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Living with dying: Where people want to die

Interview 32

Interview 32

Age at Interview: 50
Sex: Female
Age at Diagnosis: 48
Background: Educational psychologist (part-time), married, one child

Brief outline:Diagnosed with colorectal cancer in 2001, followed by anterior resection of the colon and chemotherapy In 2003 secondary tumour found in the liver, followed by a liver section. Has also used complementary therapies.

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She was shocked when the consultant gave her bad news and then said that he had the wrong notes by mistake.
Print One consultant I had actually gave me very bad news one day and said, “The chemo doesn't seem to be working and there's not much more we can do. There is this possibility of this experimental drug but can't get it in the South West" dah de dah. And then he said, “Oh wait a minute”, he said “I've got the wrong file!”. And so that's a bit of a shocking interview and he just sort of wrote it off as a little joke and the nursing group had turned white and had to sit down at this point and anyway we got through that and I thought it's time to take charge really here. And so we started to do a lot of our own research and found out, yes there were other options, there were other things we could do…

She feels sad that she will not see her daughter grow up but recognises that anger is pointless.
Print I think I've only ever had flashes of anger. There's been... I don't see it as a creative emotion in any way, or I used to think, anger therapy, great girl, let it all hang out. Although I'm not a sort of enclosed person who holds emotions in, I don't see it as a constructive way of dealing with things and I think it can get in the way of actually planning a positive way through difficulty. And so I haven't really got angry. Again, my husband despairs at the things I say sometimes. I remember saying when I really did think that I perhaps didn't have very long, “Well I'll find out what it's all about before most people I know, that'll be interesting because I've always liked new experiences”. I know, it's a strange thing to say but it's sort of trying again to make something positive out of something what's happening to you. I've got... I think my emotions were more to do with being upset maybe. I'm sorry that I wouldn't be here when my daughter grew up and had her own babies or whatever and how much I'd miss that. But on the other hand, if I wasn't there, I wouldn't know I'd miss it, if you get what I mean? Sort of strange logic. Those are the sort of things I could get very upset about but I wouldn't get angry about it. And yeah the medical profession should have helped me more and helped me sooner.

Says it was important to keep her teenage daughter informed all the way through her illness.
Print Well as I say, our daughter was 15, so very into moody teenager, delightful moody teenager, understandable moody teenager and we were absolutely straightforward. In fact we both sat down together and told her after the initial diagnosis and we told her how much we knew. Obviously at that point we weren't completely au fait with the whole situation but I think the most important thing was to keep her up-dated and informed all the way through because I felt that if we hadn't done that, she'd have heard it from somebody else or heard talking on the telephone to somebody and it would have been the most dreadful thing to hear. Information and news about your mum from some other source. And I think that helped her but we've all been very open in communicating and talk through everything but also taking it at her pace because we tell her, but she wouldn't necessarily want to talk about it then. I'm not expecting her to, you know... and being prepared... you know, to have your daughters saying when you tell her, you've got to have another operation or got to have chemotherapy or see you sick again every week out of four for six months. And be prepared to have your child say, “Alright” and walk off, you know and go and watch the telly. That's ok, because that's their way of dealing with it.

Explains that children need time to adjust to serious illness in the family.
Print I'm not expecting them to sit down and say, “How do you feel about it? What can I do?” because they're teenagers and at the moment they're number one and you're down there. But being there when they need to come back and expecting them sometimes to be really angry because their life has changed and trying to understand that, which is hard because you're dealing with things yourself and your life has changed but their life's gone out of kilter too. And simple things like... our daughter was never used to having me at home and she loved coming in the house after school on her own, chilling out for an hour, eating the wrong foods and watching unsuitable television, and suddenly I was here, and she thought, “Oh god”. She thought it was awful. You know, I know it's not supposed to be like this, families, but we've sorted that out now. And now I'm better, I try and walk the dog at the time that she comes in, you know, trying to keep things in some ways the same and although of course they will never be the same but, you know, giving teenagers the room to spend some time to mull things over and want you to just be the same as you ever were and that's not possible but that be done gradually, you know.

She found great support from a healing group and from other people's prayers.
Print I haven't got a particular religious beliefs, although I do feel I have a spiritual life and...so I wasn't the there was no sort of fear about it I mean, you know... but it wasn't a huge dimension not at all. Although one thing I found very useful, very helpful and supportive was what other people's beliefs brought to me. A friend of mine did a regular Reiki healing with me and a couple of friends gave me crystals that had been personalised for me and all sorts of things like that and I joined a healing group and got an immense amounts of support, huge amounts of support. And I don't I mean... I cannot say what it is within the healing group that makes you feel twenty times better when you come out than when you went in, but it does, you know. So there are lots of things like that around, so I'm not doing all this on my own. I don't feel like this wonderful person who can cope with all this, you know? There's this huge network across the globe. I've had prayers said in so many different countries. I can't tell you and I think, “Oh we don't deserve these”. And across every religion and it's wonderful. You realise what part of a huge community you are and how many people in every continent... oh crikey yes, I'd forgot about such a person and then somebody would find out you know someone who knows you who lives in deepest Africa will eventually find out and make contact in some way, even it's though it's just to say "I thought about you watching the sun come up today I'm thinking positive things", you know, and it's just wow. And it's so nice in a way. You know when people die everybody says, “Oh that was so nice and do you remember when they did this and did that and you know they were a really nice person”. They don't tend to say it to you face to face but when you get dead ill they do. Then they'll write you a letter or they'll say you know, "I remember when you helped me". Or they'll send you a flower and it's like having your memorial before you're dead and it's very reaffirming. It makes you feel good and I believe in the power of those things to help you heal.

Her illness has made her relationship with her husband even better than it was.
Print We've talked about the support groups the healing groups and the importance of sharing things with people and not holding it in yourself. Have you been able to talk to close friends and family members, apart from people in those groups? Yeah, yeah, yeah. I mean, we don't have much family. All our parents are dead. It's a relief that mine aren't here to go through this with me, but we do have a lot of friends and some very close friends and our phone bill went sky high, as did other people's, phoning me. Yeah, I've kept a very open dialogue with lots and lots of people and I mean yeah we trod the road together really. You and your husband? Oh yeah. Absolutely. I mean we've always had a long and wonderful relationship but I didn't think it could get so much better but it actually has done. I mean our depth of feeling is about a million times deeper than it was. We didn't know that those depths were there but again going through something like this is incredibly bonding. And we've sat up in the middle of the night with pots of tea and tears and we've laughed and cried together. We've been through the bad news together, we've been through the good news together and it's made us value each other in a way we didn't know was possible and that's the great thing about this.

Thinks that great comfort can be drawn from other religions even if you are not religious.
Print I think there's a lot of incredible comfort to be drawn from other religions, even if you're not religious. Just their sort of philosophy and their approach that is death is just the end of this part of existing. Not necessarily the end of everything and yes, something to be mourned by others but you're not going to be doing the mourning. And I think again it's a question of choosing whatever helps you in your predicament from whatever source and not restricting oneself to what you've been part of or used to in your own life, or the way you were brought up. There are alternatives there to look at and explore and if they help you that's great.

She would not want to be a burden on the family if she were desperately ill.
Print When you've talked to your husband, what sort of things have you spelled out? Well I mean, it's sort of things that in fact I'm sure we've talked about before, but I suppose we'll just put them in more... in more concrete terms and my husband did help a friend of ours look after his wife who died of cancer, and she was very ill at the end and had no quality of life whatsoever. It was, you know, a dreadful strain on all the family and I would never ever want that for us and... ultimately if I'm desperately ill and can't be cared for here, then I'd be happy to be in hospice care and he must think of other things as well as me, our daughter and family life. We know, because we nursed my mother here, that it can be an incredible strain, an incredible strain. No matter how much you love somebody I think it's such a terrible strain. And I suppose that's the only thing, deep down that will sometimes wake me up or make me fearful. I don't want to be; I mean everybody says they don't want to be, that dreadful burden. I'm prepared... prefer to say goodbye in a much more loving, rational situation and when you've got more control over your bodily functions, or more or less your mind.

Health professionals should listen to patients.
Print I would say to professionals that they really... I know it's probably been said before, but, listening is one of their most important functions. And listening isn't something you just do with your ears in front of somebody. There's a process called active listening and that involves, you know, asking the right sort of questions, making them open ended so that you're not just saying to the patient, “Are you feeling a bit better now?”. You're only giving them the option to say, “Yes” or, “No”. There are certain ways of asking questions and you will get more information and you can make better informed decisions. Listening for me, is what I want professionals to do, and I know they're all strapped for time, but it doesn't have to be the consultant, I mean there's lot of other people who could do that listening. As I say there was this nurse co-ordinator that I dealt with. She's been great. It's a very important new post and she has time to do that listening, go away find out things and come back and yeah, I think that is one of the primarily important things is to listen to your patients and facilitate their responses by asking the right sort of questions. And they can go on courses which actively taught by psychologists.

She says that information is important because it allows her to work with her medical team.
Print I'm working in partnership with a team rather than being passive patient if you like and feeling, feeling that you can only have things done to you, rather than being part of the decision making process and full, fully informed, which we did very much feel when I went and had the liver section. So it's all a waiting game, you have to wait again for scan tomorrow and then the results and, you know, it could well be that you get recurrences, that have moved on anyway without knowing, but we've gone, jumped from sort of 3% survival at 5 years up to 40% survival at 5 years, and you know, it's a it's taught me that it's not so much what is said today about your condition, there are things happening all the time, there are developments going on all the time and things change all the time and it's keeping yourself abreast of those developments and making, making choices based on your information. Information is power and I mean it can be that, you're asking yourself to do those sort of things, find out those sort of things at your most vulnerable and most weakest time in your life and a time that you're sort of absolutely strung out in fear and foreboding but it can help so much I think because you know it does give you a feeling of, of autonomy to some degree and it's making those choices. I know that's not possible for everybody and I think that's what this sort of project is so valuable for, cause it is important to have [laughs].

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