So the doctor said that he would do the paperwork and we assumed he’d be back. So we sat there for an hour and a half. We, we rang my stepdaughter, who was on her way, said, don’t come in, darling. Dad’s died. Come here. Come to my house and we’ll be there as soon as we can And after about an hour and a half my stepson went to see what was happening and apparently, we could have gone at any time, that we thought we were waiting for the certificate, not the death certificate not the death certificate but the certificate to say that he’d died that we needed to get the registration. But, apparently, they said, No, the bereavement They get they then gave us an hour and a half, they gave me a leaflet about the bereavement office and said that they would be in touch and then we’d have to go back in to get the certificate to take to the registrar and because Donald had died out of [county] we had to go to [town] to register the death.

I’d been home about twenty minutes when the bereavement office rang me to say they had it. So I said, Well, we’ll have to come in tomorrow and do this And that’s what we did. End of story.

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 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 but before we could do this, because the surgical staff were still hanging on to him and weren’t ready to give him up and wanted him to have radiotherapy and they had to ask, Donald had to agree that he didn’t want it. They came and all sat round his bed and asked him the question and the first time they didn’t get the answer they wanted, because he was confused sometimes. So they tried again and this time he was very, very definite he, he said he wanted to finish it and, and so it was agreed that he could be moved to a local hospice but, because once again it was Friday, they couldn’t do anything over the weekend. So they got all the paperwork in place and he was going to go in Monday morning. Then there was a hiccup because one of the oncologists at the hospice had said that Donald didn’t sound as if he was ill enough.

So our neurologist re-presented the case. It was agreed that he would go. Saturday, he was fairly, he was fairly quiet because the palliative, no, palliative care hadn’t taken him on because he was going to go to the hospice, that’s right. But he could have, they were advising about his medication so they’d got the medication a bit better and he, he was fairly quiet and reasonably peaceful, wouldn’t eat or anything. And we had the odd raving, when he was cross with us and he couldn’t understand why he was still there and why weren’t we helping him.

And then Sunday, he wasn’t too bad either. In fact, he was he fell asleep on Sunday and so I left early because he was he was asleep and they were going to give him sleeping tablets so he’d go through the night and then the phone went at about ten to twelve. I was in bed and one of the nurses said that his breathing, he was having difficulty with his breathing and his condition was deteriorating and I said, Do you want me to come in And she said, Well, I can’t, I can’t say that So I said, Well, okay then. I’ll be in a little while So I rang my stepchildren to say that, I will go myself And I was getting ready and at first, the stepson rang me and said, No, stay there I’m coming to get you And then my stepdaughter rang and said she would meet us at the hospital. So we got there and we sat with him all night and his breathing was really label laboured but he did rally round and he got through the night.

Come Monday morning, we were still there. The neurologist’s registrar, new registrar, came to see us and they’d said that he was too ill to move. They could move him but it would be very traumatic so I said, No, no, let’s not. Let’s just leave him where he is So they moved him into a side-ward. Palliative care were alerted. They came to see us. They were really lovely. They put him on something called the Liverpool package, which meant they would stop all unnecessary treatm

We were still waiting for the biopsy. It was set for the Tuesday. When we got in Tuesday afternoon, it hadn’t happened. Donald was attached to a nebuliser. He had a very, very bad chest infection and there was some problem with his heart rhythms. In fact, they were so worried that they called us in to a side room, the family, my step son was there and I was and my sister-law, and they asked us whether or not, in the event of Donald deteriorating, did he want him to be resuscitated. So we said, we’d thought about it, and we said no, we didn’t in view of the brain tumour.

You, you mentioned about your joint decision with Donald not to resuscitate?

Yeah.

Had you discussed that previously? Was that something that you had talked about?

I knew what he, I knew what he would want. We were we were always great Holby City and Casualty watchers and we’d see items on the news and we’d always said that if either of us had anything terminal then we didn’t want to be, we didn’t want to linger.

You mentioned a trip to Switzerland. Had you actually, I know you mentioned it in passing, alluded to the assisted deaths in Switzerland, had there been thoughts about that at the time?

Well, Donald said that, we used to watch Holby City and there was a storyline there and, and he said to me he wanted to go to Switzerland and, in actual fact, if we’d had, if the prognosis hadn’t been so late, if they hadn’t misdiagnosed the tumour, yes, then we would have considered it. Donald probably would have wanted to and I wouldn’t had, well, I say I wouldn’t have had any objection. Obviously, I wanted him to live but if he wasn’t going to live I wanted him to die with dignity. So yes, if we could have done that I would have been prepared to do that and the, and the kids, definitely, were a hundred per cent with me in that. And, in fact, I’m going to make a will I’m going to make a living will so that the same thing doesn’t happen to me.

Donald was having difficulty, he was obviously getting fluid on his lungs and he was, they had to drain his lungs a couple of times. That had happened the night before but this time it happened once and the charge nurse came and said there was something they could give him that would stop that, Was that okay So they did that and then he had a peaceful night and at eight o’clock, ten to eight, probably, about ten to eight on the Thursday morning, which is the 19th November, I said to my stepson, Right. I’m just going to go and get us a decent coffee and move the car And he said, Do you want me to come with you I said, No, no, no. Stay with, with him. You know how difficult he is

Well, he must have died as I closed the door and my stepson tried to ring me but the ceilings are so low in that hospital that I couldn’t get a signal. So when I came back, the doctor was sort of round him and my stepson son said to me, he said, I’m sorry, Maggie. He’s gone And I looked at him and I said, How could you do that to me [laughs] The poor, the registrar looked absolutely nonplussed and, and my stepson said, No, no. it’s okay He said, it’s just, it’s just exactly, [laughs] it’s just exactly what he would have done I’ll teach her to go and get a coffee Died when I was out of the room.

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.

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 saidI 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.

So how did you, because, obviously, you, your world changed.

Yeah.

You took, did you say you took time off work? How did you find dealing with his illness and caring for him?

It, it was very difficult. I mean the fact that he, it soon became obvious that you couldn’t leave him for any length of time on his own because he got very confused. Now, I’ve got a very small kitchen and one day someone had popped in to see him and they couldn’t find the fridge to find the milk and we I gave notice, I gave them three months’ notice at work in September because it was obvious that he was, and they were very grateful that I wasn’t going to go straight away and then about a month into this, I, one day I’d arrange for Donald, someone was going to come and pick him up at eleven and take him to a friend’s house. And as I was leaving he just got so confused that I rang my friend and said, Look. Can I bring him now And when I got into work I said, Look. I’m sorry. I can’t do this anymore. I’m going to have to finish today. I’m really sorry

And once I was here he wasn’t so bad but he would wake up in the middle of the night, there was, he would wake up in the middle of the night and he wouldn’t know where he was. He wouldn’t know how to get out of bed. He wouldn’t know where the bathroom was.