John - Interview 40

Age at interview: 57

Age at diagnosis: 52

Brief Outline:

In 2005 John was diagnosed with pancreatic cancer. He had a Whipple's operation, which was followed by chemotherapy. In 2009 John was told that he had cancer in both his lungs. He is not having much treatment at the moment and his pain is well controlled.

Background:

John was a shipwright before he retired in 2007 due to ill health. He is married and has two adult children. Ethnic background/Nationality: White Scottish.

More about me...

In March 2005 John felt very tired and his appetite wasn’t as good as usual. He thought he might have an ulcer, but tests done by his GP didn't show that there was an ulcer. 

In September 2005 John had pains in his tummy, and didn't feel much like eating. Medicine prescribed by his GP did not seem to help. The pain got worse and so John went back to his GP. John also noticed that his pee had become darker and his poo was paler. He looked a bit jaundiced and he felt very itchy.

 

John was referred to his local hospital, where he had several scans, including CT scans, MRI scans and ultrasound scans. The doctors said that they thought he might have gall stones. One doctor told John that he thought it might be something ‘nasty’.

 

John was then admitted to a specialist hospital for more tests. He had another CT scan and MRI scan. He also had an endoscopy and a biopsy. The next day he was told that he had cancer in the head of his pancreas. This was a great shock to John and to all the family. John stayed in hospital and had a Whipple’s operation a few days later. 

 

The operation went well. John was in the high dependency unit for about five days. He then went back to the ward. John had intravenous fluids, drains and a catheter. He made a very good recovery and was soon out of bed and walking. He went home and gradually recovered there. He slept downstairs for the first few weeks because he found it difficult to go upstairs. He took tramadol and paracetamol for pain, which was mainly along the incision line, and Creon to help with his digestion. 

 

John had chemotherapy from January until June 2006. He experienced very bad side effects, including hair loss, mouth ulcers, sickness, diarrhoea and pain. He said that it was a terrible time for him. He found it hard to eat and he lost a lot of weight. 

 

After all the treatment finished John went back to work in the ship building business. He worked part-time but he found working difficult, so in June 2007 he decided to retire and was on government disability benefits.

 

John developed mild type two diabetes. He controls the diabetes by eating a healthy diet. He doesn't need insulin. The doctor has prescribed simvastatin to prevent any cardiovascular problems that might arise as the result of the diabetes. 

 

When we spoke to John he was having a check-up every four months. In June 2009 he developed pain under his rib cage. He went back to the general hospital for more tests, including a PET scan, and the doctors found that he had cancer in both his lungs. The doctors weren't sure if this is a cancer that has spread from the original pancreatic cancer or if it is a new cancer. John has seen a lung cancer specialist, who suggested that John should wait to see if any new symptoms develop before starting any more treatment. The specialist doesn't think that chemotherapy or radiotherapy would be helpful at this point in time. 

 

John has been to see the palliative care team at the hospice. The pain management specialist gave him morphine and other medicines to control his pain. A psychologist from the hospice also visited him at home. John found this counselling very helpful.

 

John still feels very positive about his future, although he dislikes the uncertainty. His wife and family and friends have given him wonderful support. He has also had great support from the medical team and from people working at the local cancer support centre. There he has done Tai Chi and has attended relaxation classes, which he has found helpful. 

 

We spoke to John in 2010

 

John forgot the name of his chemotherapy but very bad side effects included nausea and vomiting, diarrhoea and pain.

Yes, I went through a course of six months of chemotherapy, starting from the January to the June.

 

January two thousand and six.

 

Yes.

 

To June. Can you tell me about that then? Do you know what chemotherapy it was?

 

It was an American type, an American college, I think it was, had been working on this chemotherapy and when I first started it they told me that it, you know, there would be no loss of hair, there would be very little side effects but, unfortunately, for me I lost most of my hair and took every side effect, ranging from ulcers inside my mouth to sickness, diarrhoea and pain. It was really a terrible time. It went on six months. It took them three months to get the balance of the chemotherapy right, just to work within, where it was controllable for me, pain-wise. It was going for three weeks, every morning and then taking a week off and then going back again. So, unfortunately, for me it was once the side effects were just beginning to go away then I was back for more chemotherapy and started that cycle again.

 

Do you remember what the drugs were called? Was it gemcitabine?

 

No.

 

Something else, no.

 

No, I can’t remember.

 

You don’t know. So that was a difficult time?

 

Yes

 

What was it like actually having the chemotherapy?

 

Again, the chemotherapy was not a problem whatsoever. It was very quick, and again, when we went to the hospital and told them I was there, it was there it was prepared ready for me. They didn’t take long but the side effects were the horrendous part of it.

 

Did they give you anything to help you with the side effects?

 

They gave me various creams and mouth washes etcetera to try and take away the ulcers, and where at one stage I was, my throat was practically closed up and it was very, very hard to eat. I was in a state of kind of force feeding myself because it was terrible, and I had no appetite at all. It took me a long time to eat anything.

 

Months after surgery, John did Tai Chi at a Maggie's Cancer Caring Centre. He found it relaxing.

Have you been in touch with any support groups?

 

Yes, initially, when I was diagnosed with pancreatic cancer I was told about Maggie’s Cancer Care Centre.

 

And although I was told I just didn’t bother but about six months after my operation my GP suggested that I visit them and I went there and that was really terrific for me, sitting talking with people with the same cancer, or similar cancers, and the experience they went through, and that really helped. And, unfortunately, a lot of people don’t know that places like Maggie’s Cancer Care Centre exists.

 

And they should be given more time and effort towards them to help people.

 

So how often do you go there, have you been there?

 

Well, I’ve not been for quite a while but I used to go every second day, every third day, when I was going for relaxation exercises.

 

Every Thursday.

 

No, no, every second day. It was just it was I think the Thursday, no, Tuesday and a Thursday I tell a lie, Tuesday and Thursday I went and they had relaxation courses, and they did some tai chi, which much to my surprise, was very, very helpful. It was very relaxing.

 

Tell me about tai chi?

 

Well, well, it’s a form of, well, combative dancing, as it were, and just it’s, it’s very relaxing. It’s just movements of the body and trying to relax at the same time but it was very worthwhile.

 

Do you do that with music?

 

Yes, we did it with music. They had music or they put a tape on, and they gave us a tape to take home with us if we wanted to try it at home.

 

But it was certainly, it was, it was very therapeutic when you were in the group.

 

After his treatment finished John felt well for four years but then developed pain under his rib cage. A PET scan showed that he had developed cancer in his lungs.

Did you have symptoms that sent you back to the doctor?

 

What I had was, initially, with, as I explained, was abdominal pains but this pain I was getting was under my rib cage.

 

And it was very, very sore. I went to my GP to enquire about that, whether it was related to the pancreatic cancer or whatever. They referred me to the general hospital again for different scans and then they discovered it was it was, the cancer had spread into both lungs.

 

So this is a secondary.

 

Yes.

 

From the pancreas.

 

Yes. But what they, there was a pancreatic team or the pancreatic surgeons are confident that it’s not back in the pancreatic area.

 

But they think it might have come, originally, the lung problem, from the pancreas.

 

Well, well, they’re undecided on that. They don’t know whether it is or not or possibly I’m just one of these unlucky people.

 

When did you start to think you had other pain under your rib cage? What year was that?

 

That that was just last year. It would be about.

 

Two thousand and nine.

 

Two thousand and nine. I would think, round about again, June July time.

 

And so you went back to your pancreatic team.

 

Yes.

 

To start with.

 

Ah ha. 

 

And did they take X-rays or?

 

No, no, what I did was go back to my GP.

 

Okay, and they referred you?

 

And they referred me for CT scans.

 

And they sent me to another specialist hospital for what they call a PET scan, which is a radioactive dye that’s inserted and that’s when they discovered that the cancer had had moved into my lungs.

 

Can you tell us what a PET scan is like please?

 

I can’t remember the what the abbreviation actually means.

 

But what it what is is a large cylinder that’s sent up from Sheffield, radioactive, and they put a dye like a sugar, a coated dye into to your system and that shows up all the bad bits, as it were, and your body comes out bright yellow so they can identify there are tumours or whatever and that’s why they’re confident that it hadn’t returned to the pancreatic area.

 

And what’s it like in the room when it’s being done?

 

It’s just the exact same as a CT scan and you’re going inside the polo mint, as it were. It’s just the exact same but the big difference is the PET scan takes the x-rays from above and below and sideways.

 

It’s more in depth than the CT scan.

 

And this radioactive substance, how does that get into you, did you say?

 

They put it in through a cannula.

 

Right.

 

And then you drink a lot of water for the next four hours to just flush it out of your system.

 

It’s not uncomfortable.

 

No, no. 

 

Okay. So from that they decided that there was some cancer in the lungs.
 
Yes.
 
But they don’t know whether it’s the secondary from the pancreas or whether it’s just an unfortunate.
 
Yes.

John was very impressed by the doctors and nurses. He observed that the junior doctors in particular were very committed to their work.

Can you say a little bit about the nursing care?

 

Second to none, absolutely second to none, and although I’ve had experience, experiences with different people in hospital and visiting them and things, but to be in that position myself, and just to acknowledge and realise the commitment and hours the doctors and nurses put through is unbelievable. There were some mornings I’d see a young doctor there and he’d be helping out every patient and at half past ten at night he’d still be doing the same thing only to return the same time in the morning and go through that procedure daily.

 

 

And to be fair, it shouldn’t be asked of them. They were always above and beyond the call of duty.

 

That’s good. How was communication between you and the doctors? Did you did, was there always good communication?

 

Yes, absolutely. They, I’ve always found that to communicate with your doctors or nurses or anybody in that position is to just speak to them as normal as anybody else and you get a better response but what I found was that on the daily rounds, for example, they never appeared to be annoyed or disappointed. They always had plenty of time for any questions that any of the patients asked, not just myself.

 

John found it very worthwhile to talk to a psychologist based at the local hospice. She visited John at home on four occasions.

Did you meet anybody else at the hospice? Was there anybody else in the team there that you could talk to?

 

There is a psychologist, who has been visiting me at home.

 

Yes.

 

On four occasions now. And I find that very helpful for somebody just to speak to as a release valve, where, where sometimes where you maybe build something up inside you and you don’t want it bothering your, your family but in that respect the psychologist then makes it easier just to discuss simple things I suppose.

 

Yes. Did you ask to see a psychologist or did somebody suggest it?

 

The consultant who, for the pain management suggested that. They work in the same, they work in the same team, and he suggested that I speak to, it wasn’t compulsory.

 

But if I wanted to, as he found it was helpful to speak to them, and he was absolutely right. It’s been worthwhile.

 

And you said the psychologist came here.

 

Yes, she comes here to visit me. I was willing to go to the hospice, but she prefers us to meet in just like a local or your own environment because it’s more relaxed and.

 

Yes. And what happens during one of those sessions?

 

Just a talking session really. Sometimes just about things in general or if I’ve got any questions that may, that may be appertaining to the pain management. Or the pain or whatever. It’s just a general chit chat, as it were.

 

John's local Maggie's centre was 'terrific'. It helped him to listen to other people's experiences of cancer.

Have you been in touch with any support groups?

 

Yes, initially, when I was diagnosed with pancreatic cancer I was told about Maggie’s Cancer Care Centre.

 

And although I was told I just didn’t bother, but about six months after my operation my GP suggested that I visit them, and I went there and that was really terrific for me, sitting talking with people with the same cancer, or similar cancers, and the experience they went through and that really helped. And, unfortunately, a lot of people don’t know that places like Maggie’s Cancer Care Centre exists.

 

And they should be given more time, and effort towards them to help people.

 

So how often do you go there, have you been there?

 

Well, I’ve not been for quite a while but I used to go every second day, every third day when I was going for relaxation exercises.

 

John was glad that his surgeon used layman's terms to explain what would happen during the Whipple's operation.

And did you always get the same message from different doctors or did you sometimes get different messages from different doctors?

 

I wouldn’t say they had different messages. They, maybe some terminologies were different but they all amounted to the same result or the same ending, as it were, because everybody has got their own styles.

 

So some were maybe a bit more streetwise in their explanations than others.

 

What do you mean by that?

 

Oh, when the surgeon who operated on me, and it had been explained prior and after the operation what the Whipple’s operation meant and he told me, “Well, in layman’s terms what I am doing is taking out all your plumbing and taking away the pancreas and putting all your plumbing back, not necessarily in the same place, and hope it works again.” And I appreciated that more because it was more down to earth and I could get a picture of that rather than have a word seventeen letters long and not understanding it so no, I appreciated that more but there was quite a, what can I say, there was, there was more of team play when they were round at the wards, sort of well connected.

 

There was team play?

 

Yes, yes, well, I felt that they went out of their way to explain things in normal terms as well as in maybe, mixed up. When doctors are talking to you