Saba - Interview 19

Age at interview: 45

Age at diagnosis: 65

Brief Outline: Saba's mother was diagnosed with metastatic pancreatic cancer 4 years ago after having appetite and weight loss. Ten weeks of gemcitabine chemotherapy had no effect on the cancer. She deteriorated gradually and died 11 months after diagnosis.

Background: Saba is a designer. She is single and has no children. Ethnic background: Asian.

More about me...

Saba’s mother’s symptoms began a year before her diagnosis, and included loss of appetite, rapid weight loss, tiredness and low mood, a metallic taste in her mouth and burning sensation in her eyes. The GP attributed the symptoms to depression and an allergy, but Saba’s mother suspected a liver problem. She asked for blood tests, which came back normal. At a family party a relative suggested that her mother should seek a second opinion privately from a consultant friend of his. The consultant found that her liver was enlarged and recommended a scan. The GP seemed reluctant to arrange this, so it was done privately and showed metastases on the liver. Saba knew nothing about cancer and sought information from the internet. She was shocked to discover that metastasis meant the cancer was already very advanced.

 

Saba’s mother was referred to hospital for tests and it turned out that a request had been made by the hospital 4 months previously for her to have investigations on her liver which had not happened. The tests confirmed cancer. Up to this point Saba’s mother had not been told that she might have cancer and the doctors seemed reluctant to speak to her directly and implied that they would like Saba to tell her the news. Saba declined and was shocked at the matter-of-fact way in which they broke the diagnosis. Two weeks later they saw an oncologist who told them that the primary tumour was in the pancreas and there was a choice of two types of chemotherapy' either a week’s intensive course as an inpatient, or a weekly outpatient course of gemcitabine, but suggested that Saba’s mother might be too frail to withstand the intensive treatment. Saba asked about life expectancy and was shocked to learn that her mother would live only a few months. They chose the gemcitabine. The first dose caused a fever, so subsequent doses were reduced. After 10 weeks of chemotherapy the tumour had not shrunk at all so all further care would be purely palliative. 

 

Saba’s mother declined gradually over the next few months, developing swollen feet and back pain, and later shingles. On two occasions she stayed in a hospice for a few days where she was well cared for. She became gradually weaker and couldn’t walk and began to spend a lot of time in bed, and developed bed sores. When she developed chest pains and breathing difficulties she was admitted to hospital then transferred to the hospice. The day after entering the hospice she died. Saba had been glad that her mother had died there because the atmosphere was serene and the staff were very caring and respectful of their Muslim traditions.

 

During her mother’s illness Saba had been working abroad a lot and felt that she and her family had not been given enough support in dealing with the illness on a day-to-day basis. They received some support from the GP, District Nurse, a Macmillan Nurse and Social Services, but Saba was left to do a lot of her mother’s personal care herself, at a time when she would have preferred to spend quality time with her, and felt that she had to fight constantly to try to get the level of professional care that her mother needed.

 

Saba was interviewed for Healthtalk in 2010

 

Saba didn't realise that chemotherapy would prolong her mother's life only by months. She didn't know enough to make an informed choice.

Went to the oncologist who told my mother … I went with her. And they basically sort of said that she had, you know, they felt that the primary cause of the metastases was pancreatic cancer. They needed … they either needed to find out where the primary had started from. And I sort of, you know, I insisted that I wanted to know, and they just sort of said well at this stage that was probably not the main concern now. The main concern is dealing with the secondary stage of it or final stage of it. 

 

They sort of said to me that, well they said to her that they would, could offer her two forms of chemotherapy. One was an intense course that they would have to do at [name of hospital]. And that would mean keeping her in for a week of intense chemotherapy. Or there was a new drug that gem, gemcitabine that they could do where she came in as an outpatient. So she would sort of come in, I think it was once a week over a period of … I think it was a course of twenty or ten. And I would think after ten they would assess to see what impact it had had on the tumours. And that would be, would just mean that she could go in on a sort of weekly basis and still go home. But they basically said it’s our decision. 

 

Now I had no idea what any of this meant, nor did my mother at this sort of stage. And I wasn’t sort of … I wasn’t told at any stage that the chemo they were offering was palliative, or they may have mentioned that, but I didn’t know what palliative meant because I never had to deal with those sort of terms. Didn’t know at that stage that they, they weren’t offering chemo that could actually help the cancer. They were just trying to prolong her life for a slight amount of time. 

 

So we, we decided, to cut a very long story short, that we would take the gemcitabine route, at this stage still not realising that that was the milder dose and that would really be quite ineffective in terms of, you know. And as to today, that’s one thing I still feel upset about, that we were not, nobody actually said to us at any stage that neither options are going to decrease the tumour, it’s just chemo to give her a better quality of life for the next few months, or to prolong, or to try and stop the tumours from growing at a, at a, you know, at a rapid rate, that it may prolong her life another month or two months. We were never told that at that stage so I felt I wasn’t making, I couldn’t make the right choices not knowing the background to what we were being offered. I felt that it was up to us to find that information for ourselves. And up to us to make the decision. They were just sort of saying, “This is what we can offer you, you decide.” But not being given enough information.

 

Saba's mother had gemcitabine infusions. She developed fevers and was prone to catch infections, so the dose was reduced.

Anyway, they started the chemo treatment and, you know, it was at our local hospital and it, and it was fine actually. She didn’t, I think the first couple of sessions that she had, I think the first session she had had quite an impact on her physically. She kept getting a fever. She would get a fever for the first day or second day after and they, they said they could do that because the immune system drops as her, she could be prone to catching infections. We couldn’t let any children like, she couldn’t see her grandchildren during that time because, you know, young children often pick up colds and flus and we didn’t want her to sort of catch that. She did have nausea the first time but that was as a result to; they’d given her some antibiotics because I think she had got a bladder infection, a slight bladder infection. They’d given her antibiotics and I think that was a reaction to the antibiotics and not actually to the chemo. Because I gave her anti, anti-nausea tablets with the chemo as well and I think that, that really did help. But I think the first two sessions of chemo she was quite ill. And one thing we noticed that she’d got one of her eyes became completely bloodshot. So I think what they did was, I think the second time I think they put the dosage of chemo a little bit lower, because they felt that her body just was a bit too frail actually to sort of deal with it. 

Saba did not understand what her mother's doctor meant when he used words such as 'metastases' or 'lesions'.

But the doctors explained that they had found metastases in my mother’s liver. Quite a few And they were … I remember the exact words … that unfortunately they had found metastases, lesions, and multiple lesions within my mother’s liver, and advised that she gets another scan which gets looked at to find out where the primary cause of the cancer is.... 

 

At that time I had absolutely no exposure to cancer. Knew nothing about the implications of cancer, you know, things you hear, hear about, so it’s a shock when you’re sort of faced with it. I had no information. I went on the Internet to find out exactly what metastases were. I just saw the word ‘primary’ and just automatically assumed well maybe these are the early stages of cancer, because I’d seen, you know, you sort of zone in on certain words, and heard of many cases, you know, where people had been diagnosed with cancer at an early stage and with all the technology and all the medicine at this stage, you know, I wasn’t … I felt quite positive. 

 

I had a look at it on the internet and I had, I had a friend who had a friend of a friend, who was an oncologist, and I’d sort of called her. But when I looked at it on the internet I just saw ‘metastases’ and realised that actually we’re talking about final stages of cancer. That when the cells metastases, they go through blood stream and end up basically in the liver. And at that time it’s like you just don’t want to accept that.

 

Near the end of her life Saba's mother had felt very tired, her feet were very swollen and she caught many infections.

I think the biggest thing that we noticed was that her feet started to swell quite a lot, huge. My cousin was getting married in the summer, and my mother had been looking forward to my cousin’s wedding. She had, like, you know, it’s going to be a big occasion. She had, like… we’d gone shopping and bought her new saris and new shoes. She was looking forward to sort of like getting dressed up. But her feet were starting to swell. I mean they were huge. It was almost as if she had elephantiasis and that was due to the fact that because her liver was starting to slowly become dysfunctional. Her body couldn’t pump her sort of body water so it would all go to her feet. So she had to lie with her feet up all the time and we’d have to give her these special tablets that would, you know, get rid of the water. But that was, I think that was the most difficult thing for her was that she couldn’t fit into any of her shoes. She couldn’t walk properly because her feet were swelling up. She felt tired a lot of the time. She was prone to picking up colds and flus. I had to … we got a carer that would come in one day a week for about an hour, would come in the morning to, to help my mum get washed, make her breakfast. But because things are much slower with my mum, they would almost have to literally leave after, before the one-hour was up. So afterwards she’d be left sitting at the dining, dining table eating her, halfway in between eating her porridge, you know. And so it didn’t, I didn’t feel that was really of, of a lot of use. So I would say the hardest thing is the palliative care after that. 

Saba had had to fight to get help for her seriously ill mother at home. The district nurse from the general practice called only once a week.

So we had to deal with her shingles. At that point I was asking for a carer to come in literally on a daily basis. My father’s heart problem had got worse so he couldn’t literally cope. And, you know, I had to wash my mother and clean her every day. We had a carer that came in, but I didn’t feel she was really giving my mother the best care, because they would sort of leave her halfway in between. By that time it was getting more and more difficult to take my mother to the bathroom as well, so she was becoming a bit incontinent. Well she wasn’t actually but they wanted to give her disposables, which she hated, which meant that we had to sort of clean her on a regular basis. So I’d say after she had the shingles it just, you know, her feet were swelling up more and more, it just sort of all went downhill. And it meant that her care was becoming a 24 hour situation, to the point that after, like, I’d say within, like, a month it got to the point where she couldn’t even walk properly any more, she was so feeble. So we were literal, literally having to lift her up and down, in and out. 

 

She was … they’d brought this hospital bed in for her, where I was constantly having to lift her up, because she was so tiny by that time she was sliding down the bed. And to make her comfortable you were having to constantly lift her up. The care worker couldn’t lift her because of health and safety reasons. So myself and, and my frail father used to have to find a way, you know. I’d literally have to show the care worker how to do it, you know, using the bed sheets and how we could sort of lift her up...

 

And then, I’d say in December she, by that time she was really weak, she couldn’t walk, she was bed-ridden, she was getting bed sores. We weren’t getting, you know, the District Nurse was only coming in once a week. We were fighting to get more. It, it then became, for my father and I, a fight to get more care for my mother on a daily basis. The District Nurses refused to let my mother have more care. They felt that she was fine and that we had enough between my father and I, even though I was working in Germany there was enough of us around. That was a really horrible period because it was just about fighting to get as much care for my mum. 

 

Saba's mother hated being in hospital, partly because the hospital was short staffed and a male nurse shared in her care.

And then I think she got to the stage where she was finding it difficult to breathe sometimes so she had some sort of pains in her chest, and her feet were really swelling up now because by this time her body just couldn’t function normally. And I remember that, calling the doctor every time she couldn’t breathe properly. At this stage it, it got quite bad and what had happened was that the water was building up within her body and it was filling up into her lungs. So at that stage they took her into hospital. 

 

But that was the worst time ever because they left her in a sort of, like, the emergency ward overnight. But because she was on drugs, certain drugs now I think it just meant that she was getting more and more, a bit more and more delirious as well. Of course she had her sort of bed sores. They’d given her some medication to try and get the water out of her system but she ended up just urinating on herself quite a lot. 

 

And I remember at that stage they sort of left her in the sort of emergency ward not changing her incontinent pads and I had to sort of go and try and find someone. And I remember, I, I remember to this day in my sort of panic to just get somebody, because for 12 hours now she’d been left in this wet nappy almost, and she said to me, “I need someone to change me, I need someone to change me.” And I just grabbed anyone, this lovely nurse, who was a male nurse, for, this Filipino male nurse said, “Look, I’ll come and do it.” He did it, and afterwards I remember my mum getting really upset, she cried. And for her it was the worst indignation, that a male had actually changed her and cleaned her and she just felt completely violated. Though he didn’t, you know, he really did, but I didn’t even think about that, I didn’t even think, you get to a point where you don’t think about that person, you know, that they're still a human being and she still has, there’s an emotionality here, it’s not, you, while you’re trying to deal with the physical things that you disconnect the, the human-ness from it and you just think as long as I can get her changed. But she was really upset that, you know, of the fact that she felt humiliated, that she’d had to expose herself that way to, you know, a male nurse and be cleaned like a baby. 

 

And you get to the point where you think she probably wouldn’t even be thinking of that in the pain that she’s in, but she was still and you sort of forget there is still a sense of her dignity. In all of this, there is still her dignity as a human being that is above all of this. And somewhere along the way you lose that. And everybody else seems to lose it because they see it more as a physically as opposed to a human thing as well. And I think that’s the biggest wakeup call for me that I realise it now it’s not just about that, it’s also about that’s all she’s got left to hold on to. 

 

Saba had 'total confidence' in the hospice. She and her mother were treated with great respect and her mother was made comfortable until she died.

And what was really nice was that at the hospice I could bring all the things that she liked and I was sort of burning lovely oils to make it nice, sort of comfortable for her. The pain was getting worse in the evenings so they were, by now, and they were asking me, “Is it OK if we give her morphine now? Is it OK?” You know, and that’s what I felt, that they were actually so aware and so respectful of what you wanted as well, and what she wanted, and of treating her and you as human beings that actually had a mind and had wants and desires. And at every stage they were consulting with us, asking us, “Is it OK, this is what we would advise, this is what we can do to, you know, would you agree to that? Is that OK?” And I was like, “Yes”, I had total confidence that if they were going to give her morphine it was because they felt that she needed it not because they were just trying to knock her out.