William - Interview 03

Age at interview: 49

Age at diagnosis: 49

Brief Outline:

In February 2009 William had jaundice. In April a stent was inserted into his bile duct, and the doctor did a biopsy of his pancreas. Cancer was diagnosed. In June, he had a Whipple's operation. He is now having a six month course of chemotherapy.

Background:

William is married and has 2 children. He is a lorry driver (not working due to ill health). Ethnic background/Nationality: White British.

More about me...

In February 2009 William’s brother died from a heart attack. William’s GP asked him to have an ECG and some blood tests, just to make sure that his heart was healthy. His GP asked him to repeat the blood tests and then told him that he had jaundice. William saw a consultant, who told him that the jaundice was probably due to an allergic reaction to some penicillin that he had been taking.

Three weeks later William’s jaundice was worse. He looked yellow and felt itchy. William was not in pain but he was losing weight and felt very tired. He lost more than two stone.

A doctor told him to stop work and planned some tests but he had to wait three weeks for them. He had an ultrasound test and then a CT scan, but they didn’t show anything wrong. William left hospital but he readmitted himself a day later because he felt so ill.

The hospital doctor did an endoscopy under local anaesthetic. William was also given a sedative and he fell asleep. The doctor put a stent into the bile duct so that the bile could drain from William’s liver. At the same time the doctor noticed that there was a growth on William’s pancreas and did a biopsy. The next day the doctor told William that he had the growth. She said that she thought it could be removed with surgery.

A group of doctors discussed William’s condition as he lay in bed and William heard a junior doctor mention that his condition was ‘terminal’, which was a great shock. The consultant told William that he thought that the growth could be removed, and he gave William some hope that the situation was not as bad as he had heard, and sent him home to try to gain weight while he waited for major surgery.

William saw the surgeon who was going to operate. The surgeon explained the options and what a Whipple’s operation would involve. William decided to have the surgery. The operation took place a few weeks later. It took over seven hours and was more complicated than expected. After the surgery William was in a lot of pain and had to take morphine. He started drinking and eating small amounts of food about seven days later.

William and his wife went back to see the surgeon, who told him the upsetting news that it was unlikely that he would live more than five years.

He was offered chemotherapy and told and said that there was a chance that it would cure the cancer. William started chemotherapy and was just over halfway through a six month course when we spoke to him. He has chemotherapy every Wednesday for three weeks and then has a week off treatment for his blood to recover. The treatment does not make him feel sick but he feels very tired.

Recently William became ill with a liver infection. He had to return to hospital to have intravenous antibiotics. At the same time he was given two units of blood. He discovered that people who have had a Whipple’s operation are more susceptible to liver infections because they no longer have a valve at the end of the bile duct.

Three weeks ago William had a CT scan which looked good. He will finish his chemotherapy in January 2010 and will then have another CT scan to make sure there are no more cancerous cells.

William takes one day at a time and tries not to think about the distant future. He still experiences pain as a result of the Whipple’s operation. He takes tramadol and paracetamol for the pain. His bowels have also been affected and he has discomfort due to wind.

We spoke to William in 2009.

William's surgeon told him that he could have surgery or chemotherapy or do nothing. William decided on surgery.

On the 28th of May I went to see the consultant that was going to operate on me. And he explained everything. He gave me various options. I think it went up to five different options of what could be done. And one of them was, “Do nothing.” And I said, “Well, what would happen if I do nothing?” He said, “I expect you, you would die within a year.” And he said, “We can operate on you, and I’ve got a 7 per cent chance of you dying on the table.” And we went through all the options. And then he, he drew on the back of the folder exactly the layout of my internal organs. And then he, he drew a line through everything that he was going to cut out, gall bladder, head of my pancreas, the duct out of my liver, intestines. And then he was going to re-route them in this particular order and everything would be fine.

 

So that was the second option, major surgery? What were the other three?

 

I can’t remember. But chemo was one of them, but by now your head’s spinning and it really is difficult to keep a grasp of what you want. Because at the end of that meeting I had to decide what I wanted to do. I could walk out of that surgery and say, “Thank you very much, but I’m not going to do anything” or, “I’ll have chemo.” So I elected for surgery.

 

William asked someone from the Citizens Advice Bureau to fill in the forms for getting the Disability Living Allowance.

In the end, and then because my bilirubin was going up and my actual red blood count was going down and I was short on vitamin K, he was actually pointing out that if I did have an accident whilst driving, I’d probably bleed to death. So that was the Thursday night conversation with my GP. I went out on the Friday for work, got to lunchtime, and went, “I can’t do this any more.”

 

Does the company look after you now that you’re ill?

 

The company looked after me not one bit. They said they’d support me as much as they could, and then the first week I got paid statutory sick pay, and that’s it. And I said, “Well, I’ll come back to work.” And they said, “You’re on chemo?” And I said, “Yes.” They said, “Not until you’ve finished your chemo.” So it’s, now, now, because I’ve had a back-to-work interview, I thought was very funny and, because they’re now worried about my well-being. And I’ve decided that when I finish chemo, so this is a positive, when I finish chemo in February and when the scan comes back clear, I will then take three months myself to get myself back to a f-, level of fitness where I can go back to work. So whether they want me back in March, they’re not getting me, because it’s about me now. I worked weeks beyond where I should have said to myself, “Right, you need to stay at home” and I never got anything from the company. So why should I go back underweight, no energy? So why not take a couple of months off?

 

So that’s been, has that been very hard financially?

 

I knew we’d get to finance. It is very hard financially. But I’ve got Disability Living Allowance. And anyone who has the start of pancreatic cancer, I suggest they go in to any of the charities that support cancer, Macmillan Trust will give you financial help, and get as much information as you can. And I just get Disability Living Allowance. 

 

Did anybody help you get that? How did you go about getting that?

 

My local charity said that they have, Citizens Advice Bureau comes in on a Thursday afternoon, and they said, “If you want, go and see her.” So I booked an appointment, went to see her and sat down and told her my household income. And she said, “Right. You’re entitled to that.”

 

Did she help you fill the forms in?

 

Oh, she filled the forms in. I just signed it.

 

William was receiving the higher level of Disability Living Allowance so the government very helpfully paid his road tax.

And, you know, I’ve got, because I can’t walk very far I’ve got a disabled badge, which is brilliant because I can’t walk that far and I tire out.

 

That’s for the car?

 

For the car. For the, because I’ve got Higher, Higher Level Disability Living Allowance, the government will pay for the Road Fund Licence. Well, that was £100, brilliant, just before Christmas. “Thank you.” You know, I’m looking forward to handing it back and saying, “I don’t need it.” So there’s a look forward.

 

William described what happened when he had chemotherapy. He liked the atmosphere in the clinic and said that people tried to make it pleasant.

What happens on that Wednesday?

 

You go, I start the cycle by having a blood test on the Monday. And then on the Wednesday they look at the blood test and then so long as everything is okay they’ll give me the chemo. And they put my hands in hot water to make the veins come up and then they put the cannula in, in one of the veins which they’re happy to put in. And they flush it through with a solution while they wait for the pharmacist to mix my chemo. Because the hospital I’m at doesn’t buy its chemo in, it actually mixes it themselves. And that can be a two-hour wait, sometimes three hours waiting for the, the chemo to come down from the pharmacy. And all the time you’ve got a slow drip just going through your cannula. And then they come with the chemo. And that chemo bag takes twenty minutes. And after twenty minutes they just flush through the tube and then you’re free to go. Take the cannula out, put a plaster on the, the spot, and then you come home. So the whole procedure can take three, four, sometimes five hours.

 

And the staff in that department?

 

Rushing around, overworked, very pleasant. And the cancer charity comes round making people cups of tea and if you’re there at lunchtime they bring you a sandwich. And there’s reading material. There’s a DVD you can borrow. So it is made as pleasant as it can be. But it’s all right. You can’t complain. You start to know people. So, you know, the Wednesday team, you see the same people, so you strike up a relationship with them.

 

William decided that if patients really want to obtain useful information from their doctors they have to 'pitch the questions to get the answers'.

And it’s the same as talking to your consultants. If you want the right answer, you’ve got to work out the correct question. If you ask a consultant, “How am I getting on?” he’ll say, “Oh, you’re fine.” When I found out that someone had pancreatic cancer, they had chemo, they were clear for two years and then the cancer came back, I went to my consultant and I said, “What happens when the cancer comes back?” And he didn’t want to answer the question. I said, “Well, it must come back. Therefore you must go back on chemo.” He said, “Well, normally it comes back as liver or lung cancer. If pancreatic cancer spreads, it spreads to your lungs and your liver.” “Thank you.” But I had to pitch the question to get the answer. Because you can’t, if you ask a generalised question you won’t get an answer off them. They, they just don’t want to let you know. It’s almost as if, “Well, I’m the consultant, and you’re not clever enough to deal with the answer.”

 

So it’s been quite difficult sometimes getting the information you wanted?

 

Yes. And I’ve always gone to them and said, “Look, let’s be honest, let’s be upfront.” And it did backfire when I got my biopsy results, because he was rather blunt.

 

William's surgeon had told him that he had an operable 'tumour', so William was shocked to hear a trainee doctor say that he had a 'terminal' condition.

I was sitting in bed feeling particularly unwell, a lot of pain, a lot of air in my system because they blow you up with air, and I was on morphine. And the consultant came to my bed, with the nurse, and said, “Would you come down to have a little chat with us?” And took me into the side room and told me that they’d found a growth on my pancreas and it was, it needed to be removed, and I’d be taken down to [the city] very soon and have it, have it removed. And at that point I wasn’t really told that it was terminal. I was, I just thought it was a growth, a tumour. You know, “Cut it out. I’ll be fine.” And it was only on the 5th of May when we had the doctor’s rounds that someone actually mentioned it was terminal.

 

In a doctor’s round?

 

In a doctor’s round.

 

Can you describe what happened?

 

The scene is I’m in my bed. I’ve the consultant on my left with a descending order of rank to the most junior doctor on the right. And my consultant was talking to me, and somebody on the far right mentioned that it was terminal. And I spoke to my consultant. I said, “Terminal?” And he said, “Pardon, Mr …”. And I said, “Someone down here on the right mentioned that it’s terminal.” And he said, “No one’s told you?” And he said, “Who mentioned it?” And it was just a scene from Monty Python, where everyone started looking at their shoes and, and shuffling about, because no one would admit that they’d said it. But, yes, that’s how I found out it was terminal. 

 

So after the doctors were all round you, you had this confusing conversation, how were you feeling at that stage?

 

Pretty low, pretty distressed. And a nurse from the ward came along and said, “How are you?” And I said, “Well, I wish someone would tell me the truth of what’s going on.” And they said, “Well, have you spoken to your link nurse?” I said, “Well, who’s my link nurse.” And they said, “Well, we’re going to get hold of him.” And at 1 o’clock they asked me if I could get dressed and sit in the ward because they needed the bed. So I sat in the corridor of the ward and my link nurse turned up and had a chat with me and then said, “Well, come and see me in two days’ time.” So I came back on the 7th of May for a chat with my link nurse. And I’ve been speaking to him on a regular basis.