Steve - Interview 14

Age at interview: 47

Age at diagnosis: 47

Brief Outline:

In 2009 Steve was diagnosed with pancreatic cancer. He had chemotherapy and radiotherapy to shrink the tumour, but the tumour remained too close to major blood vessels, so was inoperable. Steve feels quite well but knows he has a terminal illness.

Background:

Steve is an office worker (retired due to ill health). He is married. Nationality/ethnic background: White British.

More about me...

In March 2009 Steve had a full medical examination and eye check before he went back Cyprus where he and his wife worked. The results were normal.

In April 2009 Steve and his wife went back to Cyprus. In mid-May Steve had some strange symptoms. His vision went a bit blurry and he started to get leg cramps at night. He also felt very thirsty. He went to see an ophthalmologist, who couldn't see anything wrong with his eyes.

 

In June a blood test showed that Steve's blood sugar was very high and that he did have Type 2 diabetes. Steve started taking medicines for diabetes, but then he became jaundice, so he was referred to a gastroenterologist.

 

The gastroenterologist said that Steve should have an ultrasound. this didn't show anything so he had an MRI scan. This showed that Steve had a tumour at the head of his pancreas. It was pressing on the bile duct and so causing the jaundice and diabetes. The doctor also told Steve that he needed to return to the UK to get specialist help. By this time Steve felt very unwell and had an itchy skin. He and his wife had to pack up what they could in Cyprus before getting on a plane to return to the UK. They flew back in July.

 

Two days later Steve was admitted to a local hospital. There Steve was told that he had Type 1 diabetes so had to have regular injections of insulin. He also had a CT scan, which confirmed the tumour.

 

The surgeon decided to put in stent to keep Steve’s bile duct open. This was done during a procedure called an endoscopic retrograde cholangio pancreatography (ERCP). The doctor did a biopsy at the same time. The stent helped with the jaundice and quickly made Steve feel much better.

 

The surgeon told Steve that he had an adenocarcinoma, which would be hard to remove because it was wrapped round a major blood vessel. This was devastating news for Steve and all his family. After a few days in hospital, Steve went home.

 

The surgeon referred Steve to an oncologist. The plan was that Steve should have combined chemotherapy and radiotherapy in order to shrink the tumour. If the tumour shrank enough then a Whipple’s operation might be possible.

 

In August 2009 Steve started a five week course of chemotherapy. He had radiotherapy at the same time. Steve was given cisplatin from an IV and capecitabine by mouth. The side effects of the chemotherapy were not too bad. Steve had more discomfort from the radiotherapy. He felt very tired and after the radiotherapy finished he felt sick on a couple of occasions.

 

During this time Steve thought about having the Whipple’s operation. He was not convinced that he would have the surgery even if it were possible. He knew that it was a major operation, which needed a long period for recovery, and that the cancer was quite likely to return after surgery. However, Steve never had to make that decision. The chemotherapy and radiotherapy did not shrink the tumour enough to make the Whipple’s operation possible.

 

Steve had a CT scan about six weeks after the chemotherapy and radiotherapy finished and it showed that the tumour was still too close to major blood vessels to allow surgery. On 19th November 2009 the surgeon gave Steve and his wife the devastating news  that his cancer was terminal. There was a Macmillan nurse in the room at the same time, who explained that support and pain relief would be available when the disease progressed.

 

At the moment Steve is feeling quite well and he is enjoying life. He takes insulin for his diabetes. He also takes Creon after meals to help with digestion. He eats whatever he wants to eat and he goes out, drives his car and his motor bike and has holidays. He feels a bit tired at times. He has had to retire from work due to his terminal illness. This was hard for him because he is only 47 years old. He does some voluntary work two days a week. Steve has had wonderful support from family, friends and his church.

 

Steve feels he has come to terms with his condition. Obviously he is sad that he has a terminal illness, but he has a strong Christian faith so says he does not fear death. He fears the process of dying but not death itself. He feels reassured partly because he has a very good GP and a Macmillan nurse who answers his questions honestly and who has reassured him that he will receive good palliative care.

 

Steve is not having any other treatment at the moment. He sees his oncologist about every three months. If he develops symptoms he may have some more chemotherapy or radiotherapy as part of palliative care. He knows that treatment will not cure his condition, and he thinks that he may only have months to live.

 

We spoke to Steve in 2010

Steve and his wife went to a quiet room. The consultant drew pictures of Steve's internal organs, explained about the stent and discussed treatment options.

One thing I did ask him to do was, I was on a ward of about half a dozen other people, and I asked if I, if my wife and I could go with him and sit in a quiet room rather than discussing it where I knew other people would be listening in. And I found that quite helpful.

 

I think that was out of the ordinary and it took a minute or so to find a room you know, we had to walk around until we found somewhere, but I would encourage people not to feel they, they had to receive bad news at the convenience of the medical staff. Make sure you’re, you feel comfortable about where you receive the news and how it’s delivered to you. If you have the chance, certainly to make things private. That helped me. The thought of discussing possibly a terminal condition when other people were listening in was not welcome to me. 

 

So, he was very good, the surgeon took us into a quiet room and explained it to us. In fact he was very careful to take time to, he actually drew a little sketch for us, he used coloured pens on a piece of paper, and he said, “This is your pancreas, and this is your bile duct,” and he drew all these elements of my, my guts, my inside to try to explain it as fully as possible. And he explained about the stent, what that would do for me. And he also outlined the possibility of what’s called a Whipple’s operation, as I’ve already referred to.

 

Steve found it hard to tell his mother, sister and brother that he was going to die but decided to be open and honest with people.

How have family members coped with this knowledge that they’re going to lose you one day?

 

Ah it’s hard I think. 

 

Only talk about it if you want to?

 

Yes, I can’t speak for them, but it’s very hard to talk about such things with your mother, your sister, with your brother. But I think it’s helpful for me to be brutally honest. I’ve wanted to be honest with people from the beginning and tell them not, not wrap things up and try and use euphemisms or pretend that something’s not the way it is. 

 

At each stage I’ve tried to explain things fully to them and said, “This could happen, or this could happen.” And at, of course at one point I had to say, “I went to see the surgeon today. I’m afraid he told me I’m going to die.”

 

And I found it helpful just to be honest and open with people so there aren’t any hidden agendas or people, you don’t have to pretend. It’s a lot easier I think that way. Mm.

 

 

Steve had a stent inserted to relieve his jaundice. He felt much better after the procedure. The surgeon did a biopsy at the same time.

And they confirmed that yes the bile duct was blocked and it was explained that the, the usual treatment for this is something called a stent. And a stent is in my layman’s language is a an expanding tube which can be fed into the bile duct and when it’s in the right place it pops open, and it immediately forces the bile duct back open and allows all that nasty stuff which is supposed to be digesting your food, out of your pancreas, out of your bile duct and back where it’s supposed to be inside your body.

 

This is done by inserting a tube down your throat. The, the procedure is called an ERCP, I can never remember what that stands for. It’s a very long complicated name but it’s a tube that they feed down your throat, and they can actually steer it all the way into the bile duct, and a surgeon does this for you. It’s not a comfortable procedure, you lie on your side, and she sprays something on the back of your throat to numb the back of your throat to stop you gagging and trying, trying to resist this tube. And you have a general anaesthetic so you drift off to sleep. When you come round you, your throat feels quite sore because it’s had this tube down it and you feel groggy from the effects of the anaesthesia.

 

So you had an anaesthetic, rather than a sedative?

 

It was a sedative, but in effect I fell asleep and I was out for, for a good while, yes, heavily sedated I suppose you would call it. When I woke up I didn’t feel very well, I was in considerable pain from…, I had a bad back, or what felt like a bad back. And this is because the pancreas is inflamed and other organs around that area are quite sore, and there’s some discomfort from a sore throat as well. So I was actually given a painkiller to deal with that. That took a while to arrive which was unfortunate. They have to get permission to give you the painkiller. It was actually given to me intravenously which I didn’t react well to, and it made me feel immediately nauseous, which was a very uncomfortable feeling, but that, that did pass quite quickly.

 

Did they do a biopsy at the same time?

 

Yes they did, they take, a biopsy is a little scraping, they take a little bit of the tumour, remember it’s just a, they call it a tumour at this stage, and that goes off for testing. So at this stage I’m still not, I haven’t had a confirmed diagnosis of cancer as such, they are still dealing with a tumour.

 

So within a very short time this stent, it’s marvellous because the jaundice starts to disappear and your yellowness starts to fade, your eyes become white instead of yellow, the rash stops forming and you no longer feel very itchy. So great relief after probably, yes, over a week of being very uncomfortable with the jaundice, it starts to fade over the course of maybe 48 hours. And rather than being quite unwell within probably 48 hours, I was able to be up and about and doing, and I actually was able to leave the hospital for a couple of hours, go out and have a meal out and get a break from the hospital and feeling unwell, and hospitalised in a hospital is not a very nice place to be at the best of times. So yes I would say a stent, a stent is a, is a marvellous thing.

 

Steve had neo-adjuvant chemoradiotherapy. His doctors wanted to shrink his tumour, hoping to make potentially curative surgery possible.

So in a very short space of time, just a matter of a week or so I was able to speak with the oncologist who recommended a treatment of, it’s actually called cisplatin, which is a chemotherapy drug which is administered through a drip and that was done, and it happens over the course of a whole day, you go into a day ward and you have the cisplatin through an infusion. And also an oral chemotherapy drug, one that I would have, I think it was three times a day with a meal, you’d swallow this big tablet. And at the same time each weekday I would go for radiotherapy. So that regime was outlined and that was over I think it was five or six weeks, this regime would take place.

So around yes six weeks after returning to the , I started this regime of chemo and radiotherapy and all the time in the back of my mind is, “I wonder if this Whipple’s operation is going to be a possibility.” The things on my mind to do with that were, I knew I had read that the, the prognosis for pancreatic cancer is very grim. The statistics say that you only have a two or three percent possibility of living beyond five years. That the headline statistics tell us that. Everybody’s different, so fortunately some people will live much longer than that. Others, their condition may have been caught quite late, and they may only have a matter of months, maybe even weeks to live. And I didn’t know which category I fell in of course.

Steve gave himself an injection of insulin before each meal. He had another injection before going to bed.

The only regular medication I have now is I have insulin with each meal, which helps to deal with the sugar high of your digested food as you consume that food. And I also take Creon.

 

And that’s because the pancreas has been affected by the growth?

 

Yes, because the effectiveness of the pancreas is compromised by the disease. There’s less of the pancreas to produce the chemicals in your body to deal with the blood sugar.

 

So I have to live with diabetes. I take insulin, inject myself before each meal, breakfast, lunch and an evening meal. And then I have at night, before I go to sleep I have another type of insulin which is long lasting, 24 hour cover, and that’s designed to keep all my sugar levels down a little bit, so that the meal time insulin just deals with any spike. So the regime, I’ve adapted to that quite easy. 

 

Steve considered only ‘clinically proven' treatments. He felt complementary therapies might be...

Have you ever tried any, or thought about trying any complementary therapies?

 

No. Actually that’s something I will be quite clear about in my mind, I would only consider medication which is clinically proven, has been through tests and protocols etc etc. I would very much take the view that conventional medicine would be the right course for me. I think a lot of people get hooked up on all sorts of weird and wonderful things, which are at best unhelpful, at worst expensive, and possibly are even damaging. 

 

I feel quite sorry for people who search desperately for every possible alternative, crushed this, that and the other, or infusions of the other. No, I, that’s not for me at all.

 

Steve's Macmillan nurse helped him obtain Disability Living Allowance, and answered his questions about issues he might face at the end of life.

The Macmillan nurse talked through end of life issues, we’ve been able to talk with her honestly about how it might be to feel unwell. But to be honest we met the Macmillan nurse in the hospital and subsequently the Macmillan nurse has visited us here in our home a couple of times. The first time was to talk about the fact that I was now diagnosed with a terminal illness. The second time was to help us with the DLA [Disability Living Allowance] application. But really we were able to say to her, we don’t feel the need to speak to you regularly at this stage because I’m not unwell yet, but I think when I start to feel more unwell then I’ll certainly pick up the phone to her and say, “Look things are getting a bit worse, you know, would you come round and see me and let, reassure me that this is normal. That, you know, this is expected maybe.”

 

And I feel very reassured that I’ve got a good GP and that the Macmillan nurse is there to talk to, to be honest, and say you know, “What is it going to be like to be seriously ill, to be dying? To actually you know be bed bound?” Or I feel reassured that I can actually ask people you know, “What would it feel like to be dying?” That’s very reassuring to me. To be able to talk to people honestly and frankly about it.

 

Steve was reconciled to being terminally ill. His strong Christian faith helped him. He felt quite well and still enjoyed life.

There is a psychological aspect to the illness. And that is being reconciled to being terminally ill. I feel I’m quite reconciled to this condition. And I think there are two reasons for that, firstly because I have a strong Christian faith, and both my wife and I have that. And we have a very supportive local church, and that helps me because I don’t have an intellectual fear of death. I personally feel there’s something beyond. And I have a firm assurance in my own mind that I will go to a better place. That helps psychologically. I have a fear of the process of dying; I’m not looking forward to dying at all, but having a Christian faith helps. 

 

The other reason why it’s perhaps easier to live with the condition, my terminal diagnosis, is because at the moment I’m quite well. There’s nothing that much wrong with me. I’m enjoying life. In some senses life’s quite easy because I’m not having to go out to work every day so I’m enjoying life, life’s quite relaxed and I suppose from that point of view day to day, it’s not, not so bad.

 

Yes, I’m enjoying life. I now savour small things quite a lot, the simple things like we feed the birds out in the garden and I get pleasure out of that. And I’ve said about enjoying riding my motor bike when I get the chance and so on, so yes you can, you can enjoy again simple pleasures in life and the fact that I can eat delights me, I enjoy that. Yes, you do savour those little things.