Richard - Interview 22

Age at interview: 59

Age at diagnosis: 58

Brief Outline:

Richard was diagnosed with pancreatic cancer in 2009. He had chemotherapy followed by chemoradiotherapy. In April 2010 a CT scan found small marks on his liver. He has had an MRI scan and is waiting for results. He feels tired at times but otherwise well.

Background:

Richard was a finance director for a multi-national company. He is now retired. He is divorced and has three children. Nationality/ethnic background: White British.

More about me...

 In March 2009 Richard had tummy pain, particularly at night. He tried some over-the-counter remedies, but these did not help. After about three weeks he went to his GP. The GP thought it might be an ulcer but a test showed that this was not the case. 

Richard then had a blood test and an ultrasound. These showed that there was something wrong with his liver function and that his pancreas looked abnormal. Richard then saw a gastroenterologist ( a doctor of the digestive system) who ruled out hepatitis.

 

In June 2009 Richard had a CT scan, which suggested that he had pancreatic cancer. A surgeon delivered the bad news, and told Richard that surgery wouldn't be possible unless chemotherapy or radiotherapy could shrink the tumour first. This was because the tumour was very close to the artery going to the liver. 

 

Richard had two failed endoscopies. Then he became jaundiced. He had a third endoscopy and didn't eat for 24 hours before. The surgeon wanted to put a stent into his bile duct to relieve the jaundice, but was unable to.

 

The next day the surgeon had to do the stent with surgery. A biopsy was also taken, guided by ultrasound. All these procedures were done with sedation so were not painful. The biopsy showed that it was pancreatic cancer. Richard was told that he had cancer of the head of his pancreas, which was ‘locally advanced’.

 

Towards the end of September 2009 Richard started chemotherapy (infusions of gemcitabine and tablets of capecitabine). He was taking part in a clinical trial but he developed an itchy rash from the chemotherapy and had a problem with the skin on his feet. He also felt sick at times.

 

He also developed a very rare side effect of capecitabine. The skin covering his scrotum peeled away, which was very painful. This cleared up after about a week. The dose of the capecitabine was reduced and he did not get this side effect again. During this time Richard found his specialist cancer nurse very helpful. She could reassure him when he was worried about side effects of treatment and she could make appointments quickly.

 

In December 2009 Richard felt very thirsty and had to pee a lot. His GP sent him to A & E, where a doctor said that he had Type 2 diabetes due to his tumour. After that, Richard had to be careful about what he ate, and he now takes tablets for his diabetes. He also started taking the drug Creon, to help his body absorb fat. 

 

After the first two cycles of chemotherapy Richard had a CT scan which showed that the tumour had not grown or spread. Having seen the CT scan, Richard’s oncologist (cancer doctor) suggested chemoradiotherapy, so Richard withdrew from the trial. He had one more cycle of chemotherapy and then in January 2010 started combined chemotherapy with radiotherapy. 

 

After the first two weeks of radiotherapy Richard felt very tired, nauseated and sometimes had tummy pain. After the last session of radiotherapy Richard had another CT scan. It showed that the tumour had not grown but hadn't got any smaller, so surgery was not an option. The scan also revealed some marks on his liver, Richard had an MRI scan and is waiting for the results. 

 

Richard thinks that the best way to treat his disease is by normal medical treatment. He also believes that people should have an open mind about alternative treatments and he has used hypnotherapy to help him give up smoking. He thinks that hypnotherapy can also help him to 'cleanse' his body and that it is a means of healing. He is convinced that his mental attitude towards his disease is very important. He is also sure that his diet is central to his treatment and his well being. Richard also believes that a ‘being’ greater than himself protects him. 

 

Radiotherapy finished at the end of February, and now, eight weeks later he still has pains in his stomach area from time to time. He also feels very tired, and sometimes needs a short sleep after lunch. However, Richard feels very positive about his treatment and his chances of beating the disease. 

 

We met Richard in 2010

 

Richard's surgeon failed to insert a stent using ERCP. The surgeon used ultrasound to help him insert a stent through Richard's abdominal wall.

Can you say a little bit more about the procedure they had to do to put the stent in, in the end through your stomach?

 

Yes.

 

Was that under anaesthetic for example?

 

That was again under local anaesthetic. It was, what happened was I was kept in over night, in the hospital after my failed endoscopy. And they said, “We, we are going to try and get someone to do it tomorrow morning.” And sure enough I went down and I was given a similar form of sedation, where I, it wasn’t a general anaesthetic, but it was somehow a little bit more powerful than a local anaesthetic. I lay on my side, there was an insertion made in my side, guided in by an ultrasound camera, and the whole process took about ten minutes.

 

And again was painless. And I was then taken back to the ward. I slept for an hour or so, and two hours later I was right as rain, and very, very hungry.

 

So that’s good to know. So not a painful procedure?

 

No. And then a couple of weeks later I had a similar procedure done to take a biopsy which was again an insertion in my side, guided by ultrasound, and a sample was taken which enabled them to finally confirm the diagnosis that it was cancer.

 

Richard had a skin rash due to gemcitabine and a bad reaction to capecitabine. The skin on his scrotum peeled off.

And my initial reaction to the chemotherapy was fine. I didn’t have any problems for a couple of weeks. And then I got something which is very, very common, which is a skin rash, coming from the gemcitabine. And its, and it appears on various parts of your, your body, sometimes on your chest, on your arms, also on your legs, so that my, appeared around the groin as well. And sometimes it’s bearable, but it is very, very itchy. And the standard treatment for it is a course of steroids. But of course the doctor’s not necessarily very keen to prescribe steroids, and so it’s a question of how unbearable the itchiness is, versus their unwillingness to prescribe the steroids. And in the end the…

 

Was that because of the trial? Or because they didn’t want you to have steroids?

 

Didn’t want, want you to have steroids. And I think particularly because it’s; steroids are associated with depression and so on. But in practice of course I had this, I had the steroids, and the itchiness went away, and it was absolutely wonderful.

 

I also got some problems with my feet. Again it’s very common for, side effect, where the skin on the soles of my feel peeled away, and it was a little bit uncomfortable, but it actually never really disturbed me. And it was one of those things which I had to put up with, and endure.

 

I got occasional bouts of nausea, and a little, and sometimes a little bit of feeling of being off my food, but nothing, nothing too serious. 

 

Then just towards the end of my first cycle of treatment, I began to develop a very uncomfortable different skin rash, in my groin, and it was very, very painful. And we, and it was sufficiently uncomfortable that I presented myself in A&E on a Sunday morning. And anyway it was, it took a while for everyone to work out what it was, but it turns out that it is a very, very rare side effect of my other chemotherapy drug, capecitabine, and of course when you’re taking something in pill form, it just looks like a, a pill. It, you don’t think of it as being in fact a very serious heavy drug. It turns out in the literature that in a few men, this particular side effect presents itself. And of course in the course of that, I discovered that the whole process of deciding the dosage for this drug is everyone’s best estimate. It’s, there’s not a huge amount of science behind it, so we stopped me taking that drug then, and then when I restarted, in the next cycle we restarted it at a lower dose and the side effect never reappeared.

 

So there was nothing to alleviate that side effect?

 

No.

 

Apart from changing the dose?

 

Yes. Ah and it was very, very uncomfortable. It was probably the worst thing that I have had in my, in the whole period. 

 

Did it just look angry and red?

 

Well, effectively the skin on my scrotum peeled off.

 

Richard had inoperable cancer. He had chemoradiotherapy. He described what it was like to have radiotherapy.

And so with radiotherapy, the way in which that worked was again every Monday morning I would go in and receive a small dose of gemcitabine, in the hospital intravenously. 

 

Then each day I had, from Monday to Friday, I had to attend the hospital for my radiotherapy. In preparation I had a special scan done which located the tumour precisely, and worked out the as it were the various angles in which it was going to be attacked by the x-rays. And my body was marked in various critical positions which became like the daily target so that when I lay on the x-ray machine I was able to be lined up precisely to the millimetre, exactly to, to receive my radiotherapy.

 

And I had five weeks and three days, so I had 28 individual treatments. And each treatment only lasts about five minutes, but you in, in order to get the treatment you had to get undressed, and then get dressed. And I have to say it was very well organised. I was rarely kept waiting for more than ten/fifteen minutes, and sometimes I would sort of arrive on time for my appointment and almost go straight in. So I certainly couldn’t complain about my, my treatment at all there.

 

Richard had radiotherapy for nearly six weeks. He had various side effects, particularly nausea and exhaustion.

So, the radiotherapy went on for nearly six weeks, and certainly in, during the initial phases I was sort of, “Oh this is, this is nothing.” People warning me about how tough it was, and oh it didn’t seem to be affecting me at all, and, “Aren’t I, aren’t I clever and aren’t I good”. And low and behold of course after a few weeks it began to get quite tough.

 

I was getting nausea, I was getting very tired. And I ended up, by the time it was finished I was really very, very exhausted. I was, and it took a couple of weeks for me to recover my energy. And probably a bit longer than that for me to get my appetite back. And indeed, I’ve now, it’s now about eight weeks since the treatment finished and I’ve still got a few side effects in terms of pains in my tummy, particularly at night, and so radiotherapy is quite a tough option.

 

Richard developed diabetes while he was having chemotherapy. He changed his diet and took a tablet morning and evening to control his diabetes.

Two things which I probably had better mention had happened to me on the way. In early December I discovered that I was diabetic. And the way I discovered that was that I developed terrific thirsts, really powerful thirst. And I began passing urine very frequently, particularly at night. And in the way that one does I looked it up on the web, and of course it, I was absolutely, it was absolutely clear that I was, I was diabetic. 

 

So I went and presented myself, it had happened over a weekend. I went and presented myself to the GP, my GP on Monday morning, who immediately took my blood sugar level, which was dangerously high, and referred me to the hospital straightaway. Again, one of those things that I learnt was that before I went to the hospital I rang my specialist nurse, and said, “I have been diagnosed as diabetic. I’m coming into A&E and would you alert the registrar and so on.” 

 

So another trip to A&E?

 

Another trip to A&E. And it was very fortunate that I’d done that because in fact somehow the e-mail from my GP to the Diabetic team had gone astray and they were sort of denying all knowledge of me. But fortunately the oncology registrar came…

 

down to A&E?

 

…came down to A&E, saw me, arranged for various blood tests to be done, confirmed the diagnosis, and gave me some, prescribed me some drugs. It was then arranged that I would go into the oncology clinic and have a discussion with the dietician about how I balanced off my diet, because at the time I was still, I was on chemotherapy which would mean that you would want a relatively high fat diet, whereas classically on diabetes you would be looking at low fat. And it in effect, the chemo won. So I was on a, on a sort of high fat diet, but low, low sugar.

 

And again that that worked very well because the dietician I’d already talked to about managing my diet as part of managing my chemotherapy, I already knew her; we were able to go through my diet step by step, meal by meal, about the changes that I needed to make. And the original idea was, from the oncology team, was that my diabetes would be managed by my GP, and that I didn’t need hospital treatment for that.

 

Do you also have to take any medicines for the diabetes? Or is it just diet?

 

Yes, I take a tablet morning and evening, which is not insulin, it’s a tablet, and obviously if it got worse, then there, it may be necessary for me to move onto insulin, but at the moment I’m managing fine and it’s quite interesting because I think that most people with type II diabetes, who are, have got it because of their lifestyle, they tend to be overweight, don’t take any exercise, and are notoriously non-compliant. Whereas I, you know I’m fighting for my life here, so I am doing everything that I should do, and I took in my diary for my first meeting with the diabetes consultant, and I’ve been taking my blood sugar and filling it in, and it was sort of nearly perfect. I mean it had the odd blip ah, but it was nearly perfect. And he looked at it, and he was just sort of almost astounded. And I, he said, “That,” well he said, “That’s just fantastic,” he said, “that’s absolutely great. You’re obviously managing your diabetes perfectly. There’s nothing to worry about.”

 

After hypnotherapy Richard often went to sleep and woke up as though he had had a sauna. He 'felt as if he had sweated out all the toxins'.

So I went to see a hypnotherapist, and explained what the problem was, and he said, that I have some, well it seemed quite logical which was that my rational mind had said, “You must give up smoking.” But my sub-conscious mind was saying, “Go on, it’s all right. You’ve always enjoyed it.” And that had been the one that had always won because actually one’s rational mind would have stopped me smoking years ago. 

 

And so he said, you know, “If I can work on your unconscious mind, I think we can then get you into equilibrium and you can relax.” So, we did that. And it turned out that I’m very susceptible and I can go into a trance just like that. And I was very happy doing that. And when we’d finished that session he said to me, “Have you considered using hypnotherapy as a means of cleansing your body, and of healing yourself?”

 

So I said, “No, I’ve never considered that.” So he said, “Well would you like to?” So I said, “Well, why not?” And he said, “Well I’ll tell you what, I’ll, I’ll do you a session half price.”

 

And so I went back about a week later. And he put me in a trance and I don’t know whether you’ve ever had any hypnotherapy, but one thing now that you do is that they record the, the process as it happens, and then burn it onto a CD so that you can go into the trance again whenever you want to reinforce your feelings. And so this particular trance which is all about healing, I have used on a number of occasions. And it’s very interesting, when I’ve, when I’ve done it I nearly always fall asleep and then I wake up and it’s as though I have been in a sauna. I’ve sweated out all the toxins in my body.

 

Which is, is fascinating. And he’s also taught me how to self hypnotise myself, so I can actually self hypnotise myself. Put myself in a trance, and in particular talk to my tumour about how unwelcome he is, and how strong I feel and how my body is capable of withstanding this. So that’s my one bit of alternative therapy…

 

And so it, I mean my attitude to the alternative therapies is very much to sort of have an open mind.

 

My, you know, my core thing is I do believe that you know the best way of treating my disease is via conventional medical therapy. On the other hand I’ve read a, I’ve had a very powerful belief that my mental attitude towards it is also critical. That my belief that I am capable of beating it is pretty important, because if I don’t believe that I’m capable of beating it who else can believe it? So that bit of sort of mental attitude has been very important to me. 

 

Richard's specialist nurse was most important. She answered questions, reassured him, and helped him make appointments.

And I have to say that the, the team I dealt with in oncology have been absolutely superb in terms of the information that I’ve had. Their ability to answer questions. And one of the most important people in my treatment has been my specialist nurse, because obviously one of the things that happens when you’re undergoing treatment is that you sometimes feel less well than you want to. And you don’t quite know whether that’s serious or not. And the great advantage of the specialist nurse is they’re used to dealing with people who are having your treatment. And, certainly I found that they’re absolutely invaluable to me, and I think to the doctors too, in terms of being able to reassure you when there isn’t anything very serious, but also expediting things quickly if you’re not feeling well, and saying, “Oh come on in, I’ll arrange for you to see someone today.” Or, “Why don’t you come into clinic in a couple of day’s time?”

 

So you can just ring them direct?

 

Absolutely. And so I have a specialist nurse who I use, who I ring on the telephone. And the other thing I do is use e-mail. Because sometimes when they’re busy during the day, I can just fire off an e-mail first thing in the morning, saying, “I’ve been feeling a bit nauseous,” or whatever it is, “should I worry about it?” And they can come back to me when it’s an appropriate moment in their day. So that’s worked very well indeed.

 

And I think that more and more hospitals are having specialist nurses as part of the team, and certainly it’s worked brilliantly for me, in terms of just, just reassuring me that what I’m going through is normal. And as I’ll come on and talk about in a moment, when things haven’t been going quite so well, making sure that I got very speedy treatment.

 

Richard found the MRI scan 'slightly alarming' because it was noisy but it wasn't painful. He had a 'dye' injected into his arm.

Yes, an MRI scan is slightly more dramatic than a CT scan in the sense that it’s using magnetic resonance, and you effectively you lie on a table, and the table moves into a tunnel. And then the magnetic resonance goes around you. It’s quite noisy so you have headphones on to protect your ears. In my particular case I was also having this contrast which I’d had on the CT scans, so that again I had to have a cannula and half way through the scan a dye was injected into my arm which then enabled them to see something different in my scan.

 

The process took about fifteen, twenty minutes. It was pain free. It was slightly, it was slightly alarming in as far as you’ve got all this noise going on, but it was pain free. Nothing, I didn’t worry about it.