Theadora - Interview 25

Age at interview: 64

Age at diagnosis: 45

Brief Outline:

Theadora's mother developed jaundice in 2004. After doctors diagnosed pancreatic cancer she had chemotherapy, which continued intermittently almost until she died in 2007. She found complementary therapies, such as reiki, helpful and changed her diet.

Background:

Theadora is a senior civil servant. She has a partner and is co-habiting. Nationality/Ethnic background: White Jewish.

More about me...

In 2004, Theadora’s mother looked jaundiced. She was 64 years old and had previously had trouble with her gall bladder, which had been removed. Theadora’s mother went to see her GP, who immediately referred her to see a consultant at the hospital. She was seen within two weeks and was told that she had a problem with her pancreas, probably pancreatic cancer. After numerous tests the doctors decided that the tumour was contained within the pancreas, that there were no secondary tumours, and that she would be able to have a Whipple’s operation. The family was glad to hear this and hoped for a cure.

 

Theadora’s mother went into hospital to have surgery, but the consultant told her in the hospital the night before the operation that he had looked at the scans and that unfortunately he could see some secondary tumours in the lungs, so the Whipple’s operation could not be done after all. Theadora’s mother felt that the surgeon had made the wrong decision and was very upset. Theadora and the rest of her family felt devastated by the news of the cancelled operation, and were very angry. Theadora insisted that the consultant should see her mother the next day to decide on future treatment. She told him that the family might consider making an official complaint about her mother’s treatment.

 

The doctors inserted a stent into Theadora’s mother’s bile duct, to relieve the jaundice. As months went by the stent sometimes slipped out of place so it had to be replaced. Over the two and a half years of treatment Theadora’s mother had five or six stents inserted, sometimes during an endoscopy but sometimes through the abdominal wall. The procedure became more complicated as time went on as yet another stent had to be replaced.

 

Theadora’s mother was given gemcitabine and other forms of chemotherapy. She liked to feel in control and did a great deal of research on the internet and made sure that she was included in clinical trials when appropriate. She often felt sick, tired and unwell during the chemotherapy, but she had weeks when she was not having chemotherapy so was able to lead a reasonable life and even go away on holiday to France. Some of her treatment was within the NHS, some was private and some was funded by research grants. 

 

Another side effect of chemotherapy was hair loss, but Theadora’s mother had some excellent wigs made. She was determined to continue treatment for as long as possible because she had a strong desire to carry on living. She did not have chemotherapy for the last few months of her life, but apart from that she had treatment most of the time.

 

Theadora’s mother attended a support group for people with cancer and while she was there she tried various forms of complementary therapy, such as reiki and massage, which she liked. She tried aromatherapy but did not like that treatment. She also read a great deal about diet and changed her diet and virtually became a vegan. She aimed to make her body alkaline rather than acid. Theadora knows that there is no evidence that this diet helped her mother, but she points out that her mother had been given a prognosis of just six months, but she lived for two and a half years after the diagnosis. 

 

In 2007 Theadora’s mother became more unwell. She had oedema and looked very frail. She walked into hospital to have yet another stent inserted into her bile duct, but the doctors did not manage the procedure, which by then was experimental surgery. She stayed in hospital for the last three weeks of her life. Theadora and her sister had to feed her mother and help her with other things, but her mother was always mentally aware of what was going on and able to communicate and give consent to procedures. She was in discomfort and pain at times so was given strong painkillers, including morphine, which she could self-administer via a pump. She only had morphine during the last three days of her life. The morphine made her sleepy but she was always compos mentis and coherent except on the night before she died, when she became distressed and confused. Theadora’s mother was very distressed for about an hour and a half, but then went to sleep and died peacefully at 11.00 a.m. the next day, with members of the family with her. Theadora stayed with her mother for about two hours after she died, which she felt was very important.

 

Theadora’s mother was in a private room in hospital when she died. She had hoped to die in a hospice but the family and the hospital staff decided that it would be too distressing and that she was too ill for her to spend almost two hours in an ambulance and they felt that the nursing care in the hospital was good, so a transfer did not take place. 

 

Theadora’s mother was Jewish and she had a Jewish funeral with many people from different faiths in attendance. She died on a Saturday and was buried the following Tuesday. About 300 people came to the funeral. There were prayers in the family home for two nights after the funeral and lots of people came to demonstrate the deep affection they had for her. A year later the family had a ceremony and erected a memorial stone at the site of her grave. 

 

Theadora was interviewed for Healthtalk in 2010 

 

When Theadora's mother was having chemotherapy Reiki helped her cope with the side effects

You said that sometimes she felt quite unwell after the chemotherapy?

 

Yes she did.

 

Can you remember what sort of problems she had as a result of it?

 

She was very, felt very sick. And she felt extremely tired, and very uncomfortable. Yes.

 

Did she take; did they give her medicines to help?

 

Yes, I don’t think anything though was, was really good enough. She found the Reiki very helpful.

 

Did she?

 

Which she found surprising because she thought it was a load of old tosh. But she nevertheless was open enough to say, “I think it’s all ridiculous,” but something about the relationship with the Reiki healer and the Reiki itself she found very useful.

 

Did she tell you what happened during a session of Reiki?

 

Yes, yes she did. She’d talk about a feeling of relaxation, warmth, peace, sometimes visualization, and yes she was very intrigued by it. 

 

For others who don’t know about it can you say a bit more about what happens?

 

Yes, she, it would be a session for about an hour. And she would go into a room. She would lie on a bed, table. And then the Reiki healer would hold her hand, it was a woman, would hold her hands, about eight, ten inches away from her body, and channel universal healing energy is what I believe they would describe it, to my mother.

 

And she’d feel her feet get very hot, and her hands would get very hot, and she found it a very positive experience, which she would never ever have done before she had cancer. But she was absolutely clear that anything was an opportunity. She would, she never hesitated for a moment that her focus was life.

 

Did she have to pay for that, or could she have it free?

 

No. It was a free cancer care support centre. And you could give a donation, which she did. And we gave a donation and we asked people to donate to that cancer centre when she died. But there, everything that was there was free.

 

Theadora's mother changed her diet and almost became vegan. She felt confident that that improved her life expectancy.

She did a lot of exploration about diet. She was very interested in the Bristol Cancer Centre [now renamed Penny Brohn Cancer Care] method, and she read about that. And she looked for people who were interested in the Bristol Cancer approach in the area that she lived in. And so she went to see somebody, to talk about that. And she changed her diet radically, radically, radically. She talked to, she read the Michael Gerson book about living with cancer and your diet. And she changed her diet so she became very vegan virtually. Lots and lots of fresh fruit and vegetables, and she became very interested in the issue about alkali and acid. And so she ate, she ate a broadly alkaline diet. It became extremely complicated, but we did what she wanted to do…

 

She for example drank fresh carrot juice three times a day. She cut out all dairy. She cut out all meat. She cut out caffeine,, and she cut out citrus fruits. She aimed to make her body alkali rather than acid. All one can say is that the prognosis, because whilst she wasn’t interested, I was interested, and we would talk to the doctors, and the doctors reckoned she had six months post diagnosis. She lived two and a half years.

 

So who knows? Diagnosis and prediction is a very particular art form, and the interaction with the patient is really important. So she, she was very clear and she was, she felt confident that what she was doing was making a difference. And certainly her mental attitude which was about control, doing what she could do, was important.

 

Theadora's mother had her private room in the hospital and good nursing care, so Theadora felt it was not necessary to move her to the hospice.

Was it private care before when she had the diagnosis etc?

 

Not the diagnosis, but after diagnosis she went privately. It was very cold, the room. I remember that, we used to sit with blankets on, and outside it was about 80 degrees. And then the night before she died was the, at about 11 o’clock at night. Well I should say, there was a, she’d already looked at hospice care, and her desire was to die in a hospice, not to die at home, and not to die in a hospital. And she had looked at a particular hospice which she had, she felt was where she wanted to die. And so my sister and my father had visited, I hadn’t actually visited it. 

 

And when we realised that she was significantly unwell during this three week stay [in hospital], we talked to the palliative care team about the transfer to the hospice. But her illness deteriorated at that point so quickly that they were making plans to move her, but the concern was that the move in an ambulance, which would have been at least an hour and a half in ambulance from where she was, would’ve been really, really disruptive.

 

As I said we were lucky enough that she was in a private room, she wasn’t on a ward. If she’d have been on a ward I think we’d have said, “Bung her in a, we’ll take her to the hospice, it doesn’t matter.” But she was in a private room that was quiet; it was very good nursing care. We could stay there, so we didn’t feel an enormous need. If she’d have been in a ward we would have done. But we kept going with that, so about 11 o’clock before, the night she died, was the first, was the only time she lost orientation. And she asked for us, we came, well I was there staying overnight in the hospital. There was my father who came and she was distressed, “Where am I? What’s going on?” And she had a lucid conversation where she said, “I don’t really want to do this anymore. I’ve had enough.” And we said, “Don’t do it. You don’t have to do it anymore. It’s really, you don’t have to do anything you don’t want to do.” And she went to sleep, and she died at 11 o’clock the next morning.

 

So the ending was, and the only period when she was distressed was very, very short, which was a real blessing for her, and really for everybody else. And although she died in hospital she, she died in her own room, she died with people, she was never on her own, there was always family with her, and it was as dignified as you can have in a hospital setting.

 

Theadora described her mother's funeral. After the service the family held prayers in their home for three nights. Others called to pray and eat together.

Well she died on a Saturday, and in fact there was some medical, it wasn’t a complete post mortem, but something they needed; they wanted to look at and do. And she got buried on the Tuesday, so very quick, but not as quick as you can have in Jewish [funerals], you can do it the next day virtually.

 

And we, so we just needed to set that up really and get that in train to make sure that, you know, everybody knew and, what was going to happen, where it was. She knew a lot of people, and she had been, you know we had talked about how she wanted her funeral. And it’s a, it’s a standard, obviously standard service, but if there was anything particular she wanted read or talked about, and there were a couple of bit’s and pieces. And then my family had asked me to write, I suppose you’d call it a eulogy, but an address. Which I’d done, which I needed to do, but I needed to write something that they all agreed with. You know writing things by committee is always, always interesting. So we did that. 

 

And then in the Jewish faith you have prayers in the home, after the service every night, for a period of nights. And people come to the house and you have prayers and also people sit and drink tea, and eat cake. And they bring you food as well. So we had a lot of food. 

 

Was the funeral as you hoped it would be?

 

Yes. Yes it was, about 300 people, she was a very socially active woman who knew a lot of people in a lot of different spheres, and people came at very short notice obviously. And then we had the prayers in the home for three nights, and lots and lots of people came. And it’s how she would have wanted I think people to, to come and demonstrate the affection that they had for her.

 

How did you let everybody know so quickly?

 

Oh, we phoned them.

 

Yes, that’s a lot of people.

 

We phoned them. We phoned them and they told other people. We’d phone people and say, “Tell everybody in the group,” or “Tell everybody,” you know she was a school governor, she, so we’d say, “Tell the school,” you know she taught in various places, we say, “Oh tell people.” So people told people. And we told key people in networks.

 

Did you actually see her again after she’d been taken away by the porters?

 

No. No, no we didn’t.

 

And then the funeral directors brought her to the, the …..

 

Yes, they bring her in the coffin to the sort of chapel. And then there was the service there and then they, it was taken out into the grounds. So,

 

Was she buried or cremated?

 

She was buried.

 

She was buried, for traditional Jews, they don’t get cremated. So she wouldn’t have been. 

 

Nursing was not consistently good and professionals did not always treat Theadora's mother with dignity. Theadora thought one doctor was incompetent.

You said that in the hospital the nursing care was always very good. 

 

Well not consistently.

 

Did she need a lot of nursing care?

 

In the last three weeks?

 

Mm.

 

She did. She needed, you know she was uncomfortable, and she needed people to sort of move and feed and adjust drips and that sort of thing. The medical care wasn’t always constantly good. And then I mean throughout the three years we had some appalling doctors and nurses involved.

 

Why were, in what sense were they appalling?

 

The generic thing would be their, their inability to deal with somebody as a person, to really understand, to be compassionate, to be thoughtful, to be caring, to treat somebody with dignity. At the worst there was one doctor who was simply incompetent. He was a junior; he was clearly not reading what needed to be done. You know by the time we were in year two, we knew more than they knew. And he wasn’t competent. 

 

Theadora and her father went to the local register office to register her mother's death. It felt bizarre to share a room with people waiting to register a birth.

Were there practical things you then had to do?

 

Yes. We obviously had to go and register the death and I went with my father to do that at the nearest registry. That was, and that’s bizarre, because you’re sitting with people who are registering births. And that’s a, in some ways it’s lovely, in some ways it’s lovely because you are sitting with people who are celebrating, I can remember sitting next to a man who was celebrating the birth of twins, and he was in a complete state of shock. And it was also in a place where there were people who were migrant, immigrant populate, who were coming in to get various other paperwork around that. And you’re all sitting together in a waiting area, very squashed up and it was very hot as I said, a very hot summer. And you’re registering a death. At one level there was something quite nice because as you know in death, there’s life. Things go on. Life happens. So, I wasn’t appalled by it, but it was a very strange thing to be in that mixture of a place. But the actual, then going in and registering it and doing that was dignified. I couldn’t say that it wasn’t. And then we had to get her buried. Jewish people get buried very quickly. So we needed to sort that out.

 

Near the end of her life Theadora's mother needed another stent - her sixth - to treat her jaundice.

Oh as soon as the stent [was inserted], yes, her jaundice was fine. And then we always knew when the stent was slipping because she would start to go yellow again. During the course of her illness she had five stents. That’s very unusual, and certainly in the specialist hospital she was treated they had never put that many stents in anybody, because people usually die.

 

She didn’t become seriously, seriously ill in a way for, well it’s hard to say really. She started to become more, she started to look more frail and ill and small maybe two months before she died.

 

And she became oedemic, so you could see that that was starting to happen. 

 

She had oedema?

 

Yes. She went into hospital three weeks before she died. She walked into hospital, carrying her suitcase, in order to have another stent put in. So this was either the fifth or the sixth; I’m slightly hazy as to at what point that was. They couldn’t get another stent in. It was just too many and too many problems. Well they got one in but it was very, very difficult. And it was slipping and it wasn’t clear. And she was more ill already. And that level of intervention was hard, was hard.