
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Wife' If people offer to do errands for you when you're busy you know running backwards and forwards to hospital or just early days when caring takes more of your day, say yes rather than no.
Do you think some people are just reluctant to ask for help then when its offered?
Patient' Yes.
Wife' In my case it's a... I've always coped and 'oh no I don't need help' but when you stop and think about it, that help makes a lot of difference. Because you'
You're really at the point where it's like people are willing aren't they?
Wife' Yeah.
And you've got to pick up on their willingness.
Wife' You've not got to be afraid to say, 'Yes please' and take it. You know just a little help makes so much difference.
And often people want to help don't they?
Wife' Yes. And if you push them away they might not come, they might not offer again or they might be reluctant to come just to visit because they think you've put a shell around yourselves.
Yeah, you've kind of rebuffed them?
Patient' Yes.
- Get your address book in order, and sort out papers
- Make it easier for those left behind
- Make a will and decide what special things you want to leave to other people
Advises others to make a will and 'tidy up' any outstanding matters.
Advises others to make a will and 'tidy up' any outstanding matters.
Age at interview: 53
Sex: Male
Age at diagnosis: 50
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Yeah. So what other advice would you give them?
Make a will.
Make a will, yeah.
Tidy up all your matters. I've tidied up 90% of my stuff. I've got just 10% to go.
You've done 90% of it?
I've only got one last thing. I had the will before and I've put everything in order. I've started clearing out my clothes and so I'll get rid of them to a mate of mine. Sort through my gear but most of that's done. I've ear-marked things I want people to have, whatever, some daft things.
Did you say you'd done some daft things?
Yes, I want some little daft things, what I want people to have.
What you want?
Certain things I want certain people to have because everybody wants to be more than a speck of sand, don't they?
I agree, yes.
- Write about your past and your memories for your children
She advises people to write reminiscences of early years and to sort out papers, but not to worry.
She advises people to write reminiscences of early years and to sort out papers, but not to worry.
Age at interview: 82
Sex: Female
Age at diagnosis: 64
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What other sorts of decisions would you say people need to be thinking of when they reach this point in their lives?
Well, if they haven't already done it, there are things like wills and taxes, putting their papers into tidy order which I continually try to do and never get to the end of. But above all, don't worry. It does no good, and someone else will do anything important. Don't throw everything away too soon. Photos, letters, postcards, all bring back happy memories. Puzzles, board games, playing cards, help pass the time. Writing reminiscences of early years with lots of detail, provides fascinating reading for younger people.
It's a big job, isn't it?
Yes. What else? I think getting one's address list in order, that kind of thing, because people, family will have to find... to get hold of, you know. Much easier for me to do it than for them. Any preparations one can make that will make life easier for them and the more complicated your will, the more important it is.
So have you had to ask people for help with that or have you done most of that on your own?
Anything that's been done, I've done on my own. But it hasn't all been done yet.
There's still more to do, is there?
Lots more to do, I think.
- Get shopping delivered
- If possible, don't have your partner as your main carer - keep the roles separate - it becomes very difficult to have a complete loving relationship with someone who is also caring for you
Approach to life
- Celebrate the life you have had and come to terms with the fact that it will ultimately end
Suggests that people celebrate the life they have had and accept that it will ultimately end.
Suggests that people celebrate the life they have had and accept that it will ultimately end.
Age at interview: 59
Sex: Male
Age at diagnosis: 57
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Yes. Assess your own lives. Assess your life and what has been. Oh, the meaning of life I mean but not in, the meaning of your life. What is it your life has been and its all the positive things. All the times that you've enjoyed.
Life is a mixture of all sorts of things. There are sad moments and there are moments when things have gone wrong and there are things when you can be upset and angry about things, but find the positives. And rejoice in those positives and rejoice in the life that you've had. Celebrate the life that you've had and come to terms with the fact that it will ultimately end. The only difference is that you now know and some people... well it comes to an end and they don't know about it. And I don't know which is worse.
- Remember that death is natural
- If you have religious beliefs, pray for faith
- Eat a good diet, avoid stress, have patience and believe in yourself
Suggests that people eat a good diet, avoid stress and believe that they will get better.
Suggests that people eat a good diet, avoid stress and believe that they will get better.
Age at interview: 65
Sex: Female
Age at diagnosis: 57
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Is there anything you feel you'd like to say to people who perhaps have been given a diagnosis that their illness is not curable?
I would say that they must have patience, a belief in themselves. If they feel their diet is not of a high standard they should try and improve it because it is important.
At the same time they need to spend their time in the company of good friends and to avoid situations which cause stress because enough stress is going on in their lives with the illness, they don't want constant rows or disagreements with neighbours or anything of that sort and to engross themselves in things that give them pleasure.
And what would you say, earlier you were talking to me about, I think you said your philosophy of life, you said you hadn't got a religion but it was like a belief in yourself?
I think you've got to have a belief, a faith in yourself that you're going to do it that you're going to get better and you've got to believe that you're going to get better.
- Do things you want to do before it is too late
Suggests that as soon as people receive a diagnosis of MSA (Multiple System Atrophy), they should...
Suggests that as soon as people receive a diagnosis of MSA (Multiple System Atrophy), they should...
Age at interview: 53
Sex: Male
Age at diagnosis: 50
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If you had a person in front of me now and if they had characteristics I am portraying now, the characteristics of MSA [Multiple system atrophy] - they are quite general, like movement, speech, etc. etc. - I would sit that person down, if he had just been diagnosed, and I'd tell him exactly what was going on so he can make decisions because you cannot postpone anything. If he said he wanted to walk up to the top of Mount Kilamanjaro, that's the time to do it. You don't get a second chance at it.
People have got to do whatever they want to do now and not listen to anybody and just go out and do it. Do their most heartfelt desires because, once this thing starts biting, you can do very little and it's very, very, very frustrating. Don't take 'no' or 'later' as the answers' because that's what I've done.
You mean you did take 'no' or 'later' as an answer?
Yes. I put off something last year. It was something I should have done. Now I thought I could do it this summer but I can't.
I may be able to do it, may be' but I wanted to do it on my own and now I realise how weak I am. If I fall down on the floor, sometimes, depending on how I fall, I can't move. If it happens to me in the wrong place, at the wrong time, I'm in big trouble.
- Enjoy the time you have left
- Get out and have a purpose in life
- Set little targets or goals, not too far in the future
- Keep up activities as long as possible
- Acceptance heals the mind
Says that acceptance is a great thing because it heals the mind.
Says that acceptance is a great thing because it heals the mind.
Age at interview: 67
Sex: Female
Age at diagnosis: 56
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Have you got any particular advice for people where they've been told their illness means they may not have many years to live?
Everybody is so different. Some people can shout, some people can scream, some people are quiet, it's very different, difficult. But acceptance is a great thing. It heals the mind. You know, you didn't bring it on yourself. You didn't make yourself sick. It comes on. You don't know why. So, that's all I can say because that's all I can get from it. I accept it.
- Don't worry about death and dying
- Don't be angry
Last reviewed May 2010.
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