Maureen - Interview 18

Age at interview: 64

Age at diagnosis: 63

Brief Outline:

Maureen was diagnosed with pancreatic cancer 4 months ago after having abdominal pain and digestive problems. She is having chemotherapy (capecitabine and gemcitabine), which is shrinking the tumour, and hopes to go on to have an operation to remove it.

Background:

Maureen is a retired therapeutic counsellor; she is married with 3 adult children. Ethnic background: White British.

More about me...

Two years before we spoke to Maureen, she was having sickness, diarrhoea and stomach pains and was diagnosed with irritable bowel syndrome (IBS).The symptoms continued to affect her for a few days each month but she got on with her life.

 

A year later she went for a routine private health check and was given a clean bill of health. A few weeks later she felt uncomfortable but put it down to having eaten rich food at first. But then her tummy pains changed and she thought that something was wrong.

 

Her GP thought she might have acid reflux and prescribed medicine but this didn't help at all. The GP then suggested she had pulled a muscle and that it would heal itself. After a few weeks there was no improvement so she went back and asked to be referred to a specialist. The consultant sent her for tests that showed a tumour on her pancreas and another on her liver.

 

She couldn't have surgery because the tumour was too close to a main artery, but was told that chemotherapy might shrink the tumour enough to make surgery possible. The oncologist (cancer doctor) looked at the endoscopy result and thought the tumour might be too big. She told Maureen that there was only a one-in-three chance that the tumour would respond at all to the chemotherapy but that this was her only option.

 

The chemotherapy consisted of 3 cycles of 21 days of capecitabine tablets taken at home plus intravenous (into Maureen's veins) gemcitabine on days one, eight and fifteen as an outpatient at the hospital. Maureen had an allergic reaction that caused a rash on her torso and thighs, and side effects causing her hands and feet to swell and turn red. Maureen had the tablets reduced and the intravenous injections delayed.

 

For the 2^nd cycle of chemotherapy she was given steroids and antihistamines before the gemcitabine, which helped, but she had to stop the tablets before the end of the 3^rd cycle. After the 3^rd month she had a CT scan which showed that the tumour had shrunk. She continued with the treatment but took the tablets for only 14 days rather than 21. She was told that if they could achieve a bit more shrinkage she would be able to have surgery after all.

 

Maureen was determined to keep going with the chemotherapy. She was using a variety of strategies to manage her side effects but could stop the treatment if the side effects became too much. She set herself a goal of having her surgery before her new grandchild was born.

 

Maureen has lots of support from friends and family. All her care has been provided privately and funded through a health insurance policy.

We spoke to Maureen in 2010 

After the initial shock Maureen felt as if she was going through a bereavement. Life would never be the same again. Now she feels more positive.

So it was quite a shock to actually look at the, the scan itself and see, not that it, if I’m honest, it really meant masses to me. But he described it and explained that because it was extending over the main artery there was no way they could operate, because they can’t touch that main artery. So we were sort of left stuck for a few moments, but then he explained to us that although an operation then chemotherapy is the preferred route, there is an alternative and that is chemotherapy and then an operation, and that, this would be fine. Although it’s not the preferred route, it’s a tried and tested route, so no problem. Have the chemotherapy and then I’ll do the operation. 

 

One thing I would say that I did feel at the very beginning, of being diagnosed, is that I suffered a bereavement, because this is a change in my life. This is a, an enormous change. Life as I had known it would never be the same again. So I felt that I was going through a bereavement and, again fortunately for me, having done lots of training etc., that I could understand how this was. I started out with the disbelief, you know, went through that, “I don’t believe it’s happening, it’s not happening to me”, to the anger. I do remember a long, long time ago somebody, reading something or somewhere of people who things happen to say, “Why me?”, and then them saying, “Well, why not you?” So I did take that view. “Well, OK, it’s me”, you know, “Why not me?” I didn’t go down the road of, road of “Why me?” But I did get angry, and think, “I don’t want this.”  But I moved, and I realised in time that I was going through the process that one goes through with a bereavement. And it is, it’s because it is, as I say, life will never be what it was. But then I do also believe life changes all the time and that’s no bad thing. But I would certainly would rather have not be down this road, but I certainly feel now that the road I’m on, and the road I believe I’m, I should be on, is the road to recovery. So that’s where I’m staying.

 

Maureen had a bad reaction to chemotherapy. Her hands and feet became raw and painful (hand-foot syndrome). She had mouth ulcers and her hair thinned.

Anyway I carried on with the tablets. They then gave me this terrible side effect of; it’s called hands and feet syndrome, where my hands and feet not only swelled but they, they looked as if I’d put them in pots of red paint, it was like they’d been burnt. And it’s all the swellings, I couldn’t even bend even one bit of my fingers at all. I couldn’t put one step in front of the other without it being really, really painful. So when I went back to see the consultant she actually reduced the, the tablets. And also wouldn’t give me the second and third intravenous. But we had a discussion and she gave me options as to what they call then, ‘re-challenge’, so I go back onto the same drug. And having been told this was the gold standard drug, and that the option would be to go onto a drug that was designed for bowel cancer, I really, really wanted to stay with the one that was designed for pancreatic cancer. What the consultant came up with was to give me some steroid tablets on the night before and then a steroid injection and a piriton injection before having the gemcitabine, which is what we did for the second cycle and thankfully it worked. And although I get some effects from the other drugs, you know, it has meant that my body has tolerated the chemotherapy. So that was a, a big relief and I was pleased to do that. 

 

The … by the time I’d got to the third month, my hands and feet, I’d, I’d spent nine days sitting on the sofa because I couldn’t hardly walk and I couldn’t use my hands. So the oncologist decided to not only reduce but to stop the tablets for that last month.

 

It does affect my mouth as well. It gets full of ulcers and that, which again is really quite sore. But I’ve, I’ve resourced, researched what I need to have and I’ve got in place, taking B6 to help my hands and feet, getting some creams to keep them as, as moist as possible, having a mouthwash to help with mouth ulcers. So I’ve got in place everything that I need to have in that sense to look after my body. 

 

The one thing I haven’t spoken about which I’ve just thought about is hair loss. And that happened fairly quickly. We’d moved in, it didn’t happen the first month, but the, by the time I’d got to the third month, and I was only taking the tablets and not having the intravenous, and one day I went in the shower and my hair was coming out. And for four days my hair just came out at a rate of knots. And I’d been told, “You won’t lose you hair but it will thin”. And I’ve got quite fine hair anyway, so losing a lot of hair over four days was quite traumatic [laughs]. So, but that just stopped. It, this sort of four, four days and then it just, it really sort of then just petered out. And I haven’t really had a lot of hair loss since then.

 

Maureen had a good relationship with her partner but while she was having chemotherapy the physical side of their relationship came to 'a standstill'.

What about the sexual side or your relationship? Would you be able to talk about that? Has there been any impact?

 

Yes, there has. I think it’s come to a standstill. Funnily enough, I’ve been thinking about that and thinking, I think part of that, well it’s definitely me, is because there’s like the fear of, I don’t know. Because this sort of alien thing is inside me, it’s like I don’t want to have any impact on it. It’s funny, it’s like going completely off it. But lifting things, it’s like I don’t want to put any pressure, any strain on it in, I don’t know [laughs] whether it’s got any impact on it or not. 

 

We have a very close physical relationship but at the moment sexually it is at a standstill. But I have been thinking, funnily enough, since we’ve sort of settled in here and thinking, “Well, you know, things are going on OK, I’m sure it’s not going to have any impact”. So, I’m sure, I mean, it will come back into being and I don’t’ have a problem with that. But we’re, we’re very tactile, and very cuddly and we still sit and hold hands on the sofa, which is something we’ve always done. So, so that closeness is there and, and I know that that side of our life will come back and, when, certainly as we’ve settled down into a routine of including cancer in, into our lives then I think that, you know, that’ll come back into our lives too. It doesn’t detract from our relationship because it is so close but it, it’s always an, an added benefit because it, you know, it, it’s a giving and sharing. So, yes, that will come back.

 

Maureen knows that her husband will be with her 'every step of the way'. But she also realises he needs her support just as she needs his.

Tell me a bit about the impact on your husband, how do think he’s coped? 

 

OK. Well we are very close. We are very, very close. We are, I don’t … we’ve just always worked so well as a team. And when it happened he said to me, “I will not be leaving your side. I will be with you every single step of the way”. It has absolutely terrified him the, the thought of losing me, being on his own. He’s not a person who likes to be on his own. But he is, he, he has really, really suffered, it has been really, really hard for him. But we’re doing it together. We try and say to one another, sometimes we’ll say, “Are you OK?” And, I say, “Yes, I’m fine.” And then, “Well, well actually, no I’m not.” [laughs] And, and vice versa. You know, there are times when I say, “Are you all right love?” And he’ll say, “Yes, yes, I’m fine.” And then he’ll go, “Well, no, I’m really, I feel really upset, you know, or I choke”. He is fully into all my treatment. He is visualising all the time. He visualises my tumour shrinking all the time. He fields calls, because sometimes I don’t really want to talk. So he answers the phone all the time. He’ll, he’ll do the emails and things to, to friends and keeps everybody in touch with, with how things are. And he is equally as amazed and delighted at the response.

 

We spend a lot of time, when we get these responses from people, shedding lots of tears [laughs]. But we, we have got a very, very close relationship and we support one another. I still, I, even though it’s me with the cancer, there are times when I need to support him. 

 

Maureen was grateful that the oncologist explained everything and treated her as an intelligent person. Maureen could phone for advice at any time.

And again, when I first saw the oncologist, because I think we went with a certain expectation and she wasn’t meeting that expectation. She came with a completely different view, and again it felt, you know, a really sort of, harsh, in your face, reality. And felt it was coming from someone who was very detached and well, you know, this is how it is and, you know [laughs].

 

But since then, since that happened, and I’ve, every time I’ve been to see her since, the relationship has, has grown and I’ve felt really supported, and, you know, cared for. And certainly, I mean, there is this thing, “I’m at the end of a phone”. You know, you know you’ve got someone here who’s, who’s got an obviously incredibly busy life, in what she does, very high up in her field, saying to you, “I’m at the end of a phone”, you know, “You can ring me any time”, which is an absolutely fantastic support to have. And you also get that with the nurses etc. in the oncology unit. There is always somebody that is at the end of a phone for you. But to, to have the oncologist herself say that to you, “You can ring me any time,” you know, makes you feel as if you, you matter. And, and I think that’s important to you.

 

You know, and certainly, as I say, the relationship has developed. And I understand nowadays, I think we’ve come a, a long way from, from being someone that lays in a bed and they, the staff come around the, and talk over you [laughs] and don’t tell you anything, to coming to the stage where they, I think you get everything explained to you. And sometimes that can feel quite, quite, quite heavy. But I think certainly better that way than, than having them sort of just talk over the top of you and you’re, you’re, you know, you’re just another patient instead of being a person. And it is good to be treated as a person and an intelligent person, you know, to understand what’s going on. And it’s good to be able to know that you can do that.