Saba - Interview 36

Age at interview: 45
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.

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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 angry because she felt the consultant had expected her to break the news to her mother,...


And they rang me and sort of said, “This is the situation, it has been diagnosed as cancer, as we had feared, metastases, we need to obviously let you know”. And I said, “Well what are you saying, do I, are you going to tell my mother?” They said, “Well it’s up to you.” But I felt that they were pushing the ball in my court, which I thought was quite unprofessional because I just thought it’s about my mother and it’s about you. I’m her daughter but it’s not for me to... how do I break the news to Mother? I can’t tell her these things, you know, I’m not professionally geared up.

So I literally had to sort of say to them, “What are asking me to do here? Are you at any stage going to call my mother in, I’m expecting you to break the news to her. All I can do is be there to support her and I don’t feel… I know nothing about the situation that I can even break the news to her before we come to see you”. They just said to me, “Well it’s up to you how you want to deal with it”. So anyway I said, “I think it’s for you to tell her because there’ll be questions that she may ask”.

So I took… we went to see the consultant with my mum. And they just, just sort of said to my mother, “We’ve had the results back from your cancer… I’m afraid, you know, you have cancer, and it will be passed on in the next two weeks… we’re passing it on to an oncologist and we’re going to ask you to just go… we need you to go and do a blood test now and we’ll get back to you”. And I was shocked at, you know, I thought they would have somebody there, you know, somebody, a Macmillan nurse or somebody there when they told her the news to sort of help to sort of counsel her at this stage. But my mother I think was just shocked because she just went and said, “Oh okay”. Obviously she, there’s a language barrier. She could speak English but I don’t she felt confident when it comes to an emotional matter.

And, you know, I didn’t really know what to say to her. What do you say? So I, I was really angry with the consultant at how they’d handled it, that it was done in a very sort of cool way. And I can understand from their perspective, on a professional level that’s the only way they could deal with it. But here you’re talking about, you know, a disease, that affects not just you on physical level, emotional level and all the sort of people around you, and it was a great unknown. At no point did they tell her that her cancer was terminal. At no point did they sort of say, “This is the situation”. She didn’t ask any questions because she didn’t know what to ask at that stage. And I think she was just absorbing the shock, the shock of it.


The doctors asked Saba to decide which of two different chemotherapy regimens her mother should...


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, 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.  


Saba pleaded with a nurse to give her mother more pain relief but she refused; eventually Saba...


And it was so funny because that, that afternoon her pain just really increased. And we went to the doctors at the hospital and they gave her these drugs. But she was getting breakthrough pain. And I’d never seen my mother in so much pain at that point. But she was getting real breakthrough pain. And I was going, I remember going to one of the nurses who was doing her sort of rounds of giving drugs, and I was sort of saying, “Look she’s in a lot of pain now, you’ve got to give her something”. And she just said, “I’ll get round to her when I’ve finished everybody else”. But she was literally to the point where she almost, like, screaming in the ward and my brothers were almost like having to hold her down. And she just… this nurse just, I wanted to… it’s the first time in my life I’d wanted to just slap somebody around the face and I sort of said, “Can you not see how much pain?”. And I didn’t want… it’s not that I couldn’t say it because I didn’t want to say in front of my mother, that, “She’s terminally ill, she’s dying of cancer. And all you can, you know, it’s not like you’re giving out paracetamol, she’s not on your checklist of the next one to give out paracetamols or, you know, something for infection, she’s actually dying.”

And the irony of it was there were all these sort of little note papers stuck on the end of each bed about pain, you know, if you were in pain, tell us immediately. And yet she was doing nothing about it. And then she sort of said to me, “I’m not allowed to give her anything for the next four hours because I can’t give her anything in between.” And I said, “Yeah, but she’s having breakthrough pain, you can see, even I, not a doctor, knowing that she is having breakthrough pain at this stage. So whatever you’re giving her is obviously not working.” You know, “It knocks her out for a few hours and then she’s breaking through it.” I then had to just march down to the doctor’s office on, in the hospital ward and I sort of said to them, “Look, if you cannot manage pain,” I said, “my mother’s terminally ill, she’s dying, she’s going into a hospice tomorrow but if you cannot manage pain here then I’m going to have to physically take her out myself and take her to the hospice.” At which point the doctor’s like, “No, no, no, oh, let me get her files.” I said, “I can tell you she’s having breakthrough pain.” And he said, and then he sort of read it and he said, “Yeah, it seems that she’s having breakthrough pain.” I said, “That’s exactly what I’m telling you.” But as soon as I confronted him and said to him, “If you cannot manage pain then she shouldn’t be here. She needs to be back in the hospice now, not tomorrow,” it, it took that, for me to confront him about them managing pain for him to actually get some action.

But even then it took me an hour to wait for somebody to be able to come and actually give it to her.


Saba was working abroad on a freelance contract and decided to take a month off to spend time...


She started to obviously sort of get weaker and I think the sort of couple, the last sort of two or three weeks before she passed away, no, I think, sort of two weeks before she passed away, I’d taken, my work in Germany, I was working in Germany and I’d, because I was a free, on a contract, I was a freelancer, I had, they were very much aware of my mother’s situation and they’d said to me whatever time you need to take off to support your mum, you know, that’s fine. I had sort of tried to sort of speak to my doctor to find out at what stage things would get worse for my mother, and then I’d sort of made the decision when I thought that, you know, the doctor was sort of saying, you know, it’s been nine months now and, you know, she is starting to deteriorate. I had made the decision that that next month I wanted to spend with my mum, so I told them at work and they were, they said whatever time you need. I said, “You know, the next month I want to just spend that month with my mum because I feel that we are probably coming to the final stages now of her cancer.”

So I had, you know, it was great for me to be able to not have the, because that’s the hardest thing, having to deal with the stresses of your work commitments plus, you know, the bigger stress of, you know, trying to keep your mother alive and also wanting to just spend those last few moments, you know, with your mother as well, and doing what you can to make her last few months on this earth as comfortable as possible.


Saba did not fully understand her mother’s diagnosis until she looked up certain medical words on...


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. Had no information. 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 look 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. How, how did we get from there to here so quickly with nothing in between and no consultation?


Saba and her father fought for help to care for her mother, but this was denied time and time again.


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 Nurse 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.

I felt that a lot of the time was taken up fighting to get proper care for my mum, and fighting just to get things on a day to day basis, to even get the doctor to come out and see her when she had a symptom that we couldn’t deal with, because you still had to go through the same process as somebody that’s got a common cold. You still have to wait as long. You still have to go to the surgery, or if you can’t go then you have to wait for the doctor to have time to come to see you. So sometimes she couldn’t come on that same day, she’d come the next day.


Saba’s mother chose to go to a hospice where she had received good care before. Saba was relieved...


They just sort of said that, you know, she sort of said to me, I really, you know, feel and she … you need, we need to get her out of hospital now. And they said that the hospice had offered to take her back this week, which I was so relieved at because I knew that one place. And we, they said, “You know it’s up to you, do you want her to go to the hospice or do you want her to go home, you have to make that decision now”. And I knew at that stage that this was it. And I said, “I need to speak to my mother”. I didn’t say… at no stage did we say to my mother that this is it, this is it, this is the final stage.

And I said to my mum, “That they’re going to let you out of hospital, you know, you can either go to the hospice or you can come home”. We didn’t tell her that she was going to die at this stage. And my mother said to me, “You know, I want to go to the hospice”. And I felt relieved and I felt that she felt relieved that she felt like she was going home, for her, because I think she knew at that stage that the amount of care that was going to get, she would get it from the hospice. And she could see the struggles that we’d been under, though at no point do we ever make it feel to her that she was a burden to us. And you could just sort of see the relief on her face that she felt.

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