Adrian - Interview 24

Age at interview: 48

Age at diagnosis: 47

Brief Outline:

Adrian was diagnosed a year ago after having pain and sickness mistaken for Irritable Bowel Syndrome (IBS) by the GP. Chemotherapy and a vaccine treatment didn't stop the cancer growing, so all further care has been palliative.

Background:

Adrian is a boat builder. He is separated from his wife. Ethnic background: White British.

More about me...

The first symptom of Adrian’s cancer was that he went off eating yoghurt and it made him sick. He had a pain in his shoulder and felt bloated after meals. The GP thought he had Irritable Bowel Syndrome (IBS), arranged for a blood test and referred him to a gastroenterologist (a doctor of the digestive system). The consultant confirmed IBS and recommended following a low fibre diet without explaining what that meant.

 

During this time Adrian got pain in his lower back but this didn’t worry him unduly as he already had pain there from a slipped disc. The blood test showed mild anaemia so he was sent for a colonoscopy and gastroscopy. Biopsies were taken. He was told he had pancreatic cancer. Adrian was angry that he had learned the diagnosis from a gastroenterologist, not a cancer specialist. He didn’t get to speak to a specialist cancer nurse until 3 weeks later.

 

Adrian joined a trial and got a new vaccine treatment as well as the standard chemotherapy of capecitabine and gemcitabine . On the day his second cycle of treatment was due to start Adrian was not feeling well. He put off the chemotherapy while he had treatment for his pain. He then had a scan which showed that one of his tumours had grown despite the chemotherapy. The doctors stopped the treatment.

 

He had a one-off radiotherapy session to treat a tumour in his hip. He takes enzyme replacement pills to make up for for his pancreas. He has had blood transfusions to treat anaemia.

 

Adrian had bad pain and sickness that put him in hospital a few times. He used a variety of pain control drugs and was then offered a coeliac nerve block procedure to dull the nerves, which helped straight away.

 

Since then he has been feeling more and more weak and tired. His tummy is bloated and stops him from eating well. He spends a lot of time in bed and has regular visits from a palliative care nurse. It has been more than a year since Adrian was told he had pancreatic cancer. He had been told he might not live beyond 9 months. He expects to die in the next few months and finds it difficult to know how to make the best use of his remaining time.

 

We spoke to Adrian in 2010

 

Adrian had excruciating pain in his left shoulder. At times he felt sick and bloated. Doctors diagnosed IBS. Then he developed lower back pains.

Ok, really just before last Christmas that I was feeling sort of generally unwell and nothing really specific, very peculiar little symptoms such as I’d gone off my yoghurt. I had yoghurt every day for years but just didn’t fancy eating it any more. If I did eat it, it made me feel sick. And then one day I had a really excruciating pain in my left shoulder, which I couldn’t think of anything that … well obviously it wasn’t in the shoulder. You could, I could move the shoulder. I could prod the shoulder about. It didn’t make the pain any worse but it was …it was really really bad pain. 

 

So after a little while, about only a few days, I went to the GP. She said that’s very probably referred pain from the diaphragm. And she gave me some antacid type tablets, which did do the job, made the pain go away. But I also reported this really extraordinary bloated feeling after, especially after eating a meal. And she couldn’t tie that in with any other symptom that might be or problem that might be to do with the referred pain. So she tentatively suggested IBS, irritable bowel syndrome, which was a fair enough diagnosis but not one I was particularly happy with. 

 

So she offered me a referral to my local hospital. And I always take referrals if I’m offered them, so I duly went for that appointment and had a blood test, which, obviously it was testing for a lot of different things, coeliac disease among them, a very comprehensive blood test. And also 20 minutes of being poked and prodded around at the end of which the consultant said, “Well you have IBS”. And I still wasn’t happy with that diagnosis, but it seemed to be definitive. So I went away, still had these … I went away with a recommendation to follow a low fibre diet, which I tried to do, which was pretty difficult because they hadn’t given me any … hadn’t given me a definition of what a low fibre diet was. So it was rather difficult to follow a low fibre diet if you’re not told what one is, but I did try. 

 

In the meantime I was not feeling any better and was getting really bad lower back pains. But that’s not massively unusual, I have a prolapsed disc, so lower back pain is something I’m quite used to. This was different to the disc pain but I wasn’t overly concerned. It was quite, quite a bad pain. 

 

Adrian had a biopsy of his pancreas. Doctors put a needle through his abdomen, guided by ultrasound. He had to stay in bed for four hours afterwards.

How did they do that biopsy?

 

The biopsy is done guided by ultrasound, just a needle in, straight in through the stomach. I was just under very mild sedation. And then had to go and have four hours not moving in the hospital bed afterwards, [laughs] which is the most uncomfortable part of the whole lot really.

 

Why do you have to not move?

 

Just in case they’ve hit something they shouldn’t, you have to stay still in your hospital bed in case, just, it’s a tiny, tiny chance that they’ve hit something or disturbed something that shouldn’t be, and you begin to bleed or something like that. So, it’s an uncomfortable four hours. 

 

Adrian felt that he should have had more information. After the diagnosis he had to wait three weeks before the nurse gave him written literature.

Did they give you any kind of written information about it to take home or not?

 

…I didn’t get any information at all, and at the first consultation I should’ve had, from a specialist cancer nurse. So it was only upon meeting that nurse three weeks after my first consultation that I was given any, any kind of literature at all. As it happens we have a, a charity that’s sort of an adjunct to the hospital, and they’re very helpful with, with information. And so all kinds of booklets and so on, yes especially the Macmillan booklets about pancreatic cancer. So yes, after a, once you’re, you’re properly in the system then that kind of information comes quite easily. 

 

So did you already know about that cancer information centre or did the specialist nurse point you at it? 

 

I didn’t know about the charitable cancer centre. It was my specialist nurse. So again I’d had three weeks between the, the initial consult, consultation where I was diagnosed and, and actually accessing this really valuable resource. That’s three wasted, unnecessary weeks where I could’ve been doing a lot more, learning about what was happening to me. 

 

And how did you feel during that three weeks, I mean emotionally it must’ve been quite traumatic I imagine?

 

…I’m not sure really that you ever get over the, the, the diagnosis. It’s, every day it’s a shock. Every day you’re still feeling well, well not well, but not absolutely foul. And you, you’re reminded every day therefore why you’re feeling like that……… 

 

So were you satisfied with the information that you got, those Macmillan booklets, or did you seek out more information for yourself?

 

The Macmillan booklets are really excellent. They give you all the, every, really everything you need to know. But inevitably it’s … one has a search around the internet and so on to see what else there is. So I had a quick look around various internet sites and can’t, wouldn’t like to say I can remember any in particular. Came across the inevitable cranks, crank doctors in America who, for all of your money, guarantee a cure. Fortunately, I’ve the sort of personality that discounts that kind of thing fairly quickly. 

 

Adrian was on the TeloVac trial. He had gemcitabine, capecitabine and the vaccine. He felt that by taking part he was getting the best possible treatment.

I started the, the chemo and along with that there was a drugs trial that was available which is called TELOVAC. It’s effectively, it’s an immune system booster and it’s just a couple of very easy injections, much, much easier to take than the chemotherapy. And it went fine. There’s, there’s three branches to the to the TELOVAC trial. I was on, on one that gave me the, the drug and the chemotherapy. 

 

And as I say it went fine. The chemotherapy was ok. I found, I personally found it very anxiety inducing because it was a weekly intravenous session which took, it basically took half a day at, at the hospital. But actually getting the, the drugs in was probably not much more than an hour but I’d been there parked, waited, got hooked up and so on … more or less half of the day. And there’s also an oral component which you just took at home twice a day as far as I recall, or maybe once a day. The entire treatment is called, combined is called GEMCAP, and again that’s not necessarily available except in this case because of the TELOVAC. The, the TELOVAC trial had to be an adjunct to, to the best possible practice. And the GEMCAP combined therapy was considered to be the best possible practice. If it had not been for the trial in my primary health trust, I would only have got the IV component of the chemotherapy not the oral tablet part of it. One of them’s called gemcitabine. One’s called capecitabine.

 

Talking of side effects, going back to your TELOVAC trial, you had the vaccine, did that give you any particular side effects? 

 

The TELOVAC vaccine gave no side effects at all. And the GEMCAP hardly any. So I was lucky, I guess I was just lucky. 

 

When you say hardly any, what were they?

 

Negligible, I can’t even really remember any. 

 

So did you get the vaccine at the same time as the chemo or afterwards?

 

The vaccine was done just immediately before the chemo. Very straight forward couple of little injections.

 

When you agreed you take part in that trial, as I understand it, which group, which arm of the trial you’re in is determined by computer randomisation. You can’t choose.

 

Yes.

 

So how did you feel about the computer choosing what treatment you were going to have?

 

Well the fact that you, the fact that you’ve been accepted for the trial at all is, is already a bonus because especially this health trust it means you’re getting a better, better basic chemotherapy. The computer randomisation, it didn’t bother me. I mean, I can imagine that some people might end up on an arm that they weren’t happy with and, and feel let down or cheated or that it’s the sort of thing that typically happens to them, but that’s their personality, it’s just, it has to be like that for it to be a scientific trial. If it, if it, you know, if they didn’t have those protocols it wouldn’t be a scientific trial, it would just be a free handout of TELOVAC drug and no research would be forthcoming from it. So it’s the nature of the thing. If you don’t, if you don’t like the idea of a drugs trial which is going to come with those protocols then don’t do it. 

 

Adrian has metastases in many places. He had radiotherapy to treat a secondary in his hip bone. The radiotherapy made him very tired.

I have various secondaries. I have, I have one in the bone at the top of my leg, which is a bone reducing tumour. I have, I think, five in the lymph nodes around, round my back, on the inside of my rib cage. And I have one in my liver. That’s about it as far I know. Without having another scan, I don’t know.

 

When you say, the one in your leg is bone reducing, does that mean it’s kind of eating away at the bone?

 

Yes, there are two kinds of, of bone tumour you can have. One causes the bone to grow but in a very weak mushy kind of state. The other one reduces the amount of bone that’s present. So bone-eating would be a bit of sensational way to describe it, but yes, that’s essentially it. I had radiotherapy for that, which worked well but I think I’m feeling the pain’s getting worse so it’s possible that it’s time for another look at that. Maybe it’s come back a little bit.

 

Tell me a bit about that radiotherapy.

 

I had radiotherapy for the secondary that’s in my hip. And it was very straight forward; I just had one, one session. It’s, because of that they fitted it all into one day for me, which was appreciated. It started with a, they already had an x-ray so they knew where they were looking for the secondary tumour. So they did a dry run, in order to get the grid that they mark on you in the right place. And worked out that they were happy with where it was, the dose they were going to use, the focusing and so on. And then after lunch effectively they did exactly the same thing, except this time it was for real, they actually used the radiotherapy. And it was two short doses, one from above and one from below. No, no appreciable side effects at all, except fatigue. Even the tiny little, I didn’t, I hadn’t, I was very fatigued afterwards, for two weeks afterwards. And you read it in the list of side effects but you think, “I’m having such a tiny amount”, that you sort of let it go over the top of your head. But the fatigue from that was extraordinary. So people who are on a long course of it must, must really suffer. Yes, because one, one little dose lasting less than five minutes knocked me out for two weeks. 

 

A specialist cancer nurse helped Adrian to claim for a Macmillan grant and for a range of other financial benefits.

When, when I first became ill my GP wouldn’t sign me off for IBS. She said nobody gets, goes on the sick for IBS. Of course the, the pain that I was in was actually much more than an IBS patient would have, but she didn’t understand that. The pain that I was in was from my secondaries around my back area. But after the, I had a bleed in my stomach because of the biopsy to check for coeliac disease, they were a bit vigorous in taking a sample, and that made me really very anaemic. And, to the extent that I had to have supplement, iron supplements. And then my GP signed me off no problem, she said, “You, you can’t be expected to work with haemoglobin that low”. So, I was on sick pay, which has a strange name now, employment and support allowance... or some such thing 

 

I think that’s absolutely right.

 

So I was already on that benefit and, when I was diagnosed obviously the, there’s no question then of me coming off of it. I got a certificate from the doctor, no problem. When I eventually met up with the specialist cancer nurse she went through the entire range of benefits that I may be eligible for, as well as applying for a Macmillan loan, Macmillan grant for me. And so I’m now on the higher rate, I’m on long term rate I think it’s called, of employment and support allowance. I’m also on Disability Living Allowance, both components, mobility component and the other one, which I can’t remember what it’s called. And I also have, because I live alone, another benefit which, the name of which I can’t remember but it’s something a bit obscure like enhanced disability allowance or severe disability allowance or some such thing. So, I’m on higher rate of the, both the Disability Living Allowance. So my benefit, I’m, I’m, my benefits are enough to live on, which if it was, if I didn’t have the disability living components there really wouldn’t be enough. 

 

So that’s the story as far as benefits go. If, if you don’t have a nurse who specialises in it for you then the Macmillan, Macmillan have advisers who work through CAB or a local, your local charity drop-in perhaps. So there’s help available to get your benefits sorted out. Macmillan’s the first stop. Macmillan’s the first stop for an awful lot of things really. 

 

Adrian had a coeliac nerve block to reduce the pain. It succeeded so that he needed less fentanyl and oxycodone.

But the pain was, it was not good. I was using more and more oxycodone and that brings the same side effects especially to due to constipation, which makes life quite difficult. And my doctor had already explained to me a procedure called a coeliac nerve block whereby alcohol is injected into the nerves that are around the inside, inside of the stomach cavity…. obviously a difficult place to get to. So it’s not a straight … it’s a straight forward idea, you just inject alcohol into the nerves that are being used to transmit the pain from the secondaries, when, where this pain‘s coming from. And with a bit of luck they, the nerve is sufficiently damaged that it can’t any longer transmit that pain. Again with a bit of luck your body doesn’t bypass it in someway, which it will try to do. And you therefore experience reduced pain... 

 

There’re various ways of getting the needle into the nerve, but it’s not easy because of, because the nerves are inside the ribcage nestling down against the spine. And the way that my doctor prefers to go is through the back with a needle which is guided by x-ray and wiggles its way around and finds the nerve, and then the injection is made. That’s done twice, one for each side of the spine. That’s not without its hazards because the obstructions along the way including the aorta, which is not something you want to burst, and it’s also not something that you want to inject alcohol into. So the risks of this procedure, whether it’s done by this x-ray guided method or, or any other method, is to actually rupture the aorta … whether that’s ever happened I don’t know … it certainly never happened in my doctor’s experience. But there’s also a possibility that in going into the nerves to inject the alcohol, accidentally included or completely mistaken for the nerve that you’re looking for, they’ll hit another nerve or other groups of nerves, and the side effects of that is permanent paralysis of the legs. And that apparently can be up to a one in five hundred chance, which is not … it’s a figure that you need to think about. You, you just, you don’t sign consent to that lightly. One in five thousand maybe you would, you would not think so much about, but one in five hundred that’s quite a lot of people. It’s actually what … I was having to decide whether to, to go with this treatment or not and, and that statistic was something that’s keeping me from not really wanting to. 

 

But the pain was getting worse. My constipation was getting worse. I couldn’t really see life getting any better if I stayed on purely med, medication for pain relief. And that’s when I made a decision to take this ground floor flat. I thought it, ok I get a ground floor flat and then if I am confined to a wheelchair a least I’ll have some, some things will, will not be so difficult as living upstairs in a wheelchair. So I agreed to, to the procedure. A short stay in hospital, I think it was the day before the procedure or maybe two days, just to settle down. 

 

The procedure was under what’s called sedation but it’s a very heavy sedation. It’s the, the anaesthetist is aiming to keep you on the cusp of consciousness. So rather than, than what you’d think of as normal sedation, just a bit dopey, in fact it was very, very close to a general anaesthetic and I don’t recall anything of the entire procedure. I recall the anaesthetist putting the cannula in. Had to have a couple of attempts at that…. And the next thing I remember is waking up in the recovery room not feeling too bad at all. And in my case the, the operation was an almost immediate success, I could reduce my fentanyl by half. My oxycodone use went down considerably. And I can still walk around. So it’s altogether really, really good, one of the few positive things to have happened recently.