Yeah I mean the nurses were there so they, they did that for me and then I think they phoned the GP straight away. And at some point she must have come round to officially declare Karen as dead and to fill in I think a bit of paperwork at that time. Not that I had to be involved in any of that but she needed to come in and sort of ascertain that she was dead. And which, I didn’t mind, I knew that they’d have to do that.

And then did you have to go and register her death the next day or, did you have to go somewhere?

Well you’re given a time period of maybe two weeks, that was that was pretty awful I must admit because, well there’s a whole new story of doing that because it’s at the same registry office down the road that we registered our marriage in.

And the woman dealing with me, I went in with my sister and the woman dealing with me just was socially inept and she was she was just utterly clueless. I had a certificate with me signed by the doctor, the original certificate and the woman said that she would need to take that. And I wanted to keep it. Because it was symbolic, this was my wife’s death.

And she said, Well you’ll get a copy blah, blah, blah and I you know and I was saying, Well no, I don’t want, I want, you know I’d like this one

And she’d already just been very officious; I mean the whole thing was just very officious. You know considering I was registering my wife’s death, there was less than, well I don’t know it was only days previously, their attitude was you know the same as when we were, register your marriage.

They were very officious about this being a very legal thing and just inhuman. I mean I was gobsmacked. And, and it started to upset and annoy me, you know being a bloke, being upset actually made me frustrated.

So I think I was already feeling very sort of just awful about the whole thing. And then she started arguing with me about whether I could keep this thing, and I was saying, Well could you do a photocopy for me

And the way that she dealt with it was just very abrupt and very defensive. I mean she, you know, I don’t want to get too psychological but she was so defensive that she got aggressive with me about, This isn’t your property and blah, blah, blah. And it was the most awful, awful exchange I’ve ever had.

Given the circumstances and we didn’t have a sort of stand-up row, I was just sort of being assertive, but it was just very, very disappointing. So, they did send me, I never filled it in but I wish I had, they sent a questionnaire a few weeks later about, How was your experience

Oh.

And, I really, if I’d had more time I really could, would have liked to have spelt out to them how they need to do some training. You know. But anyway.

She was in our bed, so basically I was sort of spending half the time in a spare room, just to make sure that I got some, some decent sleep. And she was given a special sort of mattress to sit on because it got to the point where she was on a lot of morphine for the pain. And spending so much time in bed obviously is, is bad for you because you get these sore points. So she was on a special mattress.

And, and then gradually she got more and more ill. Then we got a hospital bed brought in which you know, for, which had an electronic lifting mechanism. So that they could, because her positioning was painful. She still had a very distended stomach, but they couldn’t really drain it anymore.

So there was a lot of discomfort and also the nurses were struggling to sort of deal with her. So gradually it moved from the bedroom to the spare room to the hospital bed, and then eventually downstairs, in the, in the front room on the hospital bed.

So what did you tell the children all this time?

They, our son was only four months old when she was diagnosed.

So he was largely unaware. My daughter was three, and we told her that it was called cancer. We told her that there was a lump in Mummy’s tummy. And that she was going to hospital to have medicine to try and take the lump away I think. You know we didn’t want to give it any funny names. This is where resources, such as, well would I, I don’t know if I should mention names but a website, Winston’s Wish, was useful. And also the hospital were good at giving literature as to you know some of the basics, and where to find information. And I thought it made sense to me that you shouldn’t make up strange names or, or analogies, or metaphors for this for a child, because that can actually end up you know sort of confusing things. So we just told her honestly.

And so she understood, you know the way children do. They, they take everything on you know as it is so she understood why Mummy was being sick. She understood why Mummy had to go to bed. She understood why she couldn’t go in and see her. One time or I think one or two times she came in to see Karen in hospital because we didn’t want her to be scared. You know she knew that Mummy went there and that she came back different, so we wanted to take that fear away.

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.

You said that you got help through Winston’s Wish for how to look after and deal with the children, support the children. Would you recommend to other people they got in touch with Winston’s Wish?

Absolutely. Yeah. There, there may be other similar sites but that was one that was recommended to me and it was just the practical advice of what sorts of things can you say to a child. Some of it I sort of knew anyway, the idea of, of not creating metaphors around you know in our case cancer, don’t call it a name. don’t you know, don’t create metaphors that aren’t true because that will, so all that sort of thing is in there and it, and it, just very useful practical advice. How to deal with children was it, what I used it for because that was the only thing I just was totally unsure of what to do.

It has lots of nice ideas about memory boxes and you know all that sort of thing. So just lovely, I would yeah I would recommend anyone with any kind of bereavement. I recommended it to a friend of mine recently who’s got young children dealing with the death of their grandfather. And he said it was useful.

So yeah, it was just this sort of very, very strange lifestyle really of people. Literally in the middle of the night, because sometimes she would have, she wanted her pain relief just before bedtime, so sometimes we would be in bed, and I’d have left the front door open, and the nurses would let themselves in. They’d come upstairs, knock on the door, I’d be in bed with Karen, she you know, she had all sorts of things propping her up by this stage and they’d come in and give her, her pain relief and let themselves out.

That was an injection?

Yeah. Yeah.

Did they ever suggest that you might give her an injection?

No. No.

But they’d, they’d come whatever time you need?

Yeah.

How was that? How was that
consultation managed?

Well
it was, looking back it, it was, it was managed probably as well as it can be.
Because I understand about, more now about what they have to do, they cannot
pull any punches I think, I mean you know so I understand now but at the time
it feels like it’s managed badly because, well I’m still very mixed. I think
that if someone is going to die, and that’s a foregone conclusion and the
consultant knows that they are going to die, and there’s nothing you can do
about that, in a way I don’t see any harm in pulling the punch slightly to
start with. You know on the basis that if you, if you give the news at least
gradually to an extent you just soften the blow. I mean in a way I don’t see
the harm in that.

What did the consultant say then?

She
said that, you know you go into a little clinical room, on, off a corridor, and
sit down and she took a nurse with her. She in fact took two nurses with her
this time, you know so by this stage I know that if someone takes a nurse with
them it’s serious.

And
she said, very matter of factly, she said, Well you know along the lines of,
you, it is cancer and it is malignant, and she said, it’s in your pancreas and
we can’t operate. I think fairly early on she said, We can’t remove it And
then you know so you know, I then said, Well, okay so you can’t remove it,
but and she said, Well we can give you chemotherapy to contain it So I
then said, Okay well, so you can contain it then indefinitely Because it,
you know, you just, I think you go into shock and you clutch at straws, and she
said, There is only so long that you can contain it for you know, it will
develop but we, but we can’t get rid of it

And
I think I then was carrying on with, Okay, well we’ll contain it then So
she, I think she knew then that the message wasn’t getting through. But the way
the, then she just, she then just said, I think it was along the lines of, you
know, You’re looking at, you know, another two years, and basically you need
she said, Basically you need to make provision for your children now

So that was quite shocking.

And
that, it was that phrase, just stuck with me all, you know even, even now I
just think, it was sort of too, she wanted, she was using a shock factor to
make the point. And I was, I’m very mixed, I’m very mixed because you know she
would’ve known that we’re, that as soon as she told us the news you go into
shock. I mean you go into a deep shock where you’re not really thinking
straight. And maybe they’re trained to, you know maybe, I don’t know, but then
you, maybe they use shock to sort of shock you out of it. You know the
equivalent of slapping someone’s face. Where she you know, and she knew that
mentioning the children would make it real.

The
other thing I do remember is that she actually sort of almost welled up at one
point. And I was so glad actually, that obviously that sounds horrible, I don’t
mean that I’m glad that she was upset, it’s just that that level of humanity
you need because it’s so clinical.

And
they’re so well practised in delivering the news, that when she sort of
slightly welled up because she’s, she had young children, in fact she was
pregnant when she gave us the news so she must’ve felt for Karen. They were
probably of similar age so she must have felt for Karen qui