Ben - Interview 31

Age at interview: 40

Age at diagnosis: 39

Brief Outline:

Ben was diagnosed with pancreatic cancer in 2008. It was not possible to do a Whipple's operation so Ben took part in a clinical trial called the TeloVac trial. He had vaccine injections and chemotherapy for about a year. Now he is just having chemotherapy. He feels tired.

Background:

Ben was a Care Worker before he was registered disabled and had to retire due to ill health. He is married and has 4 children. Ethnic background/Nationality: Black British.

More about me...

In July 2008 Ben noticed that he was bleeding from his bottom and his poo was irregular. This continued on and off until October, when Ben decided to see his GP. His GP arranged for blood tests. These tests showed that Ben had a problem with his liver and his kidneys. The GP also arranged for Ben to have a scan, but the appointment was not until December.

 

In November Ben noticed more bleeding from his back passage. He decided to go to his local hospital, where he was admitted for an ultrasound scan, a CT scan and an endoscopy. During the endoscopy the doctor inserted a stent and took a biopsy. Ben was in hospital for 12 days.

 

On the 18th December Ben attended an outpatient clinic, where the doctor told him that he had pancreatic cancer. The doctor thought that Ben had already been told this news. Ben was on his own when he got this bad news and he felt very shocked. It was terrible to hear this diagnosis just before Christmas. Ben then had tests to make sure he was fit for surgery. The surgeon planned to do a Whipple’s operation. 

 

Ben had surgery, but when the surgeon opened him up he saw that the tumour was joined onto some blood vessels, so the Whipple’s operation was impossible. When Ben came round from the anaesthetic the doctor told him and the family that the operation had not been successful. 

 

Ben seemed to be recovering from the surgery but then he started to be sick. He had to have another operation to clear a blocked intestine. Ben was in hospital for four weeks. He was nursed in a side ward because he had the infection, MRSA.

 

Ben went home and had great family support. The community care nurse took out his staples, and the district nurses called regularly too. They still visit every three months to make sure Ben is alright. 

 

In January 2009 Ben was given six to twelve months to live, which was depressing. In March 2009 Ben started on the TeloVac trial. As part of this clinical trial he was given chemotherapy tablets (capecitabine), a chemotherapy drip (gemcitabine) and vaccine injections. Ben had a skin reaction to the treatment, so was given Piriton (anti-allergy medicine) through the drip.

 

At the end of March 2010, nearly 12 months after the treatment started, Ben had a serious side effect due to the vaccine. About forty minutes after an injection he collapsed, felt dizzy and had difficulty breathing. 

 

When we spoke to Ben he was still having chemotherapy, but no vaccine injections. He was not due to see the consultant again until August. Ben was worried about whether he is still part of the trial. He didn't think he was being monitored or having as many CT scans as he was previously. He felt that he had been put on the ‘back burner’. Ben would have liked more information about his situation. 

 

In May 2009 Ben got married. He was finding it hard to walk far and tended to stay at home. He missed his job and found it hard to motivate himself. He spoke to a psychologist, which he found very helpful. He was able to talk about his problems. 

 

Ben was experiencing pain in his abdomen and in the groin area. He took morphine and other painkillers when necessary. He also took Creon to help with digestion. Ben was trying to keep smiling and hoped that good new treatments would be available for him when he needed them. His family gave him great support.

 

We spoke to Ben in 2010

 

Ben was on the TeloVac trial for nearly twelve months. He had chemotherapy and the vaccine. He had a bad reaction so had to stop the vaccine.

So about a week later, after they operate, two weeks two three weeks after the operation the specialist trials nurse got back to me and said, “You’re being put onto trial arm three.” Which was the top, I don’t know if you can call it a top, the most extensive treatment.

 

With the vaccine.

 

With the vaccine, yes. So that went that was going well and then I think it was, I’ve got a feeling, no, I think it was just around December I started off with a slight allergic reaction to it, but they weren’t overly concerned about it, to these two injections. So they kept it up to go and then it started gradually getting worse again so they started putting piriton, they put the piriton through the drip.

 

Piriton.

 

Piriton, yes, to try and bypass these hives that were happening.

 

You were having some sort of skin reaction.

 

Yes. ...I think it was March when, either March or towards the beginning of April, I had these injections and you had to wait an hour to, you can you can go and come back sort of thing but you needed to wait an hour for them to check the site to see what it was like, to see if there was any bad reactions to it. So I went to the, I went to get a coffee.

 

And I came back up to the clinic. As I was walking back up to the clinic I had to go up these stairs because it was outside, obviously, and I went to, I nearly fell down the stairs. I just started feeling strange, sweaty.

 

Very strange but I managed to make it up to the clinic. Spoke to the receptionist and said, “I’m back to see the nurse.” And she said, “Okay. Just take a seat.” But then she said to me, “How are you doing anyway?” I said. I got back up to speak to her. I said, “I’m doing fine. We’re going great.” And then felt like I tumbled, just sort of collapsing and my breathing went laboured. I felt very dizzy so slowly walked down to where this nurse was, who I was supposed to see, and she took hold of my paper work, took me into see the doctor and then I was put onto a bed and was given injections, steroids, obviously, to combat this reaction that I was having, oxygen and bloods taken. I think I ended up staying in the side of the clinic on this bed for another three hours until just everything went down because it was quite scary, scary. Literally, everything was just like it was shutting down.

 

Did they think that was a side effect of the vaccine.

 

It was a side effect.

 

Or the chemotherapy?

 

This was, they think it was the side effects of the vaccine because, obviously, they need to build them up.

 

But they didn’t expect it to go to the extent.

 

How many months had you been having it then?

 

Oh, nearly twelve months.

 

Ben worried about the future ' he knew he was 'living on borrowed time'. Sometimes he had abdominal pain and he often felt very tired.

So how are you feeling now? Do you have to take any painkillers now?

 

Now and again I do. Basically, I take a solution, Oramorph because it’s morphine based. I take about two spoons of that if and when needed and I also take the dihydro-codeine, which is like thirty milligrams, little tablets. I also take the chemotherapy tablets….

 

So do you sometimes have pain in your abdomen?

 

In the abdomen, in there, yes.

 

Really on this side, basically, where the pancreas is, just behind the back there somewhere.

 

That’s where the main pain is, sometimes on a Tuesday after treatment. It’s strange because it comes and goes this one and I suppose it’s as the solution is going through your system, sometimes you get pains in the groin area.

 

Oh.

 

Which happens or it doesn’t happens. It’s strange [laughs].

 

Sometimes it’s there and sometimes it’s not. The main other thing is tiredness, just very tired.

 

But that’s with everything else with cancer it’s just one of those things, you can become tired, quite tired and lethargic but, anyway, my sleeping patterns are a joke. I just go to bed at twelve o’clock and wake three or four times through the night. No pain or anything, just will wake up.

 

Like last night I went to bed at one and I was awake every hour up to half seven, eight o’clock this morning when I had to get up. You know what I mean, sometimes I’ll just get up and sit downstairs on the computer and do something.

 

Do you worry about the future?

 

Yes, always. I try not to but what can you do.

 

Yes.

 

Because you know that at the end of the day you’re living on borrowed time, basically.

 

Ben's family and friends had helped him to 'stay positive'. They had helped to organise his wedding and an ex-colleague had surprised him with money.

I don’t know, it’s just well, I’ve lost all interest, basically, but in saying that, without the friends and family around me, you know what I mean, I could easily have gone, “Oh, I give up. I don’t want to carry on.” And I think that’s part of the battle as well if you stay positive, mental attitude.

 

The family have been brilliant. You know what I mean, but, you know, we grow older together makes us stronger, you know what I mean. And I really had help especially when it comes to the wedding and organising the wedding. We didn’t have a clue. 

 

We wouldn’t have, without my eldest sister we wouldn’t have had. She took the photographs, the cars, the all over she took all over.

 

Everything?

 

Yeah, and the best, biggest surprise was the pair I used to work for. I was walking past the office to go to see a relation, my wife and he pulled into the car park so I spoke, was speaking to him. He said, “What are you doing?” So I was just talking generally about health and that. I said, “I’m going now.” He goes, “Just hang on a minute.” And he pulled out this big wad of money and went, “Take that.” I was like, “Okay.” So I didn’t bother counting it in front of him because I thought that would be rude, you know what I mean. I got home and it was almost five hundred pound. I was like, “Oh my God!”

 

Ben took part in the TeloVac trial, during which he had a scan every three months. After it ended, his doctor's appointments and scans became less frequent.

And then what about CT scans? You had CT scans.

 

Oh, CT scans, lovely things, the polo mint [laughs].

 

Yes oh, gosh. I must have had now with the treatment, from the start of the treatment I think we’re up to the fifth CT scan, which is due in the next couple of weeks. I’m due another one because they usually do one every three months.

 

The first one was eight weeks at the start of the treatment. Then it went to twenty weeks and then so on and so on so we’re up to I think we’re on week fifty six, fifty eight now. We’re on somewhere around there and then it’ll be another three months, which is quite good going considering they were saying six to twelve months.

 

Even though they only say that as a guess, you know what I mean. They can’t, obviously, tell you, you know, “You could be here in six to twelve months or you may not be here in six to twelve months.” So they’ve got to give you some sort of guidance.

 

And then they took you off the trial.

 

They took me off the vaccine part of it.

 

But now they’ve said, because it’s been two or three months since that, when I last spoke to the trials nurse she said, “We’re taking, the protocols have changed to this treatment.” I said, “Well, What does that mean?” She goes, “Basically, we took you off the vaccine.”

 

 “So you’re sort of no longer part of the trial.” Which she’s telling me. Well, if I’m still not part of the trial why am I still getting the chemotherapy and the tablets because as I understand it, if the part stops of the trial you would be offered some other treatment. Well, again it’s changed with I won’t see the doctor now until the third of August.

 

Whereas I used to have the three weeks treatment then the first week back you’d see the doctor. So now I’m like, well, I don’t know what’s going on. I’ve asked the questions and seemed to be getting the same thing, “Oh, the protocol has changed.” So I’ve asked the Macmillan nurse to see what he can find out.

 

And he’s tried to find out what’s going on. As I said, I should be due in the next four weeks, a CT scan. It’s not going to happen because I don’t see the doctor now and I don’t see the trials nurse unless he’s, I want to speak to him. 

 

After Ben had surgery the district nurse called at his home to remove the staples from the incision. The nurses also listened to Ben and offered support.

So anyway we got this discharge after the four weeks. Everything went well. 

 

Came home to stay with my mum because obviously, we had stairs so it was easier for me to stay here than me try to climb stairs. So mum helped out and had the children to come and stay here and my wife and that they all came as well, sisters, my brother was around, good family support, friends and so on. And then with the job I was working in community the community care, the district nurses who came out to remove the staples, were actually people who I help them look after the... And one of the guys who I was quite good friends with turned up on the Saturday morning to take the staples out and that. “I’ve come to see so and so.”

 

Come to what?

 

Come to see come to see me but he didn’t realise it was actually me who he was coming to see.

 

Oh, I see.

 

So he was like, “Hello, mate. What happened?” I said, “Well, here I am still fighting, slow, you know, just unfortunately it’s me you’ve come to see.”

 

So we had a good chat then and that made it easier as well because, obviously, I’ve known him from the past with working in the community and that so I we had a good little chat and he took the staples out. And then, two or three weeks later, the district nurses were there for support as well as making sure the wounds were clean and no problems. And they said, “Well, there’s nothing else we can really do for you now. Is there anything you want? If there are any problems in the future, just give us a call.” I said, “Well, instead of discharging me from yourselves why don’t you just come out every two weeks or I can phone you every two weeks and give me an update on how things was.” And the team leader said, “Yeah, that’s no problem.”

 

So we’re still in contact from say February last year to now, they come out every three months now or if I need anything, I can also ring them.

 

Because my motto is, “If you’ve got something in place and you know you will need it in future, why discharge yourself from it?”

 

Ben noticed that he had loose poo and bleeding from his bottom. After about three months he went to see his GP.

So the only symptoms you’d had so far was the bleeding?

 

Was bleeding through the back passage, yeah.

 

No pain?

 

No pain, nothing just this bleeding through the back passage.

 

Had you had any stool, problems with your bowels, your stools?

 

Yes, it was loose, bit loose and bleeding. It could happen at any time of the day but.

 

As I said, they weren’t overly concerned about it. I just thought it would be something that would pass but, obviously, time between the July to the November, I don’t know, I thought I was fooling myself because I wasn’t a person who wanted to go to the doctor’s for something that I thought was trivial. 

 

So you started to have the problem in July?

 

In July, yeah.

 

And you didn’t actually go to the GP?

 

GP until the around the, I would say the October.