Hugh - Interview 27

Brief Outline: Hugh's mother was diagnosed with pancreatic cancer in early 2000. She had a Whipple's operation and then weekly chemotherapy for six months. In 2001 she became ill again and tests showed that the cancer had spread. She died peacefully in July 2001.

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In early 2000 Hugh’s mother experienced some abdominal pain which she called ‘the rats’. This pain occurred particularly when she was hungry. Then she developed jaundice so she went to see her GP, who immediately referred her to a specialist. After various tests the specialist told her that she had pancreatic cancer, and that she only had about three months to live. This was a shocking piece of news for her and the family. 
The doctors then decided that surgery was possible, so Hugh’s mother had a Whipple’s operation. This was a major surgery. It took her about three months to recover, perhaps partly because of an infection.
After Hugh’s mother recovered from the surgery she started weekly chemotherapy, which continued for about six months. She experienced no serious side effects and was able to enjoy good quality life. Eventually, in 2001, tests showed that the cancer had spread to other areas of the body. The doctors told the family that Hugh’s mother did not have long to live. She went home and was cared for by family members and by a wonderful team of Marie Curie nurses. The palliative care team made sure she was comfortable and gave her a morphine pump to control her pain. All the NHS health professionals involved in her care were extremely good. 
Hugh recalls that his mother hardly ever complained about her illness and that she handled her final days with great humour and bravery. In July 2001 she died peacefully at home with her family around her. A great many people attended her funeral. Hugh helped to arrange the service, which included music from Bach and music from the 1950’s musical Salad Days, music which Hugh’s mother had enjoyed very much. 
Hugh was interviewed for Healthtalk in 2010

Hugh’'s mother had looked yellow due to jaundice - the first sign that something was wrong. She...

I’m trying to remember but it was in two thousand and, the year two thousand actually, early two thousand, that my Mother, who’d never been particularly unhealthy in any way, went pretty yellow. Jaundice was the first alarm bell and she went to the doctor and he didn’t like the look of it. 
Did you remember her talking about any other symptoms apart from the jaundice? 
Yes, funnily enough, she used to get a thing she called ‘the rats’, she said it was like rats gnawing at her intestine.
And she felt like, she used to think it was when she got hungry and she used to eat, but looking back on it I suspect that was the pre-cursor.
She didn’t talk about any other pain or bowel problems?
Well she didn’t talk to me about bowel problems.

When Hugh’s mother was diagnosed with cancer most of her friends were ‘fantastic’ but others...

Did you find it difficult telling other people about what had happened, or did your Mum find it difficult? What were other people’s reactions?
Well I do remember after the diagnosis, a lot of people were fantastic, and a lot of other people were meaning to be fantastic, but just struck the wrong tone. They would send pretty much, ‘In deepest sympathy’ cards or, ‘In Memoriam’ cards, you know, really gloomy sort of religious death cards, and they’d leave these messages on my Mum’s answer machine. Really such solemn, you know, “I’m so very sorry to hear…”, and they all took a little too much interest. It was like they were always calling, and in the end we called them ‘the ghouls’ because they just were sort of getting too much satisfaction out of, well not too much, but too much, you know, vicarious sort of fascination out of the drama.

Hugh thinks that his mother was reluctant to have the operation but that she was glad that she...

And how were the treatment decisions made? Did your Mum make those on her own, or with you or with other members of the family?
No she actually made it with my father and with me and my brother.
And I think she quite often was probably the most reluctant to have, well she was certainly the most reluctant to have the operation. I think she was sceptical of its success - thought it would be very intrusive and invasive and felt that if it didn’t have a high chance of saving her life then she’d rather just have some quality of life in the last few months. But I think we all said, “No, give it a whirl”.
And I think she was grateful because it basically gave her an extra year.

Hugh’s mother seemed fine throughout her chemotherapy. She did not lose her hair.

What about side effects of chemotherapy? You said she didn’t lose her hair. Did she have any other side effects do you remember?
No. I don’t remember her having anything bad like that from the chemo. The chemo went on for I think about six months, and she seemed fine through it, and it was really you know, eventually she got ill again, but that was the cancer not the chemo.

Hugh noted that it may be hard to find a burial place in a churchyard or cemetery. His mother was...

A bit of advice I’d give, if you live in a big city like London you do need to book, and if you want to be buried and not cremated you do need to book a space early. It was really hard to find her, we couldn’t, I mean the Church she’d been going to all her life and we couldn’t get into the churchyard.
She wanted to be buried?
She wanted to be buried, yes.
So did, where did she…
…So she, well she ended up in a municipal graveyard, which actually in a way was quite appropriate because it was right opposite the state school where she had done a lot of teaching.
Did you have a memorial stone made for her?
My father had a memorial stone made for her, a very nice classy one. Yes, and I don’t know. I mean graveyards are, I don’t do a lot of visiting. I don’t think Mum’s there, you know. I think if you honour the dead you do it better by doing things that they would have approved of rather than standing in a windswept municipal cemetery on a November evening.

When his mother was ill Hugh had great admiration for the NHS. The doctors were ‘marvellous’ and...

To go back to the situation in the hospital. How was the communication between you and the doctors, or your Mum and the doctors?
Well great. I mean they could not have been more marvellous. There was a surgeon, who did the operation, and then there was the chemo guy. Then there was my Mother’s GP. And I just thought they were all fabulous.
Have you got any advice for health professionals?
No. I have pretty much just admiration for health professionals and particularly the National Health, because, as I recall I had screwed up and had not got my mother on private medicine by the time she got cancer. But my Father was, but my Mother for some reason I hadn’t done it, and, maybe because she was always so healthy, and so this whole thing was done largely on the National Health and I have massive admiration for the National Health.
So did she have a room of her own? Or was she in a ward?
She was in a room of her own. Did we pay? Did they offer her that? I think they offered her that. I can’t remember.
Sometimes National Health can offer people rooms.
Yes, I think they did, yes, I think they did. I think if they hadn’t I think we would have paid.
So the hospital environment was alright as far as you were concerned, the physical side of it?
Well yes, I don’t think the physical environment of a lot of hospitals is that fantastic, no-one would pretend they are. The big National Health hospitals in London, but the nurses were just unbelievable, fantastic.
Do you want to say a bit more about nursing care?
I don’t know much about nursing care except for what I saw, which was, I just thought these people are amazing. And, you know, they earn a pittance, and I always think, whether it’s the normal NHS nurses or whether it’s the Marie Curie nurses whose entire life is spent sitting in the dark with someone who’s dying, and you couldn’t really imagine a more gloomy job, and they earn almost nothing, is if I put them next to my hedge fund friends, I know who’s happier.

The Marie Curie nurses and a doctor specialising in palliative care looked after Hugh’s mother....

They did more tests and it didn’t look good and the cancer had in fact spread and I remember the day I was sitting with her in the hospital and the doctors came in and said that it was not good, and really she had about two or three weeks left at that point. And that was pretty bleak. 
And that is indeed what she had. And so we brought her home and that’s when the magnificent Marie Curie nurses came into our lives. We hadn’t known about them before and the GP explained that there was this amazing service where these nurses come round for free - it’s a charity - and they look after the patients, especially at night. It gives a lot of relief to the family and they were very professional. And they’re also great girls, I mean they’re just a fantastic spirit and my mother got on with them very well, had a good gossip - she knew all their sex lives. And, anyway they were great and there was a wonderful doctor who sort of specialised in end of life care and palliative pain relief and stuff. 
And she was on the morphine drip; I remember having to rush out and buy batteries for that. And then, yes, she duly did die. But I mean as far as you can have a good death, I think she had a pretty good death with her family around.
Did she die at home?
Is that where she wanted to die?
Yes that’s right, hence the Marie Curie factor, because that’s what they’re there for, they’re there if you want to die at home. And apparently most people do.

Hugh’s mother handled her death with good humour and bravery. He thinks she died peacefully.

It’s rough, pancreatic cancer is a rough one. And it’s not good. It’s not good. So I’ve got nothing good to say about it. The only thing I can say is that death, I think, can be handled in many ways and you know I like to think that my Mother handled her death with such good humour and bravery.
And you talked about sitting next to somebody when they’re dying. Did your Mum have a peaceful death do you think?
Yes, well as I say I think she had a very peaceful death. A lot of family visiting, and we were having a laugh. I think pretty much the day she died, maybe it was the, certainly the day before we had a laugh. I was there with my Aunts and my mother had wanted her hair to be washed. She was very, very finickety about her hair, and normally went to the salon over the green. And so my Aunts washed her hair and there was a lot of laughter. And then to tease my mother I said I would blow dry it, and I did a kind of Italian hairdresser routine for her, and we had a, yes that was a laugh. I mean we did have a lot of fun with my Mother’s cancer one way or another. I can remember being in hospitals and I’d go and visit her and frankly kick her out of bed so I could lie in bed with an oxygen mask, because I had such a bad hangover. Endless fun, you know, there’s endless fun to be had with rubber gloves and cardboard potties. It certainly was not grim. And I mean there’s a certain grim undertow to everything, but we definitely had a laugh. 
Were you actually with her when she died?
I wasn’t, I missed it. I was at home and my brother called me over. So I missed that moment.

Hugh said at the end of his mother’s funeral the organist played Bach followed by ‘upbeat crazily...

I think there was part of Mum that quite enjoyed having cancer. She was always very, she was one of those women who loved medical dramas all her life, you know, that’s what she liked best on the telly.
And she didn’t like anything cheerful. She said in terms of drama, she said, “I only like sad, darling”. So she was virtually born to have a terminal disease. And she was very classy with it, and quite funny. She was always terrified that we were going to have too good a time at her funeral. She said, “I don’t want to have anyone having any fun”. And she insisted on very, very sad music. She kept gripping my wrist in the last couple of days and ordering more and more really tragic Bach. 
Did she help you plan her funeral or did she…?
Yes, well as I say, she was planning the music and, but I disobeyed her in the end. I mean I did have the Bach for her, but I also, she used to play the piano and she used to work with, a sort of default thing she would always play on the piano was tunes from that 1950’s musical Salad Days, which had actually been her first date with my dad. 
And so I had the organist, at the end, the very end of the funeral, play all this very sad Bach and everything, play these very upbeat crazily cheerful tunes from Salad Days, and that’s, I mean that’s what made everyone cry.
Was the funeral as you wanted it?
Yes, I think it was, as far as a funeral can be, a success. I mean it was very well, you know, there was a huge turn out. Yes, my Mum was quite loved.

Hugh’s mother was given about three months to live. Then doctors decided they could do a Whipple...

She was diagnosed as having pancreatic cancer, which is not, no-one wants to get any cancer, but pancreatic cancer is classically not one that you particularly want to get. And the prognosis was pretty bleak and they said they thought she probably had about three months to live.
And then in the subsequent days they slightly changed their mind, they revised that and thought that they could do this operation to remove the pancreas, something called a Whipple operation. And they said that there was a, I can’t remember what the percentage chance was - it’s exactly the sort of thing you need to know and I can’t remember - of that being successful in terms of a total cure, and then there was a certain other percentage which was successful for, you know, to give her another few years.
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