Fred - Interview 38

Age at interview: 64

Age at diagnosis: 63

Brief Outline:

In 2009 Fred was diagnosed with pancreatic cancer. He had a Whipple's operation and is still recovering. He has developed a hernia on the site of the incision. He has a positive outlook and hopes that soon he will be well enough to play golf and swim again.

Background:

Fred was a college lecturer until he retired in 2009 due to ill health. He is married and has 4 adult children. Ethnic background/Nationality: White Scottish.

More about me...

For two or three years Fred had an uncomfortable feeling when eating. He found it hard to eat because food seemed to get lodged in his food pipe; it seemed to back up into his throat. He often felt bloated. Sometimes Fred had burning pains in his chest and trouble sleeping. His doctor thought he had a hiatus hernia and gave him some Gaviscon. Fred had also been passing blood from his bottom, and he was being treated for haemorrhoids. At times he noticed that he had pale coloured diarrhoea.

 

In late February 2009 Fred had pains in his chest and he felt very bloated. His wife phoned the doctor, who called the paramedics. The paramedics thought that Fred was having a heart attack. In the ambulance Fred was sick and brought up blood. In hospital Fred was told that he hadn't had a heart attack. At this time his poo was dark coloured. He was kept in the hospital for three weeks for CT scans and other investigations. The doctors told him that he might have a problem with his bile duct. They transferred him to a specialist hospital for more investigations.

 

In the specialist hospital Fred had more scans and an endoscopy with an ultrasound. The doctor also did a biopsy. After this examination Fred was told that he had a tumour, which involved his bile duct, pancreas and stomach. The doctor recommended a Whipple’s operation. This was a very distressing and frightening time for Fred and his family.

 

In April 2009 Fred had the Whipple’s operation. He was in the intensive care unit for about two weeks. He was in a great deal of pain and reacted badly to the morphine. Tramadol seemed to help a bit, but Fred also reacted badly to this. Fred had intravenous fluids. He also had a naso-gastric tube, drains and a catheter. Fred started to eat and drink by mouth after about two weeks. After being in the intensive care unit Fred was transferred to the main ward. About a week later he went home, where he slowly got better.

 

Fred still has pain or discomfort where he has his surgery scar, and he also has a hernia. This hernia developed on the site of the incision about two months after the operation. He is having physiotherapy to try to strengthen his stomach muscles. Fred is gradually getting stronger. He takes Creon to help with his digestion, but he still gets a lot of wind and discomfort in his stomach and intestines. He finds that Movicol helps.

 

Fred had to give up his job due to his illness. This has led to money problems. Fred has found it hard to get any benefits. He lost some of the ones he was entitled to because he applied too late. This has all been very stressful. However, he has had great support from his family and friends and from a cancer support centre and from the Citizen’s Advice Bureau.

 

He has a positive outlook and hopes that soon he will be fit enough to play a round of golf and to go swimming again.

 

We spoke to Fred in 2010 

Fred had a burning sensation in the chest. The doctor diagnosed a hiatus hernia. When the pain got worse paramedics suspected a heart attack.

Well, it’s hard to say when it all started. But in the past I had pains in my chest and trouble sleeping and my food seemed to be lodged in my, just in my stomach and above and it backed up into my throat. So I was then getting treated for hiatus hernia. I was taking tablets for that, to help it. I was also having trouble with haemorrhoids, and that’s where I first was diagnosed with that and I was getting treated for that. I had the feeling, in just early 2009 I had pains in my chest, very very bloated feeling and I was very uncomfortable. It was a Saturday and it was late February. My wife phoned the 24-hour doctor and they sent the paramedics to the house. And the paramedics thought that I was having a heart attack, because it was all round my chest area. 

 

Did your stools look different?

 

They did. They were actually, it was, a lot of the time it was diarrhoea and light coloured. And one of the symptoms that I was told if you’ve got something wrong with the pancreas or liver was jaundice. But I didn’t have jaundice at all. I’ve never had that. But just the bloatedness and the feeling of burning sensation in the chest area and the, not getting the food moving was, was all I had all the time. And I had to watch my diet.

 

The physiotherapists helped Fred to get out of bed and to walk using a frame. They encouraged him to go up and down the stairs.

And did you have physiotherapy in hospital?

 

Yes, well, the, the physiotherapist came to see me and they tried to get me up out of bed. Apparently I had fluid in my lungs because I was lying so long. And they got, they got me up and standing up. I couldn’t have stood up myself. And then after a couple of days they brought one of the little frames that, to, to support me. But after a day, I didn’t need that. I went for a walk along the ward, just back maybe 20 feet or so. I did that for a couple of days and then I got better and better and I went out to the corridors. And the physiotherapist came a couple of times, and then they said that I was progressing but I, before I got home I would have to go up and down the stair. Which they, they supported me and then I was able to do it myself after that. So these were little things that, that helped in the recuperation period.

 

So how long were you in hospital altogether?

 

I believe it was, the, both hospitals?

 

After the operation?

 

After the operation was roughly three weeks. Roughly three weeks I was out.

 

Worry about his financial situation and having to appeal to keep his Employment and Support Allowance had been a very negative experience for Fred.

We had lots of problems. I lost my job because my salary stopped and I was getting employment support, which was very, very little and I didn’t have enough income. Well, the Maggie Centre helped me there, the welfare rights. Christmas time I was sent, because I had gone on to employment support I was sent to an assessment and they deemed me fit to work. And the Maggie Centre contested it and appealed against it, and I’ve now got to go to a tribunal to discuss whatever this, I don’t know what the outcome will be. But when, when I was recovering, things like that really set me back. It’s one of the things that were very, very negative in my whole experience. I didn’t get any help at all from the Department of Works and Pensions. I think it’s very bad.

 

Who makes the assessment whether or not you’re fit to work?

 

It was a trained nurse. And because I was able to get the bus to the centre, although I was in a lot of pain, they, you’re supposed to get 20 points and I didn’t get any points. I told her at the time that I was in pain, and there was never any mention of that in the report that came back to me. So there was a lot of negative stuff there. So you don’t get help there. 

 

The Citizens Advice were very good. Because I didn’t know anywhere to go and I went there, I was advised to go there and they helped me. And they, they’ve just informed me of different things, what, how to go about things. But I feel that there, there should be help for, for people that, I mean I’ve worked for fifty-nine years and I feel that in your time of need you don’t have any help.

 

So have your government benefits been cut off?

 

Yes, the, I was on Disability Allowance, but it was three months before I went on to that because I wasn’t aware. And when I was advised to go on that, they, they wrote the letter to tell me that I had appealed, or I had enquired three months too late. I’ve lost all that benefit.

 

At first Fred had a check-up every three months. Now, just over a year since his operation, he sees a nurse every six months. He has not had a CT scan since surgery.

Since the operation, how often do you go back for a check-up?

 

I go every six months now. It was, after the operation it was three months, and now it’s every six months. And I go to the clinic. They check, they take all your blood and they ask you how you’re feeling and your, how your medication, and just touch base with you and see how you’re doing.

 

Have you had another CT scan since the surgery?

 

No, I haven’t had any scans since.

 

So just to go back to when you go back for your check-ups now. They, what do they do? A blood test?

 

The blood test, test. They check your weight. They ask you how you’re feeling, how’s your appetite.  They don’t check your wound and they don’t check your, unless you specifically say you’re having problems.  So, so it’s basically just a check to see -

 

Is that with a nurse or with the consultant or a doctor?

 

It’s usually with the sister, the sister that meets you, and other nurses take your weight and your height and, and how you’re, how you’re feeling.

 

So you don’t always see the doctor?

 

You don’t always see the doctor. Most of the time you don’t see the doctor, unless you say there’s something like pain, they, they check you.

 

 

Fred could not have managed without his faith. He slept with his Bible under his pillow and knew that he was being protected.

Did you look for information anywhere else before the operation? Did you look at the Internet, for example?

 

My wife did. I was too frightened to, to, to look at things. I didn’t really want to know. I’m religious and I wanted to put myself in God’s hands for whatever was going to come. And that’s what I did.

 

Did you pray that everything would be all right?

 

Yes, I prayed like I’ve never prayed before. And I slept with my Bible under my pillow every night. And I know I was being protected.

 

So has your faith helped you?

 

Yes, it has immensely helped me. I don’t, I couldn’t have done it without my faith, yes.

 

Fred found the MRI scan 'very frightening' and claustrophobic. He found the CT scan 'scary' too.

Could you explain what it’s like to have an MRI scan?

 

Very, very scary, very, very frightening. You get headphones to put on so that they can, the person can communicate with you. And when you go inside it, it’s like lying in a, I would think the closest thing to lying in a coffin. You’re very, very enclosed. It’s very claustrophobic. And they, they play music in your earphones. I believe now, somebody told me, the outside of the scan turns round but you’re static. But that is very frightening. And I’ve spoken to people, patients in the ward afterwards, and they had to be taken out. They were too claustrophobic. I was able to, to last out, the both times that I had it. But I can see where they’re coming from. It is a, a very enclosed area. The CT scan is another scary thing because they inject you with a fluid and it goes right through your system. You get very, very hot feeling and it can be quite scary as well with that. So, but, you know, you, as long as you try and overcome your terror. It is a scary thing.