Living with and beyond cancer

 

Yeah, my son didn’t want to know. He’s twenty- seven now. He was twenty-one, and I told everybody about it the first day I was diagnosed, and I told my son when I came back from clinic, I said, “I’ve got…”, you know, “Everything’s all right”. He said, “Okay”. But he said, “I don’t want to think about… I don’t want to talk about it”. And I said, “Fine”. And he’d had a long-term virus from being eighteen, and his way of dealing with it, he’s all right now, but his way of dealing with it was, “Don’t talk about it, don’t think about it”. So he did the same with my illness. The girls were different. The eldest one lives in America. She’s had a cyst removed from her breast. She’s very aware of breast cancer. So she was very concerned and it was hard for her because she was so far away and we went to visit her as soon as I’d been diagnosed, before I had the treatment, we went to visit and spent a fortnight with her. I think she’s found it very hard being so far away but she’s not talked to me a lot about it. 

 

I’m sure she’s talked about it to her friends and her husband rather than me. Although we’ve talked obviously, on the phone a lot, and we are very close, but I don’t, I’ve kept her informed all the way but not talked about the outcome. The younger one, the middle one, had her first baby the summer that I was diagnosed. She’s now expecting a fourth, so despite the fact she lives fifty miles away, we see each other every week. I go every week and we spend a lot of time together, obviously, she’s been pregnant and had babies, we’ve brought the children up together, so we’ve probably become close. We’re a lot alike, so we’d have become close anyway but, as I say, she lives fifty miles away but she came to visit me a lot when I first had the operation. I think she was very frightened, having had her first baby and then suddenly I was ill, and she came to visit me in hospital, and even though I was only in a few days, she came twice. 

 

And then she just supported me tremendously, and I think it was just, no, it wasn’t just fear of losing me, but I think just when she found she needed me most she thought she might lose me. And I think that’s probably brought us close, but we might have been close together anyway, closer anyway because we both love little children and there is a lot of little children about. And but, yes, it has brought me closer, and closer to my husband as well, although he’s like my son. He doesn’t like to talk about it but he had to help me a lot. He supported me a lot. 

When I first was diagnosed I felt I needed to read everything that was ever published about ovarian cancer and cancer in general and talk in chat-rooms to people and just immerse myself in finding out about cancer and peoples’ responses to it. But I found after the first couple of years I had the opposite reaction. I thought I knew intellectually all I needed to know and that my journey from there had to be more spiritual and finding what resources I had inside myself to live with this, because I don’t think about it. I don’t think about dying from it. I just think it’s a challenge to learn to live with it. And I would have to say that I think it has enriched my life, having cancer. And I know it has enriched my family’s lives; they’ve said that to me over and over again. Because all of us now just enjoy every day, every little thing from having that first cup of tea in the morning, to talking on the telephone, to each other, just everything becomes so precious when you’ve come so close to losing it. And it has opened our eyes, my whole family and myself, to how wonderful life is and how lucky we are to have each other. And it has also helped us put things in perspective; we say we don’t sweat the little stuff anymore. You realise what’s important and what isn’t, and because we see each day as a gift then we make sure that we don’t squander it. So it has been an enriching experience for us all, I think. 

 

But as the years have gone on they’ve realised that, as a family, what we have to do is just have a lot of fun together, a lot of good times, create lots of good memories. Not avoid the future; we do talk about death and they have seen me at death’s door. So we don’t avoid it but we live in the moment, and my son who’s still in Canada comes over twice a year for nice long periods, and we talk a lot on the phone. So I think the cancer experience has made us very close as a family, or kept us close when perhaps you may expect your children to have flown away a little bit more. Mine have flown but they keep contact and they’re very careful to do that. So I think we appreciate each other a lot. So…

 

 

No I mean I think that, one should say that probably we are closer, that we somehow care for each other more. I would say it’s strengthened, particularly since [name of wife] had breast cancer as well. That we both are very close and think about each other a lot, and on the whole take great care of each other. And we have our little spats and we get on each others’ nerves here and there, but I think on the whole we have a very, very positive relationship. And probably that has been helped in a way by, you know, running the gauntlet, you know. It does make you more sensitive and more caring. Yeah. I think that a relationship works if you put more than fifty percent in, so each person should put sixty percent in, it makes a hundred and twenty, you know, that’s nice. It’s not a matter of counting up, I’ve done my share, you do your share, you know, it’s throwing things in all the time that makes it work well, yeah.

I think the trouble with cancer is it has got connotations for people, and I think it’s one of those diseases that generally people don’t think you’ll get over. It’s still there and that is always in the back of your mind that it’s there niggling away. And it’s my family, I think it has had more of an impact on than me in that sense. They still, I’m sure, think it’s still there. They don’t totally relax. It seems to come up in conversations when you least expect it. And that, I don’t find it hard but it does sort of bring it back and we can’t get over it. And I think it does shape a lot of our lives now, the fact that we’ve taken up skiing. My husband is determined to do everything in case, you know, I die. And he will often sort of talk about if I died what would happen to the money and things like that, and what he would do, and what he wouldn’t do, in a way he would never have done before. And in some ways I suppose it’s good, you know, accept that one of us will die eventually, but it’s me that’s really constantly saying, “But I’m not going anywhere”. And I think nobody really in the family expects me to live a long life. When we talk about retirement you think, “Well, will I get five years? Will I get…?” And I suppose it does affect my thinking but I like to think it doesn’t, and I’m determined that it isn’t going to have a long-term impact. 

 

But I think there’s always this nagging doubt in their mind that something is happening, and if I say I’m not well you can see them looking and they can’t, the mention of cancer seems to come up fairly regularly in their conversations and my husband’s conversations when I was ill, is a sort of favourite thing, not in a negative way, I just think it’s always there in their heads now when I had cancer. It’s not that I go on about it, it’s them that will always bring it up. 

 

For me, from my point of view it really, and a lot of people were quite surprised by this, to me it’s a non-event other than that time when I felt lonely when I was going in for my transplants. I don’t want to sound blasé about it but I just, to me it’s just another problem, get on with it, crack on with it. My personality is, I’m sure you can tell from how I’m talking, is one where I just' I see something, what needs to be done? Let’s do it, let’s do that then, get on and do it, right that’s now done, what else do I need to do? Don’t need to do anything else, okay fine. I just get on and do something. 

 

And I’m really, at no stage was I scared for me. I was terrified at times about the prospect, you know, the effect it had on my family. And even today, you know, it’s six years on nearly, and I still occasionally sort of think back and think, “What have I done to my daughter? What have I done to my wife?” We’ve only been married eight years; for six of them I’ve been putting her through all sorts of nonsense. So that’s the biggest impact, and it did affect my wife, you know, it has affected her definitely. But I can see a change now for the better. I’ve returned to flying and that really has helped her in her sort of recovery from the whole thing. She sees that I’m now doing something, back doing what I love doing, which is flying. I’m well, I’ve still got a long way to go to get properly better, because having a bone marrow transplant the immune system’s, they said, you know, for the next five years it’s going to be a case of building and getting it right again, and that will take time before it’s fully sorted. Well I don’t think it will ever fully function properly but it’ll be a lot, you know, it’ll be a lot better than it is now. So there’s still a bit of physical repairing to be done. 

 

But yeah, it did affect my wife, and that can’t, that really can’t be, I mean that’s something that is really not considered to a great degree in the whole process, is the impact on those really close to you. And it really is only my daughter and my wife where this really heavy impact, because even your parents, even my parents and my wife’s parents, we sat down at length, talked about this, my wife and I, you see nobody, not even my closest friends really know what we’ve been through, because when we saw our friends in between treatments, and saw our family in between treatments, that’s the only time we saw them, I was in between treatment and actually okay, and feeling okay. When I was really unwell and poorly with treatment we were like hermits, we just stuck ourselves away and get on with it. 

 

And my wife was helping me and my daughter too, and every, I used to think about it when people said “Oh you’re looking so well”, you know, “You’re looking much better, you’ve got no hair but you’re looking well”, and I’d say, “Yeah well that’s right. The reason you’re seeing me is because I feel okay at the moment. When I’m not well, not feeling great, I’m not going to be around”. And that used to sort of bring a little wry smile to my face when I saw my friends and family, because they never really, nobody outside of my wife and my daughter knew the real impact of what was going on for any of us.

 

Well, we are more of a cancer family than anything else, but there was only one person that we knew that had died in their 50s, everybody else had gone on to their 80s, 70s and 80s. But it is a great sorrow I felt when my sister was diagnosed last summer at the age of 58 with colon cancer. I think it is extremely unfortunate that it’s happened to us both so comparatively young. And in fact it had progressed and already she had spots on her liver, so it’s more shocking, and in fact I felt more stressed at her cancer than I had with my own. I think possibly because you’ve got resources in yourself to buoy yourself up, but you feel very helpless in the face of other people.

 

But, touch wood, nothing so far has appeared in the children. They might possibly be monitored, it’s up to them, but my sister was quite keen to have a genetic test done and that’s in train at the moment. We don’t know whether they’re going to follow it up or not, because when I first raised it at a clinic they said they were actually more concerned with people who got it at a younger age than we had. People who are under 50, possibly even under 40. So it’s up to them. 

 

My sister who lives in [city], they seem to be extremely keen on their research and they actually followed her up with the ovarian thing. She had, what are they called? The scans that you have when you have a child? 

 

 

Ultrasound, yes. She had ultrasound scans every so often, and although she never complained of it being stressful, she did mention that they’d picked up cysts which then disappeared. And I’m really not sure about this constant monitoring. I had started having mammograms myself. I felt the lump in between the three years that you have it. I do know a couple of friends who are eternally grateful that they had mammograms because they were caught, and one fortunately is as cured as you can ever be, and she’s still going strong after 15 years. So, you know, it worked for her. My sister was in fact offered a laparoscopy, or they wanted to do a laparoscopy, because there was one particular big cyst, but because of my little accident she refused and that big cyst also disappeared.

 

 

Yes, I had it yesterday. 

 

 

So they’re freezing it. As my sister said, for some reason, I don’t understand why, but I had to have the test before she did. So it actually sounds as though I instigated the whole thing. And the lady who saw me said, you know, she was going to see her consultant next Tuesday and they’d decide themselves what to do, whether to carry it forward or not. But my sister will presumably have hers and, you know, what she does with it and what her children do, I asked my children beforehand because it was their reactions that I was keen to know, and they seemed quite positive about it, although my son told me yesterday he didn’t think that he wanted to be followed up, on further reflection. But that’s totally up to them.