Rory - Interview 41
Age at interview: 66
Age at diagnosis: 65
Brief Outline: In February 2009, after long delays, Rory was diagnosed with pancreatic cancer. She had secondary tumours in her liver. She is on the TeloVac trial, having chemotherapy and vaccine injections. Apart from treatment days and the following day she feels well.
Background: Rory is a retired teacher. She is married and has three adult children. Ethnic background/nationality: White British.
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In the spring of 2007 Rory had a pain in her side under her ribs. She went to see her GP, who agreed that it was probably due to a pulled muscle, and who suggested paracetamol. About the end of May Rory experienced the same pain, particularly at night. Again, her GP thought it was due to a pulled muscle and again suggested paracetamol. The pain continued though the summer. In September Rory returned to her GP. This time her GP examined her carefully and said that she would refer Rory to a specialist hospital so that she could have her heart checked out carefully.
Rory went to see a heart specialist, who did a number of tests and concluded that her heart was fine. The pain went away for a while and Rory assumed her pulled muscle had recovered.
Just before Christmas 2007 the intermittent pain returned, especially just before bed at the end of the evening. Rory went back to see her GP, who thought it might be a digestive problem, so prescribed medicine to take before meals.
The pain continued, so after Christmas Rory’s GP decided to send her to the hospital for an ultrasound to make sure she didn’t have gall stones. The scan looked clear and the pain went away for a while but soon returned.
In January 2008 Rory went back to see her GP and again complained of pain. This went on until the summer, when the pain got worse. Rory went back to see her GP who decided to do some blood tests. These were all normal, but Rory felt that the pain was still ‘in the background’ all the time.
In September 2008 Rory went back to her GP and said that she was worried that there might be something seriously wrong. Her GP decided to refer her to another consultant. Rory saw the specialist in October, who did an endoscopy. In November she returned to see the consultant, who said that he wanted to do more tests.
In early 2009 Rory had two CT scans and when she saw the consultant again in February he said that he was glad to say that she didn’t have cancer but that maybe she had a hernia. He said that he wanted to do further tests. Rory felt very relieved and went home.
That evening a nurse phoned and said that the consultant wanted Rory to return to the clinic the next day. Rory went to the clinic with her husband and the consultant told them the shocking news that having looked at the CT scans again it was evident that she had pancreatic cancer. The cancer was situated in the middle of her pancreas. The CT scans also showed that she had secondary tumours in her liver.
The consultant referred Rory to a specialist hospital, where she saw another consultant and where she had another endoscopy and a biopsy. After the biopsy Rory had severe pain and had to be admitted to hospital for three days.
Rory left hospital and was referred to another consultant. This consultant told Rory that chemotherapy was one possibility and that she might be eligible for a clinical trial that was taking place at another hospital.
Rory saw this consultant and was invited to take part in the TeloVac trial. Now she has injections of the vaccine as well as chemotherapy (gemcitabine). She has the treatment every Monday for three weeks of each month and then she has a free week. She has the chemotherapy on all three Mondays and on the third Monday she also has the vaccine.
Rory has had 70 sessions of chemotherapy, which is given to her via a portacath. She feels very nauseated after the treatment, and is very sick after the vaccine, but she feels that it is worthwhile because there has been a slight reduction in the size of one of her tumours. The other tumours have not grown. She has a CT scan every three months. Rory has tried many antiemetics to help with the nausea. At the moment she is taking ondansetron. She hasn’t had any other serious side effects of the treatment and has not lost her hair. However, recently she had a DVT which might be due to the chemotherapy. She is now taking Clexane to prevent further blood clots.
Rory takes a low dose of oral morphine every day and is not in any pain. She has had wonderful support from family and friends and lives every day to the full. She travels to Europe and often has a short holiday in between her treatments.
Rory was interviewed for Healthtalk in 2010
Rory had intermittent pain under her ribs on her left side for over a year. It was particularly...
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I felt that I’d pulled a muscle in the left hand side of my body, and I’d been doing quite a lot of gardening and I’d been lifting a compost heap and so the pain in the side of my body seemed sort of uncomfortable. And I went to my GP and she said, “Yes, I think you’ve pulled a muscle”. She examined me and said, “Take some paracetamol”. And that was it.
Where was the pain exactly?
In the left hand side of my rib really, just under my rib.
And you know, the pain seemed to go away. In the summer the pain returned and I’d been watering the garden with heavy watering cans and once again went to my GP because the pain got worse, particularly at night when I was lying down. And she said, “Well, you know, you’ve obviously been over-doing things a little bit” and she examined me very carefully and said, “Well, you know, I think you have pulled a muscle and just take some paracetamol and, you know, that should do the trick”. Well, it didn’t and the pain got worse. So we were away in the summer, and I returned in the September to see her and said, you know, “This pain is not going away”.
It wasn’t a sharp pain, it was just an uncomfortable pain in my side and was particularly troublesome when I went to bed at night.
During an endoscopy Rory had a biopsy. She reacted badly to the procedure, had severe pain and...
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And how did they do the biopsy?
They gave me a light anaesthetic.
But did they do it through an endoscopy?
Yes. Yes. And I actually had a sort of very violent reaction. I was, I’ve never experienced pain like it. It was absolutely horrendous and they whipped me straight up to a ward, and kept me there for three days.
Was that, the pain was where they’d done the biopsy?
With the pain. With the pain yes.
But in some ways that gave me time to come to terms with everything.
Rory got in a terrible state wondering if the nurse would find a vein so she had a portacath...
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And how many hours do you sit there with the infusion?
Usually it’s half an hour, half an hour. And I’ve got a portacath.
Can you explain to me what a portacath is?
[Laughs] well, I’m not medically trained so I might not be telling you exactly right. But once again I wasn’t told about this, I found out from another patient who said, “Oh what you want is a portacath”, because my veins are very deep seated and I was getting myself into a terrible state wondering if the nurse would be able to find my vein and oh it was dreadful. And I had some very unpleasant experiences, you know, while they were trying to find a vein. And then the vein would collapse. So having talked to somebody else who was on a different cancer treatment to me she said, “Oh, what you want is a portacath”. She said, “Don’t let them put one of these others in”, she said, “which is all exposed”. She said, “Just have one of those,” she said, “and you can even swim with it.” So that’s what I’ve had. And what they do is they insert a little valve underneath your skin and this leads directly into your vein so I can have the intravenous chemotherapy and they just if you like, plug me in really. You can’t use it for a CT scan because apparently the people in the CT department aren’t specialised to use this portacath then, I still have to have it, the vein found conventionally. But it means, it’s saved my veins …
... and it means that when I do have to have blood taken obviously weekly, excuse me, my veins are in a fairly good nick considering I’ve had so much chemo, chemotherapy, excuse me.
Is the valve covered with anything? Or is it just …
No, just my skin. No, nothing.
Nothing After I …
How do they get to it?
Well they, if you’ve, it’s like a little lump and that leads directly into the vein and they access it with a needle.
Oh I see, through that little bit of skin.
That’s right, yes.
Rory developed a deep vein thrombosis in her leg. Her consultant told her to inject herself with...
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...on the Sunday evening I’d had an, an aching leg and so when I went on Monday they discovered that I’d got a DVT in the back of my knee. I thought, I suspected as much, you know, it just didn’t feel right and it was quite painful. And then on the Sunday evening my ankle really swelled up badly. So on Monday when I saw the consultant he, he was very funny actually, he literally physically got me by the hand and marched me up [laughs] to have a, you know, to see the other consultant who would scan it. And he stood by and waited while they, and they showed it me, it was just behind the knee.
Is that a result of the chemotherapy?
I don’t know. Obviously I understand that you are more vulnerable… but nobody had told me this until yesterday, then my nurse said to me, “Oh well of course this is one of these side effects so we’re going to put you on some Clexane.” So now, and, “Here you are, there’s a bag of Clexane and you’ve got to inject yourself.” So I said, “Ooh.” Anyway, she was very good and she took me through the procedure and so that’s what I have to do.
Is that into your arm?
No, into my tummy.
Yes. So, and it’s immediately improved the leg. The swelling has gone down immediately. But they were sort of quite sort of, you know, casual about it really and said, “Well, you know, just gentle exercise and, you know, but don’t sort of lie with your leg up too much. But you know, just take it easy”. And that’s, that’s, all they’ve told me to do. So I went out and bought some sports socks …
Did they tell you to wear a special sock?
No [laughs]. But I thought, “Well, perhaps that’s what you do”. So I went out and bought them from the sports shop and I’ve put one on this leg and it’s OK. But I suppose really in a way I’ve, well some people might think I’m blinkered and I haven’t, you know, but I feel I’m dealing with it in the way that I have to deal with it.
Rory felt ill after aromatherapy with a full body massage. Her consultant told her this was not a...
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But the one thing that I did do and it was, I didn’t realise was I did actually have a massage. Nobody told me not to have a full body, body massage. I had a full body, body massage and was incredibly ill… the next day. And when I mentioned it to the consultant he said, “Oh no, you mustn’t do that.”
Why? Why does that happen? Do you know?
No, I don’t. I’ve never heard of it.
“Because you, you are on chemotherapy,” he said, “you shouldn’t have a full body massage.”
Presumably it makes things whizz round you quicker, I don’t, I just don’t know. But I know I felt very, very ill the next day. I felt like a wet rag. I, I could hardly get out of bed. My limbs ached and I felt really quite poorly.
Yes. So I had sort of quite a bad reaction.
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Rory got a Blue Badge for parking. Her insurers told her that she could remain insured if she...
Well I did, I rang my car insurance people up and said, “I'm on all these drugs” and they said, “As long as you tell us what you’re on, we’re quite happy to insure you. You’ve never had an accident”.
And they haven’t put my premium up. I have applied for a blue badge and I did get one. I feel a terrible fraud with it.
But I do get very breathless. And ..
Did, how did you apply for your blue badge? Did you have to fill in lots of forms?
I, no, well, yes I did have to fill in a form [coughs] excuse me but I had a Macmillan nurse come to see me ..
And she said, “I, I’ll come to see you while you’re really well” and I haven’t seen her since. She said, “I won’t bother you unless you want me.”
I’ve got her number if I need her. But she did actually fill the form in for me and she sent it off for me.
So the Macmillan nurse helped you get the blue badge for the car?
Yes, she did. Yes. Yes.
Do you have to pay for parking at the hospital?
Oh yes, you still have to pay, well if you manage to get a, disabled badge holder place you don’t have to pay but on a Monday they have a huge travelling unit which comes to the hospital which takes up all the, the disabled parking spaces. So you have to go into the pay park.
You have to pay. Even if you’ve got a badge?
And it’s very expensive. Yes. I think it is slightly reduced for us, but I don’t think I pay the full whack.