Living with and beyond cancer

 

Well pretty optimistic actually. There’s always, your time horizons start to change. I mean when you’ve got the disease, when you’re going through the treatment you’re just looking for the next day, when you’re in intensive care you’re looking for the next hour. But your time horizons start to change. And people always say to me, “Surely having gone through this you’re not phased by anything anymore, you know, nothing can matter because you’re alive?”, and all the rest of it. And yes, that’s true when you reflect on it, but I still get irritable and I still feel, you know, I still get certain things completely out of proportion, so I don’t know. But another, and the other thing as well of course, as you, as the disease recedes and becomes less part of your life, your horizons start to, you know, you start to think about, “Well, I’m going to be around for a few more years now”, so, you know, you don’t, you can’t live for the day or, not that you ever really do, but your horizons start to change as well, and you start to think about a future. I’m optimistic. I mean part of me thinks that, you know, “I’ve come through it all so I must have some, you know, some strength”. 

There was always that fear, and for ages and ages after I could not go to sleep without putting my hands on my tummy to make sure there wasn’t a lump there. And I used to think, “I’m not going to do it tonight. I’m not going to do it. It’s ridiculous, you’ve got to get over this”. But I couldn’t. I could not go to sleep for ages and ages, and then suddenly I realised I hadn’t done it. So I’d obviously sort of got through that, but it was stupid, and for ages after, you know, you sort of think every little pain, you sort of think, “Oh, is this something that I need to worry about?” And, you know, I still think that at the back of your mind, whenever there’s something wrong, you do wonder, although, touch wood, you know, I feel great and I have been great and, but there’s never a day goes by without you don’t think how lucky you are. It’s a leveller. 

 

 

I’m going to stay well. Obviously as you get older you realise that chances are you’re going to end up with some problems, but, no, I have very optimistic future, outlook for my future. I feel well. I’m fairly active. I enjoy life. Oddly enough, I do enjoy my work. I look after a horse a couple of nights a week and go and see him and muck out and he’s not very well but, it’s fine. Enjoy my family, my nephews and nieces and doing things and going places and, yeah, very, very optimistic.

 

Sometimes I do, yes, if I have got some twinges in places that I think either shouldn’t be there or are related to scars or tissue that I think is where they had operations before, I’ll think, “Is it coming back? Isn’t it?” I’ll just sort of monitor it for a while. I’ll keep an eye on it. If it gets painful, or if it gets bigger, or if it’s something that’s there after a couple of weeks and I am still noticing it. Because often these things will come along for a day or two and then you forget about it, and then you think, “Oh, well, that’s wasn’t that, was it. I’ve obviously overdone it or whatever”. If it’s still there after a week or two weeks and I’m moaning about it and my partner says, “Are you still moaning about that? You said that about a week ago about this, that and the other”. Then I think, “Perhaps I ought to go and see somebody”. 

 

And that’s when I’ll go and see somebody about it, and invariably when I’ve been, luckily, so far it’s just turned out to be nothing, or they’ve just said, you know, “It’s most probably a bit of scar tissue”. You know, it does move about apparently, or it can, you know, as you change, you know, as you get older your body shape changes etcetera, it could be just it moving about. If it’s in the way they’re quite happy to open me up and move it about but I think I’d rather just leave it and just get on with it really. So no, apart from that, that’s the only time I tend to think about it. I don’t tend to on a day-to-day basis. It doesn’t worry me from that point of view.

 

Not at all, I'm a fatalist, an absolute and complete fatalist. Once, when I was a lot younger I was a flight attendant and I was strapped into my jump seat of that aircraft hurtling down the run way five times a day, and every time I used to think, oh this might be my last time. And that's the way that I thought about this, because I've had a few friends who've had cancers of different kinds, and some who are still with us and some who are not, and to be perfectly honest, truly I don't believe it should or could affect the way that you live your life. Because if you're having it treated and it's being treatment as in my case and everything has gone fine, you know you're clear, then you've just got to get on and live, you can't think this might happen again. If it does then it does, and that's fate. But you can't, I don't think, change the way that you lead your life because of this. I feel very strongly about that.

 

To me.

 

 

No, I mean I’ve got to die of something and I haven’t got the slightest idea what because, you know, God does not send you a first class letter telling you what of and when. And I know perfectly well it could be cancer, people have cancer coming back after twenty-five years, but after all, I’m going to be seventy-six next week. I can’t complain. I mean I was brought up that after you’d achieved three score years and ten the departure lounge was in sight. Don’t you think?

 

 

I don’t know if it was expected but it’s a biblical reference, three score years and ten. That’s considered to be a good age and, if your maths are up to anything, you’ll know that’s seventy. Well I’m seventy-six, so I think I’ve been very lucky.

 

Well I think a lot, you hear a lot of stories and how it affects you and it changes your life, but I think in my case I don't think it has. I think, you know, I don't think it's actually, I think until I actually finish and get discharged, I still think that there's a tendency that it might come back, and I think until I actually discharge myself I'm still going to think along those lines. I don't think I can, I can't get it out of my mind that it might come back.

 

 

It does yeah. And I know from all the reading and research that I've done that it shouldn't. I know that I'm sort of cured, basically, and I know that the chances of it coming back are minuscule. But I suppose I'm just, I've just always got that nagging feeling that it might.

 

I suppose I feel that's the way I'll die.

 

 

Mm, sometimes I seem to have a phase, a lot of very, very bad headaches and migraines, and I'll try and talk to [son’s name] sometimes, he's the one that didn't want to know about it, and now with all this sort of toilet trouble I sort of say to him, "I don't know if I'm going to have a brain tumour and die or if I'll have bowel cancer or stomach cancer", but I said, "For goodness sake get them to open my head up and see what's giving me these headaches when I'm gone". He said, "Oh Mum", and he won’t talk to me, he gets cross with me. But I just sometimes need to talk to people about how I feel. I actually want to say, "Look, I feel really poorly and I don't know what's happening", but I'm sure I probably will die of cancer. That's just how I feel. I'm not being maudlin or anything, it's just that I think once you've got it, it's something my Father said years and years ago, you know, he'd watched so many old friends of his die and pop off, and he said something and it always stuck in my mind. He said, "Once you've got it mate you've always got it". And I suppose in the back of my mind I feel that it could easily come back in a different bit of me. And I think that's why I won't go to the doctor now. And I know my husband and all my family would all go, "Oh you've got to go, we don't want to lose you”, and that, but there comes a time you've had enough of pulling about, and I couldn't go through anything like the radiotherapy planning again. And this time, you know, I've got the greatest respect for doctors and nurses, and even if I work in the NHS, I would go leary with them this time if they were horrible to me.

 

 

It just frightens me what they might find.

 

 

Mm, and oh I don't know it's all very bizarre. I'm sort of muddled about it, I think if I've got it I've got it, it's going to kill me alright, but it's not just a question of going to the doctor and showing the doctor, they want to do things then and send you off for tests and stick tubes in places, no.

 

 

If it was simply going to the doctor and they said, "Oh here's a tablet or a bottle of cream”, or something, that would be fine, great, brilliant. But, you know, it’s a bit private sometimes, and I know there are people that go to the doctor and start stripping off at the drop of a hat, and things you read about, but not all of us can do that.

 

You value it certainly. You feel more prepared to die, I think. I’ve, you know, it gives you a feeling of life and death. When you don’t have anything like that you’re thinking of life, death doesn’t really play much part. You know it happens but you don’t really want to think about it. I don’t mind thinking about it now, so that’s a positive thing, and I can cope with it when other people die, better than I could. It’s always upsetting of course but I think this is the natural thing and maybe there’s something afterwards. Who knows? And I think cancer has made me feel that.

 

Right. Since I’ve celebrated my five year anniversary, it seems to have been a milestone, and since then people have been coming to visit me more. The GP has started coming to the house just to call in to see how I am because she is concerned about the stage that I have reached. And the Macmillan nurses and the oncologist, they are all concerned about the stage I have reached as well. And in fact a few days ago I had to go onto the ward, I was captured by the oncologist, she wouldn’t let me go home because I was in denial about the pain that I was in. And so I was taken on the ward for several days and I’ve started on a regimen of morphine. So with this regimen of morphine comes a lot of mental pictures because people immediately think, ‘Right, you’re on morphine you must be getting nearer to the end’, I mean although it’s just being used as a pain control it’s obvious from the nurses reaction that that’s how they are treating me. But the only way I can treat it is by saying, ‘Okay I’ll let the morphine do the job that it’s got to do, but my job is different, my job is trying to leave memories for the rest of the family’.

 

We had the party and that was absolutely wonderful, it was on a beautiful day and lots of people were here and we had wonderful food and wonderful conversations, and as I pointed out on the day, this day was, I didn’t see why they should have a party at my funeral and I can’t see what’s going on, so it was a pre-funeral party that we could all enjoy and all enjoy each other’s company, so when the time does come for me to have a funeral, people will know each other and be able to talk to each other, and they will be able to have that memory. So that to me will be lovely that they have got that memory. 

 

And the other thing that I am trying to do is build memories in the garden, because nothing else needs doing to the house, so if we can build memories in little corners and plant different things in the garden, and people have got a birthday coming up, so they want to plant plants, we have had it designed, so they want to come and put plants in, so it becomes everybody’s little bit of space, so that’s at home I’m doing that. And also I want to go to places, go to places with different people in the family, go away and have special weekends, buy little bits to bring back to remind people of really, really nice times.

 

So this summer it’s a building memories summer, and I am looking forward to it, you know, I want to do as much as possible and cram in as many things as possible, because I feel over the last year, well, you know, areas have been neglected and peoples lives will go on when I’m not here.