Alison - Interview 02

Age at interview: 44

Age at diagnosis: 41

Brief Outline:

In 2007 Alison was diagnosed with pancreatic cancer. She had surgery followed by chemotherapy and then chemoradiotherapy. She is now feeling well and is positive about the future.

Background:

Alison is married and has 2 children. She is a PhD student. Ethnic background/Nationality: White British.

More about me...

In July 2007 Alison had pain in the middle of her back. Then she started having pain in her tummy, especially when eating. She had some bloating and did not feel like eating as much. She also thinks her poo smelt slightly different to normal.

After about two weeks with the pain, Alison went to her GP. The GP thought she might have either irritable bowel syndrome, or dyspepsia. Blood tests were normal.

The pain got worse and another doctor suggested she might have pancreatitis. Alison went to the local A & E department. There, another doctor suggested she had gall stones. Alison went back to her GP who said she should have an ultrasound scan. The NHS had a four-week waiting list for the scan.

By this time Alison’s pain was severe. She needed morphine patches to control the pain and was finding it impossible to sleep without anti-inflammatory suppositories. Because of NHS waiting lists for scans she decided to seek help privately and saw a consultant, who enabled her to have an ultrasound scan immediately. This was followed by a CT scan, which showed that there was a mass on her pancreas. Surgery was scheduled for the following week.

Alison was admitted to a private hospital, where she had a laparoscopy to make sure that the tumour had not spread. Having checked that there were no secondary tumours, the surgeon went straight on to remove 80% of her pancreas and her spleen.  

Alison had an adenocarcinoma with one lymph node affected too. She had suspected that she had cancer so when the surgeon gave her the diagnosis she wasn’t entirely surprised. She said that the diagnosis was ‘shocking, but it wasn’t a shock’.

Alison spent 10 days in hospital. She had a catheter, drains, and drips, but was not in pain because she had an epidural (a pain killer injected into the spine). She was allowed to eat after about three days but found it hard at first. She also developed Type 2 diabetes, which doctors were able to control with medicines. She was able to go home, taking paracetamol for discomfort, medicines for diabetes, and antibiotics to prevent infections (because her spleen had been removed).

Family and friends were very supportive. The most difficult task was telling the children about the diagnosis and about what had happened.

Alison had six months of chemotherapy and the side effects were not as bad as she expected. Alison didn’t lose her hair but the drugs caused some nerve damage and early menopause. She took HRT for the menopause symptoms.

Alison had a month without treatment and went on holiday. Then she had chemoradiotherapy. This meant having a drug (5FU) via a central line, and daily radiotherapy for six weeks on weekdays (radiotherapy treatment stopped at weekends).

The radiotherapy made her feel very tired. She had inflammation of the stomach and oesophagus (food pipe), which made eating painful. She was given medicine which cured this.

The treatment all finished in July 2008. Since then, Alison has had regular follow-up appointments with her medical oncologist. At first, she had 3 monthly CT scans. The last CT scan was in July 2009, which showed that she is disease free. Alison feels well and is positive about the future.

 Alison was interviewed in 2009  

At first Alison had pain in her back. Later she had abdominal pain and felt bloated. Her GP thought the pain might be due to wind, and diagnosed IBS.

I was diagnosed in August 2007 with pancreatic cancer. And up until about a month before I thought I was fit and well. I got the first symptoms, which were backache and then abdominal pain which got increasingly worse, pain when eating. And I continually went to the GP, was diagnosed initially with IBS, irritable bowel syndrome or dyspepsia and given all sorts of painkillers, drugs etc, none of which worked. Eventually I had an after-hours doctor out, who came the closest by suggesting pancreatitis, who gave me morphine for the, as the pain was so severe by then.

 

I was first aware of, of my symptoms through the backache. And it was like, I couldn’t get comfortable in a chair, and it was almost as if someone had strapped a tennis ball to the middle of my back. And, and it was the middle of my back, close to my spine. So it wasn’t in the lumbar region where you get backache if you’ve strained whilst lifting something, and it wasn’t up in the shoulder. It was certainly in the middle and it was close to the spinal area. And I think it was probably due to the tumour itself pressing on the spinal nerves.

 

Most of Alison's friends were supportive and offered practical help, but a few 'broke down' when they heard the diagnosis, which Alison found difficult.

I mean some people would not want to talk about it, be really practical, offer sort of, “What can we do? How can we help on a practical level?” and not want to discuss what’s been going on. Possibly because they didn’t want, didn’t know how to talk about it with you. Other people would, as I said before, would, would break down and, “I don’t know how you’re dealing with this” I found very difficult to take. And, you know, mostly though I found that people have been incredible, incredibly supportive, incredibly kind….. Yes, most people have been incredibly supportive, incredibly kind and ……Yes, I mean other people, I mean some people have been very practical with their help and don’t want to discuss it. I’ve had people even within the family who haven’t wanted to discuss any details. And that’s fine. But, on the whole most people have been incredibly supportive. A lot of them, especially friends of my own age, incredibly shocked. Most people expect you to have had breast cancer if you’re my age. So the pancreatic thing was just, “Where did that come from?” And they didn’t know an awful lot about it. And a few people, when I was diagnosed, looked it up on the Internet and they were very, very shocked at the statistics and, and were really fearing for, for me, though they didn’t say so at the time. No, they, they did.

Alison had a distal pancreatectomy and splenectomy. She was out of hospital after ten days and then needed only paracetamol for pain control.

Yes, the surgery was quite lengthy. It was, it was about five hours. I had, my tumour was sited in the body of my pancreas, so I had 80% per cent of my pancreas removed along with the spleen in, in the one operation. And that’s called a distal pancreatectomy and splenectomy. And that operation went very well. The consultant surgeon got out all the tumour that he could see, and the histology came back that it was an adenocarcinoma in the body of the pancreas and one lymph node, node was affected. So I recovered pretty well actually from the surgery. I think probably because of my age and also I was relatively fit before I went in with all of this. So I was up and about pretty quickly and I was out of hospital within ten days.

 

Did you have an epidural?

 

Yes, yes. But I wasn’t in any pain. And they weaned me off the painkillers actually pretty quickly. And remarkably at the end of it I was sent home with paracetamol. So even though I had a wound which pulled and, you know, the discomfort that that caused, the, the, the actual searing pain that I had before was gone. I was like a new woman. So that, that was, that was brilliant.

 

 

Alison had gemcitabine and cisplatin. The cisplatin caused peripheral neuropathy. She had an early menopause, but it did not suppress libido.

So, and I, to be honest, the chemotherapy itself, I felt like I’d been run over by a truck the night after I, I had it. It was intravenous chemotherapy, two drugs given on the one day. So it was the whole day, essentially, spent in, in hospital as an outpatient. But I came home and would have a light tea and I’d go to bed early, and really not feel that bad, the next morning amazingly. I thought I’d be as sick as a dog, but I wasn’t. And I’ve got a whole stack of anti-emetics, which are the anti-sickness tablets, that are still in the cupboard. I don’t know whether I should give those to somebody [laugh]. But I didn’t use them, because I didn’t have to. So that was, so that was great. I’m not saying that it was a, a ball by any stretch, but it wasn’t as bad as I’d imagined it to be. So, and I’ve still got a few, well, probably only really one main side effect from, from, well, a couple of side effects from the chemotherapy. And that’s, one of them is I had a platinum drug, which means I now have something that’s called peripheral neuropathy. And it means that when it gets very cold I can lose the, the feeling in my fingers. And doing up buttons in December can be a bit tricky. And standing on cold platforms and things like that on the way to work can aggravate it. But, and the other thing is the early onset menopause that’s happened as a result of the chemotherapy treatment. But apart from that I haven’t got anything.

 

Has it been tough dealing with the early onset menopause?

 

It’s just another one of those things that you have to deal with. And it, it’s, you shouldn’t get angry about it but, because I’m still here, I should be ha-, happy about that, but it’s a frustration. And it does awaken some emotions in you, mainly because your hormone imbalance is going up and down. 

 

I guess your sex life is affected too?

 

Yes, funnily enough, it’s not been so bad. I mean it’s, I think the emotional strain of, of having the cancer, and everything. I wouldn’t link that to the menopause in particular. But in a funny kind of a way the, the chemotherapy treatment, should I say this on, on video, did wonders for, for that aspect of, of my life when it shouldn’t have done. It was, it’s supposed to suppress libido, and with me it didn’t. 

 

After her surgery Alison had adjuvant chemotherapy. Then she had adjuvant chemoradiotherapy. She described what having radiotherapy was like.

I’d gone six months, so we’re now into March. And I had a month off, and we went away on holiday. And came back from that and I was referred to a consultant clinical oncologist. And he prescribed for me roughly six weeks’ worth of chemoradiotherapy. Now that involved having a, a drug called 5FU in a pump which was attached to what’s called a Groshong line, which is a c-, a central line that, that goes into your chest and it delivers the chemotherapy on a 24/7 basis. So you’ve got the pump with you continually. And that was changed once a week in clinic. So, which actually I decided to do myself, because I couldn’t be bothered [laugh] to go back up to the, to the, the clinic to do, and I was given all the kit to do that in a sterile environment. But, yes, and, and included in that was daily sessions of radiotherapy, which are, which are actually done at the NHS unit locally, but as a private patient. 

 

What was the radiotherapy like?

 

It wasn’t painful at all. Beforehand I had to go in for some scans, so that they can perfectly align where they were going to focus the beam. And I had to have some mini tattoos put on me. And the radiotherapy went in three sides, so the middle and then the two sides. And I’ve got three nice little dots to show them where they were going to line the machine up. So it’s, it’s not quite a, a dragon or a butterfly or anything like that. And it, you certainly don’t notice it now. But the process itself, it was only for ten minutes but I had, I had to lie very, very still. And it’s amazing, when you’re trying to lie still you think about not moving and you can’t wait to move. And it’s, it’s really difficult. And, you know, it, it, it doesn’t hurt at all. And you just hear sort of the zapping and the clunking of the machine and, as it’s rotating around you. And that I found worse than the chemotherapy regime I’d been on. The side effects of that were mainly exhaustion.

 

Alison had radiotherapy every day for six weeks, except for weekends. She became extremely tired and developed gastritis.

And, but the first sort of three weeks or so I was absolutely fine. I was running round all over the place, going to watch my son play cricket and, and doing normal stuff and thinking, “Oh, this isn’t too bad.” And then all of a sudden it, it hit me. And the extreme tiredness was just, just amazing. And by the end of it I was really dragging myself in. In fact I wasn’t driving myself in any more.

 

How many weeks did that go on for?

 

That was six weeks.

 

Once a week?

 

One, no, that was every day.

 

Every day?

 

Except for weekends. I got weekends off.

 

Did you have any other side effects apart from exhaustion?

 

I did. I had, it happened later on, but I actually got gastritis because of the area that they were focusing the beam on. So it’s like an ulceration in the oesophagus. So it was actually causing pain on eating and I had to have drugs to, to combat that…

 

I was given a drug to take which I think provides a coating, and that eased the, the pain. So I had pain on eating. So I had actually continued to lose weight through the chemotherapy treatments and I really didn’t want to lose any more weight. So not being able to eat again was, was something I wanted to avoid. So, but it was cleared up pretty quickly. My consultant got on the case soon enough and that was cleared. And I have, sometimes that flares up again. If I’ve eaten something spicy it aggravates it. So, but I know what to do. So I just dose myself up with the drug again and, and in a couple of days I’m fine.

 

Alison was aware of the variation in follow-up and understood the arguments for and against regular CT scans. She asked for a scan to give her reassurance that all was well.

So which consultant do you go back and see regularly?

 

I’m now back with my medical oncologist. And he’s reviewing me currently every three months.

 

This is the NHS?

 

Still private.

 

But I did have a bit of an issue in terms of follow-up scans. Because he took the decision not to scan me after I’d finished my [treatment]. I’d finished my treatment and then the November of last year I had a scan, and after that he decided just to see how I was feeling. And then if I wasn’t feeling good then maybe we’d do another scan. And initially I was, “Okay, that’s fine.” But I discovered that other people were being scanned on a more regular basis, and I was just wondering why I wasn’t being scanned on a regular basis. And I think it was to protect me, because the scans themselves are incredibly stressful. Well, not actually the scans themselves. It’s waiting for the results of the scans for me are terribly stressful, and my consultant’s very aware of that. And I’m a bit like a jelly when I walk into his office. 

 

Did you ask him why you weren’t having as many scans as other people?

 

Well, he seemed to think that there wasn’t an exact protocol for this and that I really was probably being scanned as much as everybody else. But I think it varies so much. Being involved with pancreatic cancer charities and meeting other people, I’ve actually found that there’s great variation up and down the country in terms of how people are followed up. And it really depends on the, the, the local consultant and how he or she wants to deal with it, and possibly how the patient wants to deal with it as well, to be fair. And to be fair to my oncologist as well, he’s always said, “Look, if you want a scan, I’ll do one, absolutely no problem.”

 

Did he ever say there’s any problem with any side effects of the scan, any, too much radiation or anything?

 

He’s not really said that. What he, I think he said was that really if they find something else, like a secondary in the liver or the lung or elsewhere, then with the unfortunate nature of pancreatic cancer there’s not an awful lot that can be done in, in terms of a curative option. So I think his thinking was that while I’m feeling well and I’m doing well, clearly if there’s something small that might be happening that might only be picked up on a scan but I’m feeling okay, then I won’t have the worry of, “Oh, it’s come back.” But that’s a double-edged sword really, because by not having the scan [laugh] I was wondering, “Is there anything there?” anyway. So I sort of needed that, that reassurance. So I sort of went into battle a little bit and just said, “Look, everyone else seems to be scanned more often than me. Why?” And so he agreed to, to scan me again. And I was scanned in July and thankfully everything was normal. But that was a very tense moment.

 

Alison cut out most refined sugars because she had developed diabetes. She found red meat hard to digest and cut it out.

Have you had to adjust your diet?

 

Yes, I’m now confirmed diabetic and I have adjusted my diet. I mean luckily I didn’t have a, much of a sweet tooth before. But I’ve cut out the majority of refined sugars. I don’t eat sweets or biscuits or cakes or anything like that that contain sugar. So I’ve completely cut it out of, out of my diet. And that hasn’t been too difficult for me to deal with. I think if my husband tried to do that, he’s got a bit of an addiction for chocolate digestives, so if he tried to do it, it would be a nightmare. But for me it was quite easy.

 

Have you changed your lifestyle a lot, partly because of your diabetes?

 

The diabetes, initially with the diet definitely. I mean that was an overnight thing. I found that I was unable to digest red meat terribly well, and I gradually got that out of my diet. And then I gradually just decided I wasn’t going to eat meat full stop. Because it’s a lot easier when you’re invited to a dinner party and, you know, people always ask you, “Is there anything you can’t eat?” And I think, “Right, well, I’ve got a whole list.” So I didn’t want to be one of these really annoying people that, “Oh, goodness me, she’s really fussy.” So I just, it’s easier to just sort of cut it out. So that’s what I’ve done. So I eat fish and, and seafood and mostly vegetables. But I think that’s a pretty healthy diet anyway.

 

How long did it take you to get back to work again? How long were you not doing anything at all?

 

It was almost exactly a year. Because I had my surgery, 2007 in September and I started the PhD in October 2008. So it was a year.

 

Before each of her chemotherapy treatments Alison had her weight and blood pressure checked and had blood tests.

And was that, were the hospital surroundings and the treatment all right?

 

Yes, yes. It was a private hospital, and it was a nice clinic. There were oncology specialist nurses there, as well as nurses who dealt specifically with chemotherapy. And my consultant had his clinic on a, on a certain day in the morning. You’d go in and you’d have, you’d be weighed and have your blood pressure done, and then you’d have your bloods checked to see that everything was, was all right. Mainly your neutrophil count they’re, they’re looking at, to, to ensure that the chemotherapy wasn’t actually zapping you of your resources as it were. And if that was all fine, they also checked the cancer marker on a monthly basis as well, but if that was fine, then they’d go ahead with the chemotherapy. And it took I’d say from start to finish, I’d usually go in for about 9 o’clock and I’d be out by about 4.

 

A long day.

 

So it was a long day. But I had my own private room, so I could take my laptop in, I could read. I could do my own thing.