Caring for someone with a terminal illness

So the following week he was supposed to see the GP anyway and that morning he was going to work at the bowls club so he drove down and I drove down too. I walked down to meet him afterwards and I got in the car with him and, my husband was the sort of person who could drive anything anywhere. We got in the car. We came out of the bowl’s club, bowl’s club car park and he turned the wrong way, which really threw him. Going round a roundabout, to sort himself out, he nearly hit the gate post. We, eventually, we got to the, we were near the complex where the doctors is and we missed that turning so he turned into the station car park, once again, narrowly missing the entrance. We came back along the road to the mini-roundabout and if I hadn’t shouted he would have hit the person on the left hand side, who fair enough, should have slowed down, but wasn’t giving way. When we got into the car park for the doctors, which is part of the shopping centre next to Halfords there were no spaces so he parked on the zig zags, where which is used for the ambulances and fire engines and I said, “Darling, you can’t park there.” I said, “I tell you what, go in a disabled space and I’ll keep an eye out.” So he pulled into the middle of two disabled spaces and he parked diagonally across them and couldn’t see anything wrong with the way he’d parked.

So went into the doctors and he spoke to her and I explained what had happened and he explained that he was, he didn’t have headaches but he had times when his head didn’t feel right and he just, he just basically didn’t feel himself. And he and I think he was having trouble with distances and things like that.

Anyway, she said that she would refer him to a neurologist. I asked her for a copy of the letter and she said, “No. She was going to do a form. Well, I knew immediately it was the local, it was the cancer form for the local network so I asked her this, using the initials so that Donald wouldn’t twig, and she agreed that’s what it was.

So she, we came home. He immediately fell asleep on the couch in the conservatory and slept for a couple of hours and, in the meantime, I rang my stepdaughter to say, “Look. I think this, think he may have brain tumour.” And I said, “I think perhaps I need to tell him. What do you think?” So we agreed that Donald always liked to know what was going on so when he woke up, I explained, as gently as possible, that this is probably what they were going to test him for and he was all right.
 

And then, eventually, he got transferred to a regional hospital, where he was treated, and that was the first time, and this so this is this is three and a half weeks after I brought him home and almost a week since he’d been in hospital, we eventually, get told that he’s got leukaemia.

So we, we had that horrible time right at the start. We knew something was wrong. It was obviously serious. He was getting worse. He was very weak by the end, he could hardly stand up on his own, you know, as a as a very fit and active twenty year old. And, and people were kind of skirting around it but they wouldn’t actually say anything, because they didn’t know for certain. And, and so, you know, that wasn’t that wasn’t good and I think certainly, from my point of view, this is because cancer is so rare in young people, it, it takes far too long to diagnose it really and we experienced that.
 

Because I had an iffy relationship with my mum, not very close and when she was eighty she had this birthday party, first one she’s ever had. And a week later went into hospital and when she came out, they hadn’t done the operation and I was with her and the Macmillan, not the Macmillan unit. I was with her at the hospital when they told her that she would die of it. It was terminal cancer. I was as shocked as my mum. Well I say that, I probably wasn’t as shocked as my mum.

But she was very shaken, very quiet and I thought, “Don’t want to deal with this.” Anyway, we went to my sister’s and I had to tell my sister, which was the hardest thing because we’re both crying, but it was shock more than anything because neither of us were that close to her, although she was an okay mum but circumstances.

So but we thought it was in the future so we all got used to it and my mum lived alone and has lots of friends. She’s quite social. She had lots of friends and she seemed all okay with it. She was pretty stoic, but I felt the need to see her every day and my sister didn’t, as a matter of, my sister’s got a disability. So I went to see her, called in there every day and it wasn’t a chore because she’s quite a positive person but, obviously, she was brave and, except in the night time when she was on her own.
 

I think probably Fiona was a bit stronger that I was at that point. I found that very difficult. I don’t know if that’s because perhaps she had a, a bit more of an inkling that there was something fairly major going on inside. And whether or not I felt, well I just didn’t realise how major that might have been. I found that difficult. But, I remember at the time being very upset.

I’m sure. How was the news delivered?

Fairly matter of fact. The consultant for her liver, was the person who passed the information to us. And I think it was delivered in, in quite the right way. It was fairly straight forward really. We went to a room to discuss what the findings were. And didn’t beat around the bush, went fairly quickly to what it was. Mentioned words, which needed clarification like a growth, you’re not quite sure what that means. And then palliative care came up and that was a word I didn’t understand.

When you said he explained what the growth meant, what did he say?

I… well I think at that point they hadn’t actually diagnosed what it was in terms of a cancer. But I think cancer was what he was telling us. And but… the precise type of cancer source and all of those things, they still needed to do tests on. But in a very short time, we were talking to the doctor, we were put into the picture that we were in a very bad position.
 

We weren’t offered any treatment options because nobody quite knew, until all the tests were done, what that was going to bring. So it was about a month and a half of puzzlement and, and everything was unclear and I’m a very, I have to know person, so that I can deal. If I don’t know I freak and I didn’t know. So there was quite a bit of freaking on my part going on and, at the same time, trying to realise that I wasn’t helping the situation, David or anything else.

It was very difficult because as a disease itself, if it had been a solid tumour somewhere you can visualise excising it and dealing with it and, in apostrophes, curing it but to be told that what David had was treatable but not curable you you’ve got this long distant future in front of you, which is grossly unknown, and I don’t deal well with the unknown. I deal with knowing what I’m doing, where I’m going. I don’t deal well if things are unknown and I found me a bit crumbly really because it wasn’t obvious what was going to happen or how we were going to deal with what was going to happen, both medically and domestically, how that was going to pan out either. And, particularly, with the state we found ourselves in, in the house as well, which hadn’t even been started let alone finished. All of that just fell into a big hole and I couldn’t work out what was going to happen first or how it was going to happen and that was confusing in the extreme.

I think that was probably, even more confounded by the fact that the medical experts, they didn’t know either. So they couldn’t give you any reassurance that if they did that, then that would happen and if they did something else, then that would happen, because they didn’t know either. So that was even more, for me, that was even more confusing and I’m not very patient. I’m not a patient patient. David’s very patient but I’m not a patient patient. And I was getting impatient with them, which is why I spent such a long time on line trying to fathom my way through it myself. So that was immediately, for me, a huge problem because I couldn’t, not being in control, I couldn’t make it better. I couldn’t get anybody else to say that they were going to make it better either and that was very hard, very, very hard indeed all round.
 

It felt to me like carrying a bomb. It felt to me like carrying a bomb that if I opened my mouth would pull the pin, you know. And it was, you know as though we were, as though I was sort of cradling this news.

Who did you feel you wanted to tell first? Who?

Oh well I didn’t want to tell anyone. I mean I, it was a case of we were going to have to tell, my parents were here, they’d come to look after the children. While we went to the appointment. Or I think it was just my mum actually and, so we knew that we had to tell them. And Karen’s family. But it was a case of have, we had to, you know. We, we didn’t want to tell anyone. Because we knew how, we knew what a shock it was for us. Or this is how I felt at least that it was such a shock that I didn’t want to burden anyone with that.
 

I went in one day and there was a nurse. She was a she was a proper, what I would call a Sloane Ranger, beautifully spoken, and she came bustling up to me and said, she’d been talking to Donald and she’d been trying to get him to look on the bright side and she said… I think he we must have had the results of the biopsy by then, pretty much, but we were waiting to speak to the neurologist about it because, she said, “He should think positively. He should, he might be able to go home. It wasn’t a bad diagnosis.” And I looked at her and she said, “Well, actually.” She said, “It’s not a wonderful diagnosis.” She said, “But, you know, with a bit of positive thinking he might be able to go home and get some radiotherapy and it’d give him a bit longer.” And I just looked at her absolutely amazed because that wasn’t what I’d been told.

So then I was talking to Donald and sort of trying to look on the bright side but he wasn’t having any of it and, eventually, we saw the neurologist and he said he’d got the histology back and it was a high grade astrocytoma. When I said, how it had it been missed the first time, he said it presented backwards. Normally, apparently, the core comes first and then the shading, the nucleus round it but Donald had present differently and also, astrocytomas are more prevalent in children. So that was why they’d missed it.

So then we had this case conference, and this conversation about, you know, whether he should be allowed to die or whether it had, and I said, “Look. Donald’s had enough.” I said, “And it’s not because he’s depressed and it’s not because he’s cross and he’s not because he’s given up. I said we’ve always said, right from the very beginning both of us that, if it’s inevitable then let’s get it over with.” So the neurologist then acquiesced that Donald would be left alone and to get palliative care in and he could have what he wanted, which is a quiet and reasonably dignified death.
 

It was a really strange sort of six months, you know, because, you know, we were convinced and at the same time we were hoping, you know, and, and it was, we were planning what, what on earth were we going to do and how long might it take you know and the… what we’d read suggesting anything between eighteen months and ten years possibly. So what was going to happen, how would we deal with it?

And I got in touch with a physician who I knew that I used to work with because I used to work in a complementary health clinic, who specialised in life threatening diseases. And he came back to us and made some suggestions.

But I think it was very clear… both to Di and to myself that we didn’t really want to go down that route. We didn’t really want to anxiously fight the whole thing you know. You know, MND the outcome was pretty certain whatever you did. And, I mean, I guess we both held out for the possibility of some unusual cure or, or prolongation of the disease. But we both realised that, you know, that it was terminal.
 

When we look, you look back at [friend’s name]’s illness, initially did you expect, what did you expect to happen after her initial diagnosis?

I expected her to have the chemo, as people do, and improve and progress.

I was going to move back to my place, fifteen mile away and see her at weekends. And she was she was going to go back to work as a receptionist, a wages clerk and continue her old life and I’d have my life and meet up at weekends, be friends and partners.

So did you view caring just as an interlude where you’d be helping her over a difficult time?

Basically, yes. Initially, yes, I suppose. Just wanted her to get better and I can get her better.
And, I was very optimistic and confident.
 

And then he had hundreds of things that went wrong. His lungs kept collapsing. I was, at one point, he was in hospital and he was so ill that I thought he was going to die that day. I took him to hospital and he was being sick constantly. He looked like he was dying and I said to the doctor at the time, “He’s going to die isn’t he?” And the doctor said, “I don’t know.” And it was just the realist thing anybody had said to me because we’d always, we’d constantly been told, “Hold on, hold out hope. You can survive it. You can survive it.” And this doctor said, “I don’t know.” And, although it wasn’t conclusive, it wasn’t giving me an answer, it was real and so, at that point, I spoke to my dad and said, “Do you think you’re going to die?” And he said, “Yeah, I won’t get through this.”


And that was such a difficult question to ask and I was really nervous about asking it and a bit sort of embarrassed and, oh, you know, and when he said, “Yes.” I thought, “Oh, right well, if he thinks he’s going to die then, you know, that’s really it.”
 

Interestingly, as we kind of went through the journey I actually, came to the conclusion that in some ways, that was better than having cancer because we knew absolutely what we were facing. We knew that there was no option. That actually, you know, we were facing certain death with no treatment at all. Whereas if he’d had cancer, we’d have been striving constantly for the next treatment and the next treatment and the next treatment no matter how narrow the chances were of a cure, we would still have been striving for, for treatment but, actually, the thing that it gave us was this incredible honesty between us in our communication because we had to be honest because it was, you know, we had to say the things that needed to be said because we knew that there would come a time when we couldn’t say them.