Bob - Interview 29

Age at interview: 65

Age at diagnosis: 62

Brief Outline:

Bob was diagnosed with pancreatic cancer in 2007. The surgeon had hoped to do a Whipple's procedure but this was impossible because of the position of the tumour. Bob has had chemotherapy and has taken part in clinical trials. He feels quite well but tired.

Background:

Bob was the managing director of his own company before he retired. He is married and has three children. Ethnic background/nationality: White British.

More about me...

In 2006 Bob had pain in his tummy. He thought it was an ulcer, because he had one before. The GP gave him some indigestion pills but the pain carried on for about nine months. Bob also lost more than two stone in weight. He went back to see another GP, who sent Bob for a scan.

 

The day after the scan, the doctor told Bob and his wife that he had pancreatic cancer. The doctor said it was advanced and he probably had about five months to a year to live. This was a terrible shock. Bob and his wife could hardly believe this news.

 

Bob had to wait three weeks for an endoscopy, because the specialist was on holiday. After he had it, the surgeon said it might be possible to remove the tumour. The tumour was in the tail of the pancreas. The surgeon wanted to do a Whipple’s procedure, but couldn't. The tumour was wrapped around major arteries and involved some of the lymph nodes too. This meant that the tumour couldn't be removed. The surgeon closed the incision without doing the Whipple’s procedure. 

 

Bob woke up after the operation and was told it had not been successful. It was devastating news. The surgeon who had done the operation did not speak to Bob at all, which was upsetting. Bob was glad to leave hospital after three days. He didn’t like the mixed ward and he thought that the hospital was dirty. Some of the nurses were good but Bob felt that others did poor work.

 

The District nurse took out the stitches from Bob's stomach. The incision did not heal very smoothly, and still causes pain. 

 

Bob went back to see the oncologist, who arranged for him to have three week cycles of chemotherapy for three months. He had gemcitabine, which caused quite bad side effects, and which was not effective.

 

In 2008 Bob agreed to go onto a clinical trial. He had a treatment called Reolysin, which is made using reovirus. Reovirus is a common virus that can kill cancer cells but doesn't usually harm normal cells. This trial went on for five months. Bob had the therapy every day for three weeks and then a week off.

 

This treatment had awful side effects. For example, Bob’s finger nails went black and were infected. A plastic surgeon had to remove them. Bob also felt very sick. At one point the veins in his stomach collapsed and started to bleed. He lost a lot of blood. This was a frightening experience. Bob felt so bad that he had to stop taking the new treatment after five months. Originally the doctors had planned for a six month trial.

 

At this stage Bob was told that he now had diabetes. He was also told that the cancer had spread to his liver, kidneys and lungs. Now Bob is waiting to see if there are any other trials he can join. His diabetes makes him feel awful at times. He has to inject himself with insulin for his diabetes. He also takes Creon to help with his digestion.

 

Bob is now having another treatment of chemotherapy drugs called mitomycin and 5-FU. He has a pump which gives him these drugs over a 24 hour period. The drugs go into his body via a PICC line (a peripherally inserted central catheter). Bob thinks that this treatment has been helpful, because his CA119 blood count has come down and now he needs less pain relief. However, he has started to get side effects, such as nose bleeds so thinks he will have to stop the treatment soon. 

 

Bob feels that he has been ‘robbed’ of his retirement. On the other hand he still feels good, though tired at times. He feels lucky that he has survived much longer than some other people who have pancreatic cancer. 

 

We spoke to Bob in 2010

 

Bob took part in a clinical trial. This included chemotherapy and Reolysin, which is made using reovirus. He suffered terrible side effects.

…so you were invited to take part in a clinical trial where you had a different drug?

 

Yes, Reolysin, okay, which was combined with a virus, which went on for five months of going in there every day for three, for three weeks, then having a week off, and then another three weeks and a week off, going in on a daily basis.

 

When you say it was combined with a virus, was that injected or was it a vaccine?

 

It was a virus that was injected, yes. The nurses that gave you the treatment were, they have to lock the doors of the place to stop people coming into the room, and they had to be suited and booted with a mask and everything else because of the virus, etcetera.

 

I was told that it would be arduous, and that was an understatement. Arduous was more, it was more than arduous. It was, my nails all come out, my finger nails, all went poison. My hair come out, I remember driving along and opening the car window and my hair done a, all come in a whirlpool and went out the window. All in like all in, after one of the treatments, and I thought, “Oh that’s great.” But my finger nails all went poison. 

 

What do you mean, went poison?

 

They went, they just went black and poison, and pus appeared underneath the fingernails. So I had to have those cut off. Then I had, the poison went up my arms, okay, so I had to go back into hospital and have those, have my finger nails removed, from a plastic surgeon. Feeling very, very sick, and this went on for about five months, of that, and it was just the last bit of the treatment and they just couldn’t do the last month of it. 

 

I had an, I had a bad episode during the chemotherapy, the trial, where the integrity of the veins collapsed in my tummy and they started to bleed. And this was another part of the side effects of it, and I had internal bleeding, which was scary because I lost quite a lot of blood.

 

Which trial was that?

 

This was, this was the, this was the trial with the virus, the one that’s every day for three weeks, and then a weeks break. That that scared me and I’ve not been scared all the time on that, I’m quite philosophical about what I’ve got etcetera okay. 

 

But that scared me because it seemed quite imminent, imminent that something had gone wrong, because my blood pressure dropped and at first I’d seen one doctor by my bed, then two, and then I remember, what’s the name, there was four. And, and then, and then the Professor that was looking after us trying to get a tube into my veins to give me some blood, okay. And then I got the feeling, “Ah something’s really quite wrong here, you know.” And it was because of the internal, internal bleeding into, into my tummy. 

 

Bob said that some of his doctors were excellent but with others communication was poor.

Was communication between you and the doctors [good]? Did you always get told the same thing by different doctors?

 

I’ve I think some doctors are absolutely excellent and a pleasure and it’s like in every, in every field, and some people are just not very good at communication.

 

Maybe they’re too busy, or they’ve just, just apathy. Oh it’s a job that they do. And then others, others, it’s a vocation, in some doctors. And then others it’s a job that they do to pick up their pay check at the end of the year, and that’s what they do for a living.

 

But you can’t generalise; you can’t say all the doctors are this, or all the nurses are that. You know they’re all individuals and they’re human beings and they, they’ve got their sort of, their frailties. 

 

But in general I think that they do, they do a good job. Communication could, could be better but it all depends on how pushed they are. I only see one side of it, I don’t know you know, if you’ve got six, eight, ten patients and then you’ve got someone who’s, there’s always somebody on holiday and all the rest of them, they’ve got all the filling in, so it’s very, very difficult. And it’s easy to criticise, and because you’re not well it makes you grumpy as well..

 

Bob got his chemotherapy through a PICC line (peripherally inserted central catheter). A syringe driver infused the drugs slowly. He had nose bleeds.

Yes, they take some blood out of the picc line, so there’s no pain, no distress involved in that. And send the blood away for analysis to see if your body’s strong enough to take another lot of chemotherapy. Sometimes it is, sometimes it’s not. A couple of times they’ve said, “You, your platelets are too low, you need to have a break.” So they give you a break for a week. Then you go back and then the platelets are usually good enough to have another lot of chemotherapy.

 

And it’s unobtrusive, its, you wear the thing on your hip. I just wear it in my pocket. It’s a bottle; it’s got a tube which you wear under your clothing. It goes into your arm. It’s not, not uncomfortable at all. 

 

And it’s gradually pumping all the time?

 

It’s pumping all the time, seven days, seven days a week, twenty four hours a day. 

 

For seven days?

 

For seven days. But because it’s so gradual you don’t get that kick that you get, that awful feeling of, you don’t get the nausea, the nausea and the sickness and everything else. And fortunately you don’t, I haven’t had no hair loss. And they said I would. You know. 

 

So what side effects have you had from this particular chemotherapy, nosebleeds?

 

Nosebleeds, yes. I think it was just because of the chemotherapy working on the veins to a certain extent, but I’ve only, I’ve been into hospital twice, most recently yesterday, the day before. So I’ve had two, two to three days in hospital twice during the whole process, where I can’t stop the nose from bleeding. And that’s uncomfortable having that done though. But as I say it’s its been worth it though because that this treatment, as I say I’ve had to take no painkillers or anything, all the time that I’ve had this. But the treatment comes to an end in next, well next week. So, I’ve asked what happens next. 

 

Bob was using his savings to cover the extra costs associated with ill health. He said, 'It's much more expensive when you're sick'.

Would you mind just summarising, you said the Maggie’s centre were wonderful. 

 

Yes.

 

What was the main thing that they helped you with? Was it the financial situations?

 

Yes and they told me I would be, did you know that you can, you can claim for this, and you can claim for that. I put in claims for it, I haven’t got anything yet. But it’s been, but they said you should have done this three years ago, it’s things that you’re entitled to that you’ve not…, but I always assumed that they were means tested, you know that’s always been at the back of my mind to think oh well you don’t stand a chance of getting anything you know, but apparently they’re not. Some of them are, you know, it hasn’t, on the financial side it amazes me how much, how much more expensive it is when you’re sick. And you think “Oh well you won’t have the, you won’t have the thing,” but it’s its amazing. 

 

You know, you know, this is a large place and this, another place over the road as well, so they’ve all got to be, they’ve all got to be paid for, and the rates on them, are just really expensive. So but I think one of, one of the, one of the major things, what’s the name, is just how expensive it is when you’re not working and when you’re sick, to keep up with the transport costs and all the bits and pieces, cars, driving around, getting people to, what’s the name, and getting taxis sometimes when, when, when you need to. Waiting around in hospitals, and etcetera, just how expensive it is, Being unwell is more expensive than being sort of working all day because you spend, you spend less [when working]. 

 

Because you can’t sit around the house all day, and there’s only, and because it, your energy levels drop you, you’ve got to now, I mean I’ve just paid what four and a half thousand pounds to have the place painted. Okay, now I would have done that myself, three years ago. I find that I do one, half a wall, and I’m exhausted. It’s you know, it’s just the way, the way the thing is you know. I guess, with the chemotherapy etcetera, it, you don’t seem to get your, the energy levels seem to drop. 

 

And then silly little things, you have to pay for somebody else to come in and do the electrics, somebody to come in and do decorating. And you can’t, you can’t do stuff that you’ve always been able to do. You know.

 

After Bob's operation some of the nursing was very good but some was 'awful'. Bob was particularly worried about hygiene and cleanliness.

What was the nursing care like?

 

It was, it was awful in actual fact. I mentioned to a nurse that sneezed three times while she was doing my dressing on my tummy, I said to her, “You need to wash your hands.” And she didn’t answer she sort of went and done it, but she was carrying on doing my dressing. And I said to her, “You need to wash your hands” and I heard her say to another one, “Oh we’ve got an awkward one here.”

 

To another nurse, you know, and I thought to myself, “I’m not being awkward, I’m just stating”, you know with all the kind of C-difficile and all the rest of it that they have these germs in hospital, and I’d just come from an operation, but she, I know that she was an agency nurse from somewhere or other, but I thought, “Well that was wrong”, that she was saying that I’m awkward, and that, number one, or fussy, I think that was, that was the word she used. Or I think both. And then the next one she was absolutely, an absolute love. You know really, really nice, caring lady you know.... 

 

You said the nursing care was awful, was it awful in other respects too?

 

The nursing side of it was, it was just adequate. Okay some people were very good at what they’d done, others were just, not very good at what they done. I’m used to organising things in what I do, and if I run the business like the NHS run their hospitals I’d be, I wouldn’t have a business, to be absolutely honest with you.

 

But then some of, some of them worked very, very hard and were fantastic. And it doesn’t seem to be a you know you don’t get, the product changes because people are different. One person’s different from another, etc. But the whole thing seems to me to be quite chaotic, lack of, lack of the structure, lack of accountability to a certain extent, nobody looking after the standards of hygiene number one, over the top in some, in some ways, and waste of money and then in others, really, really lax.

 

Looking at the small details and filling in the forms, seemed to be too much of that. Not enough of people just walking round with their eyes open, blood on the wall, okay, there from the time that I arrived there, and tea spilt in the ward when I went to the recovery ward. There was, tea had been spilt on the floor, two days later okay, the tea stains are still there. Okay that means nobody had been in, they go around with a fluffy mop that moves the dust from one place to another, doesn’t do anything you know. You clean floors with water, a mop and that cleans floors. Moving dust from one place to another with one hand doesn’t, okay.

 

The cleaners had no direction. They’re not under the auspices of the nurses. The nurses should be telling them what they want done. They work for a separate company which are, which are franchised in, brought in by the NHS. And I just don’t think there’s enough control of how the place is cleaned, not at all.