David - Interview 78

Age at interview: 45

Age at diagnosis: 38

Brief Outline: David first had symptoms in December 2003. He was diagnosed with pancreatic cancer in 2004. He had a Whipple's operation, followed by chemotherapy and radiotherapy. In 2010 his cancer recurred. Doctors have told him that he has 'weeks or months' to live.

Background: David is a Detective Sergeant in the Metropolitan Police. He is married and has three children. Nationality/ethnic Background: White European.

More about me...

David developed symptoms just before Christmas 2003. He felt tired, his urine looked like the colour of tea, his eyes looked yellow, and he felt sick. His stools had changed colour and were greasy. He went to his GP, who sent him to the local hospital. Gradually he felt worse, and started to itch all over. He felt sick and was very worried. David had an ultrasound scan and on January 9th 2004 a doctor inserted a stent into David’s bile duct so that the bile could flow down the bile duct more easily. This was done through an endoscope. David had a sedative for this procedure.

 

David was told that he should go to a specialist hospital for more treatment, but he did not know the exact reason. A doctor had told him that he might have pancreatitis or possibly cancer. When he arrived at the specialist hospital he realised that he was in a hospital for cancer patients, which was rather a shock. He had a CT scan and was then told that he should have a Whipple’s operation. David felt extremely anxious. 

 

The surgery took place on 24th January 2004. The surgery went well even though the surgeon had nicked the aorta and David had needed a lot of blood. David found that the intensive care ward was very noisy, and he had nightmares at times. He had drips, drains and a catheter. David was in the intensive care unit for a few days and then moved back to the ward. His pain was well controlled with an epidural. Later, when that was removed, he had a morphine pump. He developed an infection so had to have intravenous antibiotics. David felt that he had been well looked after in hospital, but he felt that there was a lack of continuity of care. He saw too many different doctors, who said different things and sometimes contradicted what others had said. 

 

During the surgery the surgeon had taken a biopsy, and he was able to confirm that David did have pancreatic cancer. David stayed in hospital until the beginning of March. It was lovely to go home and get back to a normal life. The district nurse called frequently to dress his incision, which had been infected at one end.

 

In April 2004 he started adjuvant chemotherapy, just in case any cancer cells remained. He took part in a trial called the ESPAC-3 trial and he was given Adjuvant 5-FU as part of that trial. (ESPAC-3 is a multi-center, international, randomised, controlled phase III trial of adjuvant 5-fluorouracil/folinic acid (5-FU/FA) versus gemcitabine (GEM) in patients with resected pancreatic cancer). David had cycles of this chemotherapy for six months. At times he had nausea and did not feel well.

 

David was able to return to work in September 2004, soon after the last cycle of chemotherapy. His employer and work colleagues were all very supportive. For a couple of years he felt very well. He ate well and put on weight and enjoyed cycling and social life as well as his work. He saw the surgeon every three months for follow up.

 

In December 2006 David started to feel nauseous and unwell. He went back to the hospital for a check-up. However, the CT scan looked normal and the CA 19-9 tumour marker in his blood appeared to be normal too. David started to have diarrhoea and he lost a lot of weight. Eventually David had a private consultation with a gastro-enterologist at his local hospital. He had tests and was referred to the oncology department, where he was told that there had probably been a recurrence of his disease. The doctor assumed this after looking at a CT scan. David went back to the specialist hospital, where he had a PET scan. This confirmed that there had been a recurrence. David was relieved in some ways because at last there was a reason for his ill health.

 

In early 2008 David was offered the chance to go on a clinical trial which involved gemcitabine, capecitabine and erlotinib. David went on to this trial but suffered some side effects. He had some rectal bleeding and also vomited blood on one occasion. Now he has terrible memories of chemotherapy. It makes him feel sick just to think about it. 

 

In January 2009 David started radiotherapy. He had 28 cycles of radiotherapy, Monday to Friday with weekends off. He did not experience any serious side effects from that. He just felt a bit tired at times, but he thought that that may have been partly due to all the travelling he had to do to get to the radiotherapy. 

 

In September 2009 David started having some pain and discomfort. The CT scan did not show any real changes, but in February 2010 a blood test showed that the tumour markers had risen. Another CT scan showed that the cancer had spread to the pelvis.

 

David is now working with the Macmillan team. He controls the pain using hot water bottles, and morphine. He has also tried some breathing techniques, which help reduce the pain. 

 

David has been told that he only has weeks or months to live, which is shocking news. He has been to the local hospice to discuss palliative care and the future management of his condition. He likes the hospice and has confidence in the staff but feels sad and weepy and very emotional at times because of what is happening. He has been given some anti-depressant tablets, which he has decided to try. David would like to stay at home as long as possible and then move to the hospice.

 

David has had tremendous support from his family, friends and colleagues. His employer has also given him great help and support at all times. He has had tremendous support from the Macmillan team and he has also found help via complementary therapies such as reflexology. He takes Creon to help him digest his food.

 

Doctors have suggested that David should have more chemotherapy, but he does not think that that is a good idea. He would rather enjoy the life that he has left, rather than suffer chemotherapy again for perhaps an extra couple of months. 

 

David was interviewed in 2010. 

 

David's advanced pancreatic cancer is causing back pain, which he manages with drugs, hot water...

The pain is in the lower back. Lower back, in the lumbar, is it lumbar part? It’s sort of centred there. And I do, I get, again, working with the Macmillan team, and some drugs there we seem to have, and learning to live with that pain, there’s various techniques that I can do if I use water bottles that aren’t too hot, and literally physically massage my lower back and massage my stomach, using a water bottle, use the pain relief and use oral morph, I can manage that now and get the pain from being chronic down to being reasonable in a short period of time.

 

And you do the massage yourself or do you get someone else to do it?

 

I literally, if my wife’s around she’ll help me do it, or I can. It’s quite funny, I can literally do the two together, massaging my stomach and my back, which is quite funny to see really, but I can do that now.

 

Went back to the doctors last time, which is about two weeks ago, and basically described life expectancy from weeks to months, how long I’ll live.

 

And again at this point we’re going to go back to the local oncology team to, I think more, I think to hear it in both ears. I think we’ve heard it from one side, the long-term specialist hospital, and I’d like to get the same advice; the view now very much is to put me back on chemotherapy.

 

So you might start some more?

 

And that’s been discussed as that it’ll be beneficial to my symptoms. And I can’t see that. I can’t see how going back on chemotherapy at this stage will make my symptoms better. Because I’ll have all the aspects of chemotherapy that I don’t like.

 

Well we’re trying now to do a referral back to the local oncology team, to hopefully try and meet the same person again. For two reasons' 1, to get a second view of all the information, the blood tumours, the scans etc.; and 2, to see their view on whether chemotherapy at this point would be beneficial.

 

Again, I’ve spoken with the palliative doctor and there’s - I’ve got to be careful here - that there’s sometimes a view that oncology teams love to give patients chemotherapy because its giving them a treatment.

 

And giving them, I don’t know, giving them a life line. If I had to vote today, I’m probably going to keep away from chemotherapy. It was sold to me on very much, sold to me that it would help in treatment management. On the advice I’ve taken so far, that doesn’t seem to be fact worthy, or questionable. And I’d rather be happy. And if it meant living another two months on chemotherapy, then I’d rather live two months less but enjoy the benefit of life.

David is terminally ill with pancreatic cancer; he has recently decided to take anti-depressants...

You said that now you’ve reached this stage, of course you feel a bit low at times. How are you managing that with the nurses?

 

Well, again the sort of, the emotional side has so many, in the last, say, since Christmas, has become a lot more apparent. And I think my wife has sensed that, and it’s been emotional, or there’s been periods where it’s been apparent from the way I’ve spoken. 

 

And again that’s through my wife and through the Macmillan nurse there’s been discussion about how we can manage that. And again when I met the palliative doctor yesterday there was, it was quite a, I mean it was my birthday yesterday, which in potentially your final year is not a joyful occasion. And there was a discussion as to whether I should go on anti-depressant tablets, which for me is just like, seems to be a taboo. I said “Why would I need those?” 

 

But I’ve kind of reflected and it’s been discussed with Macmillan’s nurse prior to this, and it’s been discussed with the specialist hospital. Again I think there’s been a noticed that, I’m a lot, not as strong in character as I’ve been, and then I’ve decided that there does seem to be some more benefit in going on an anti-depressant. On a low level, just to, I think it was described, “Create an even keel”. So to try and manage the highs and the lows, and try and get a more steady path through, which I think makes sense. 

 

Why, why, well I’ll tell you in the future when I’ve taken the tablet, but if it does make a difference and carries me through this stage better then that’s probably an advantage really than just being up and down.

David’s symptoms had been dismissed by his doctors for a year before a recurrence of his...

December 2006, as I say, for the very first time I can remember driving the car back from the base training, and just felt nauseous, didn’t want my tea. I didn’t want to eat which, again, for a guy that loved food, was out of character.

 

Went through the trip, came back, I remember had the Christmas, I remember speaking to my wife, saying that things aren’t right here, and I got a little bit upset because, again, I think I felt possibly that there was a reoccurrence of the illness. Straight after Christmas got in contact with the specialist hospital and had an appointment.

 

They booked a CT scan; the scan didn’t show anything. The blood tumour marker, the 19-9, which is the cancer marker for pancreatic cancer, didn’t show anything. 

 

And then I spent well over a year going back to the hospital saying I don’t feel well. I started to get terrible diarrhoea, at that time it was diarrhoea where very little notice from the feeling of needing to go to the toilet to going to the toilet would be sometimes a minute, two minutes. I couldn’t get to work very well because sometimes I’d need the toilet on the way to work. And then literally I’d have to find different toilets on the way, so that if I did need to go I could divert.

 

And didn’t, well I wasn’t happy really. Losing weight, every time I went back to the hospital I was losing weight at quite a dramatic rate and saying to the hospital, “There will come a point where I can’t lose much more weight”.

 

 “It will become critical”. Luckily, because I was a big guy, there was quite a bit to go. I mean now I’m nine and a half stone. 

 

Eventually we decided to go private. So I went to the local hospital, back to the original physician that I saw who had given me an indicator of what he thought it was. Saw him. He ran a series of tests and did a CT scan. 

 

And then out of the blue a letter arrived from the oncology unit at the local hospital for an appointment. I went to that appointment, and again, you know when you’re sat in an oncology department waiting to see a doctor that there’s only one thing that they’re going to tell you.

 

I went to see the doctor, and he said there was a re-occurrence of the disease.

 

What was your reaction to getting that news?

 

Relief really, because for a year I’d been sort of saying, “Look, there’s something not right. I’m losing weight, I’ve got nausea, I’ve got diarrhoea”. And again, at one point I even went to my local GP because I didn’t know where to turn to. No-one was sort of, seemed to be listening to me. And my local doctor basically sort of more politely offered me psychiatric care. Is that the right word? Counselling? Holistic, an holistic approach, “Maybe it’s in your mind, and its mind over matter”. And that just, ah, I was, didn’t openly say it but I was absolutely fuming.

 

Because in my mind I knew it was there, and I think, oh well this is my seventh year, I’m a seven year survivor, and I think one of the reasons why I’ve been here so long as I seem to present symptoms very, very quickly. Like when the original tumour came, it was a very small tumour which blocked the bile duct, which caused the jaundice which then flagged up the tumour.