Helen - Interview 04

Age at interview: 49

Age at diagnosis: 47

Brief Outline:

Helen was diagnosed with pancreatic cancer in 2007. She had a Whipple's operation and chemotherapy. In early 2009 a CT scan revealed secondary tumours in her liver. Helen is now having more chemotherapy. She feels well and is back at work.

Background:

Helen is married and has 2 children. She is a clerical officer. Ethnic background/Nationality: White British.

More about me...

Early in 2007 Helen started to feel unwell. She felt tired, lost her appetite and felt a bit sick. After a few months she felt worse and one morning she was sick. She also felt itchy. In May 2007 she decided to go to see her GP. There was a locum on duty, who took one look at her and said that she was jaundiced.

Helen was admitted to hospital. She had a CT scan which had no clear results. She then had an ERCP (Endoscopic Retrograde Cholangio Pancreatography), so that a doctor could put in a stent to open the bile duct to allow the bile to drain more easily. The doctor also attempted a biopsy of the pancreas but the results were unclear again. Although she was sedated, Helen found this procedure quite painful and she developed pancreatitis following it. She was very ill for a while and had to have intravenous antibiotics.

Helen went home after three weeks. Quite soon after that she saw a cancer specialist, who told her that she was not sure if Helen had cancer or not but she would need a Whipple’s operation. The operation was delayed a bit because of the pancreatitis.

Helen’s operation took place in August 2007. She was in the theatre for 10 hours. After the operation Helen said that she felt like she had ‘been hit by a train’. She woke up to find she had drips, drains and a catheter. It wasn’t very painful, more uncomfortable, but she found it hard to move and she felt very tired and faint at times. She had a morphine pump but didn’t need to use it very often.

She was soon drinking sips of water, and could eat light food after about a week. The medical and nursing care was excellent. Helen left hospital after three weeks. Recovery at home was slow. She felt very sick and found it hard to eat. At one point she was being sick and feeling very ill. She contacted a doctor, who prescribed an antiemetic (anti-sickness pill), and then she started to feel better.

Helen felt almost back to normal by November and by December she was back at work. She didn’t have to take long term antibiotics and she did not develop diabetes. She only had to take an enzyme called Creon to help her digest her food.

Three weeks after the operation Helen went to see the consultant. The doctor gave her the result of the biopsies that had been taken during surgery. The doctor told her that there had been cancer in her bile duct and that it had spread into the head of the pancreas, but that it had been at stage 1, and that she was now free of cancer.

 

However, the doctor suggested that Helen should take part in a chemotherapy trial, just to make sure that if there were stray cancer cells in her system they would be killed. Helen agreed to take part in the trial and started gemcitabine. She had treatment once a week for three weeks and then she had week off treatment. This went on for six months. She felt some sickness at times and her hair thinned a bit, but she managed to go back to work.

Helen finished her chemotherapy in April 2008 and felt that life had got back to normal. She didn’t need Creon anymore and had much more energy. However, by the end of 2008 she felt tired again and did not feel quite right. In early 2009 she went back to see the consultant and was sent for a CT scan. Three weeks later the Macmillan nurse rang her to say that the doctor had seen a shadow on the scan, which might be a secondary. The shadow was on her liver. Helen was very upset to hear this news and feared the worst. The nurse made an appointment for her to see the consultant again.

When Helen saw the consultant she said that Helen might be suitable for a new treatment called RFA (radio frequency ablation). Helen went for another CT scan which showed that two other tumours had appeared on her liver, so this type of treatment was no longer suitable. Helen was very upset at this point. She went back to see her surgeon, who suggested more chemotherapy.

Helen started chemotherapy again as part of a clinical trial. She started taking gemcitabine and capecitabine in May 2009 and has been having it ever since. She has it once a week for three weeks and then a week off treatment. She says she will go on having this chemotherapy for the rest of her life, to keep the cancer under control. The chemotherapy has already killed one of the secondary tumours and Helen is hopeful that it will kill the other two as well.

The chemotherapy makes her feel tired at times and sometimes a bit nauseous. She also has a bit of joint pain at times. However, Helen is still working. She is taking Creon again to prevent wind and diarrhoea.

Helen sees the oncologist every month and she has a CT scan every three months to see how she doing. Family and friends support her very well. Helen is feeling well at the moment, but feels that things could change at any moment. She takes one day at a time.

Helen was interviewed in 2010

 

 

Doctors gave Helen excellent spoken and written information about what to expect during treatment. She also used the internet.

I did mainly get a lot of information off the Internet, mainly from the Macmillan website and Pancreatic UK. But my, my consultants and their doctors were absolutely fantastic. When I was first, when I first started to go to the main hospital to see the surgical team, there was, the registrar at the time, who we saw mostly, was absolutely wonderful. He explained everything in great detail, took loads of time to explain things to us. And if we asked questions he always answered them really well. So we, we always knew exactly what was what and what was going on and what to expect. He never left anything out. He was wonderful. So we got a lot of information off him. And he did give us a booklet, with a diagram of what was going to be taken from me when I had the operation, and he, he’d scribbled on that for us to show us exactly, which was really quite helpful, scary, but helpful.

 

And before you had the chemotherapy trials, were you give written information?

 

Yes, I was given leaflets about the chemo trial and about the side effects, possible problems  that you could have during chemotherapy. But you get that with anything nowadays. I mean you open a box of tablets nowadays and there’s always a big list of possible side effects, but you don’t actually get them in the end. Very few people I think suffer severe side effects.

 

By searching the internet Helen found a woman who had had a Whipple's operation; she told her what to expect.

And looking at the Internet, was that useful or not?

 

Oh, very useful. I don’t think I could have got through it as well as I did without the information that I got off the Internet and the people that I spoke to on the Internet as well, people who had been through it. There was one lady in particular; her sister had just had the Whipple’s while I was waiting to have mine. And her sister was absolutely wonderful, gave me in great detail how her sister had, what her sister had gone through with her operation, so that I knew what to expect, which was what I wanted. Some people don’t want that. Some people like to just bury their head in the sand and, and not know. I wanted to know everything. I wanted to know every tube that was going to go into my body, what I was going to expect after the operation. It didn’t scare me. I felt empowered I suppose, because I knew what I was going to be, what was going to be happening. Nothing was going to be a surprise or a shock.

 

How did you find those people on the Internet to ask questions?

 

I just did, I just kept searching in the search engines really under pancreatic cancer headings, usually, or Whipple’s, which was the operation. And that would bring up a wealth of sites to look at. And it was just a case of going through the sites one by one, trawling through them and seeing what they were and how they worked, and just negotiating my way through them really.

 

So you found people who were, who were happy to give you information or their email address or something like that?

 

Yes.

 

On those sites?

 

Yes.

 

Helen had a stent inserted to relieve jaundice and had a biopsy at the same time. Afterwards she developed pancreatitis and was very ill.

Because of, I had a blockage, apparently, in my bile duct and they couldn’t see, it was all very clouded, so they couldn’t tell me for certain whether something was there. They did a test, not a test, a procedure called ERCP, where they put a tube down, and they can see everything, they can explore it to see what’s there. Because of the blockage they couldn’t get all the way. But they did put a little stent in to help clear the [bile duct], so that there was a clear path for the bile to go through, which cleared my jaundice then, which was a difficult, I found it a difficult procedure, because you, although they sedate you while you’re, while you’re having it done, you are aware of it, especially towards the end of what they’re doing. And it was quite painful afterwards. So I was in pain for quite a while after the procedure. But the jaundice did clear thankfully, because they’d got the stent in place.

 

So you had this procedure. You were still in hospital.

 

I had that procedure. And unfortunately after the procedure I got pancreatitis, which was very bad, and I was very, very poorly. They were giving me antibiotics intravenously. I think they stopped me, I couldn’t, I wasn’t allowed to drink or eat, and they also catheterised me at one point, because they needed to monitor my input and output, which was very important. They were constantly doing observations, temperature, pulse, blood pressure etc. Things were quite tricky. And it wasn’t till I was really on the mend that the surgeon actually said to me, came to see me, my consultant, and he said, “We were very, very worried about you.” And he said, “Do you know what I mean?”

 

Did you get an infection in the pancreas as a result of the procedure?

 

I did. Yes, it was, it was very nasty. It took quite a while to get rid of it. But once that was on the mend, I was fine and I was back up on my feet and, and I could go home then. But it was a case of waiting then to see a specialist in the field of pancreatic cancer.

 

Did they do a biopsy at the same time they put the stent in?

 

They did, yes. But it was inconclusive again. They couldn’t really get to it properly to, to get a good biopsy. So that was, it was all very, although I was told, on more than one occasion in hospital, that they suspected it was going to be a tumour, they couldn’t, they couldn’t say, “Yes, it was definitely.” They could only say, “It’s more than likely going to be.”

 

Helen described her time in the intensive care unit after a Whipple's operation. She had a morphine pump to control the pain.

As I say, it was a long operation. Ten hours. Once they’ve done the operation, I was taken to High Dependency for 24 hours, well, Intensive Care really. And when, you, you have a lot of tubes and drips and drains attached to you. I had tubes in my neck which they could draw blood off for tests, regularly. I had drips in both hands. I had a catheter in, two drains in my abdomen to get rid of all the excess fluid following the operation, and a big, big dressing on my abdomen. 

 

I mean it, you, it feels like you’ve been hit by a train basically. I found it very, very difficult to move. I couldn’t even pull myself up in bed. You feel very, very drained basically. You, you know, it’s very difficult to, to be alert and know what’s going on around you, you just kind of sleep through it for the first 48 hours. It wasn’t, I didn’t find it particularly painful. They did have me on a morphine pump, which I could press whenever I needed it. But I didn’t use it very often. And I did actually get told off once or twice, because I was told, you know, “You must use it, you must use it. You need it.” And I said, “But I, I haven’t got pain.” So I wasn’t worried about that. It was more the moving that, I didn’t like it. They got me out of bed the next day and that was very, very hard. Standing up was, was very difficult and I couldn’t stay upright for long.

 

Did you have an epidural as well to control pain?

 

I didn’t actually. I should have had, but a tablet had been given to me too late the night before. So the anaesthetist decided just to put me on the morphine pump instead. He had me agree to it first, you know, made sure I was okay with it, which I was. Which actually I was quite relieved about because I didn’t like the idea of an epidural in my back. So when he said a morphine pump I was like, “Yes, that’s fine. I’m okay with that.” 

 

Sometime after surgery Helen started having diarrhoea and wind. The doctor told her to take Creon with every meal. That helped a lot.

You mentioned earlier that you were taking a drug called Creon to help you with your digestion. When did you have to start taking that?

 

I really only started taking it properly about six months ago. I hadn’t needed it post op, which I think was quite unusual, as most people do take Creon almost immediately. But I found that I wasn’t really having digestive problems. I was having a few problems with my, with wind basically and, and I started getting bouts of diarrhoea, which when I asked the registrar about at one, at one of my appointments, he said it was because I wasn’t taking enough Creon. And at that time I was only really taking it when I felt that I needed it. So he recommended that I start taking it with everything that I eat, and take more of it as well. You can take as many as you need basically of Creon. And they’re capsules, and they just help the food, they help your system to digest food so that it’s disposed of normally, basically. And it, and it does help a great deal. But I, I am finding now that I’m having to take more and more. If I don’t take them then I’d go back to having diarrhoea again.

 

Do they come in so many milligram tablets?

 

They do come in different doses. My dose, they’re 40,000 units, but they do 10,000 units as well I believe. I think it’s used in different conditions as well. So I suppose, pancreatic seems to be the 40,000 dose.

 

So you take that, one of those every time you have a meal?

 

More than one actually. I can take as many as I need, as many as I think I need. It depends on what you’re eating. If you’re eating a particularly fatty meal or spicy, or, you know, with onions in or something, then I do tend to take about three or four with that meal.

 

After surgery Helen took part in a randomised controlled trial called the ESPAC trial. The computer put her in the 'gemcitabine only' arm of the trial.

What was the trial called?

 

It was ESPAC.

 

How do you spell that?

 

E S P A C.

 

Do you want to summarise what the trial is all about?

 

Basically they don’t know which chemotherapy works better on my cancer, my type of cancer, or pancreatic cancer in general actually. So they, they are, they do have chemotherapy trials at the moment where they’re trying to, they have people, different people on the trial, those who already have pancreatic cancer or those like me who have had the Whipple’s operation and are cancer free and therefore want to prevent cancer recurring. They, they split it into, was it two categories or three? And you, you, it’s randomised basically. They, they put all your details into the computer and the computer selects which part of the trial you will be put on. And I was told that I would either be selected for no chemo at all or this one particular chemo, which, there were two different chemo modes that you could be selected for. 

 

At the time I kind of, because of everything I’d been through I wasn’t really in a rush to go and put myself forward for this. But I knew that I had to give myself every chance to survive. So I agreed to go on the trial. And part of me, a big part of me actually, hoped I was going to get the no chemo arm [laugh]. Which was really daft, but I think it was, I’d had enough. I just couldn’t bear the thought of more needles, more treatment. So it was, it was really, really hard to, to do that. I was only just recovering from the operation and I, I just felt that I wasn’t ready really to, to go and do this. But everyone reassured me, you know, that it would be fine. And so I was put forward for it. They randomised it, and I was selected for the chemo. And apparently the chemo trial co-ordinator and the Macmillan nurse were taking bets before I went to the hospital how I would react [laugh]. And one of them correctly, guessed correctly that I would be a bit, you know, “Oh, no.” Which I was. But at the same time I was happy really because I knew that this was a good thing to do. I had, I wanted to be sure that, you know, I’d done everything possible. I didn’t want to live to regret not having had the chemotherapy. So I went into it willingly in the end.

 

What were the names of the, what were the names of the drugs?

 

I was on gemcitabine chemo.

 

Just gemcitabine?

 

Just gemcitabine, yes. There was, the three arms were no chemo, gemcitabine was the second arm, and the third arm was gemcitabine and capecitabine. So I got the one. Which I was quite relieved about really because it was a bit less intense than the gemcitabine and capecitabine would have been.

 

And when did you start that?

 

Almost immediately really. Within, within a couple of weeks they’d started it. And it was six months’ treatment.

 

After Helen's cancer spread to her liver she started on the TeloVac trial. She was randomised to the arm of the trial having chemotherapy only.

So I went to see her again and she recommended another trial. Chemo again. Because again they don’t know what works on pancreatic cancer well. So this was a different trial that they were going to put me on this time. And there were again three arms to this trial.

 

What’s it called?

 

It’s called TeloVac. That’s T E L O vac. Which is the same chemotherapy as on the ESPAC trial, but the TeloVac includes a vaccine, if you’re selected for the vaccine, which they are trialling at the moment. They don’t know how well that works with the chemo. And I was put forward for that again. And I was selected to have the chemo only, not the vaccine. Which wasn’t a bad thing really, because at this stage they don’t know if the vaccine works or even if it interacts with the chemo or if it actually blocks the chemo. So in a way I was quite happy that I wasn’t getting the vaccine. Whereas the two chemos together, the results have been quite promising so far.

 

What are the names of those drugs?

 

It’s gemcitabine and capecitabine again.

 

So when did you start that?

 

I started that in May I think this year. I’ve been on it nine months, last year, sorry. I’ve been on it for nine months now.

 

And is that once a week or once a month?

 

It’s the same as last time. Once a week for three weeks, and then I have a week’s break. And that basically, I’m on that for the rest of my life basically. It, it’s quite, it’s more of a, I’ve forgotten the word now.

 

Preventive?

 

No, palliative. It, it’s helping to keep the tumours at bay and keep me alive basically. If I didn’t have the chemo, I’d have no chance whatsoever. It would just be a case of time. Whereas at the moment it, it’s doing really, really well. We’re very pleased. I’m actually down to two secondaries because it’s actually got rid of one of them. Whether for good, we don’t know. But there’s every chance that it has actually killed one of them off. So we’re keeping our fingers crossed it’s going to kill the other two as well.

 

 

Helen had felt back to 'normal', but almost a year after her treatment finished she felt exhausted and suspected a recurrence.

In 2008, I finished the chemo round about April. I was back to normal more or less really. I was working, as I said, coping with chemo. That was fine, doing everything that I would normally do. We had a couple of holidays. And life was really getting back to normal. We were doing lots of work on the house. So I felt like I had my life back. Cancer had been, had been, gone, dealt with, and that was fine. So 2008, we had a really good year, especially when the chemo finished. Once the chemo finished my, my energy levels rose and I felt normal basically. My scar was fine. I was having no problems with that. No problems with my digestive system at that point. I wasn’t taking Creon. I didn’t need it. 

 

We got to the end of the year and we were coming up to Christmas, and I was starting to feel a little bit tired, but not majorly tired. And again I was putting it down to work, being back at work and Christmas coming up, and didn’t really worry about it. But then over Christmas I found it very, very hard and I was more and more tired again, feeling exhausted again and I was getting really worried. And, oh, I knew I was due to see my consultant again in February, so I just thought, you know, “I’ll wait and speak to him in February.” But by the first week in January, I couldn’t ignore it any longer. I was getting really worried. And I emailed the chemo trial co-ordinator, who was absolutely wonderful, along with the Macmillan nurse, gave us loads of support, was there at the end of the phone if ever we wanted to speak to her. And I just emailed her and I, and I said, “Look, I’m not feeling right. I can’t put my finger on it, but I just know something’s not right. I’m tired again. And there’s a niggle there that won’t go away. Do you think I should bring my appointment forward?”

 

What wouldn’t go away?

 

The tiredness, just generally not feeling right again. So she emailed me back and she said, “Yes.” She said, “It’s probably nothing but I’ll have your appointment brought forward and bring you in.” So she did that, and I went in about four weeks sooner than I should have done. And I explained to the doctor I saw on the day, how I was feeling. And again because there was nothing specific and I couldn’t, you know, say for sure that something wasn’t right. I just knew I wasn’t feeling well. And he said, “Well, I don’t think it’s going to be anything.” He said, “They are a bit vague.” He said, “But just in case, we’ll send you for a scan.”

 

Helen could have claimed Disability Living Allowance but she was not allowed to claim retrospectively.

You mentioned finance. Did, did all this have a big financial impact on the family?

 

It did to some extent, because your life is different. You, you’re constantly having to travel backwards and forwards between hospitals, so you’ve got your excess of petrol. Your heating costs can go up because when you’re poorly you’re cold and you want to be warm. And for quite a while after the operation I was always cold and I’d want the fire on as well as the central heating, which drove everybody mad. But I had, I just had to be warm. So, so the heating costs have probably gone up a heck of a lot. 

 

Work-wise, because of course I was off sick after my operation, I was off work for about nine months at that time, prior to my operation and then of course post op. So then of course my wage isn’t coming in and I only get sick pay, which doesn’t cover everything. You know, you still have bills to pay, even though you’ve got cancer, your life still goes on to some extent. So it was hard, very hard. My husband had to take control of my side of things really, to try and keep us on track. But it is very difficult.

 

Is there any way you could get financial help from anybody?

 

At that time we, we did look into benefits and things. But because my husband earned a certain amount of money, we weren’t entitled to claim things at that time. Although I have since found out that I probably could have claimed Disability Living Allowance. But I was under the impression, somebody had said to me that it was means tested, the Disability Living Allowance. But actually it’s not. Anybody can claim it, for the right reasons obviously. And I probably could have claimed it at that time. But I was under the impression that I couldn’t. So I didn’t, and so I’ve lost it

 

You can’t get it retrospectively?

 

No.

 

After Helen's operation the physiotherapists helped her to get up and walk, and gave her exercises to help strengthen her pelvic muscles.

And then the physio come to see you and they start walking you and giving you exercises to do, which you can do while you’re in bed, to start strengthening up your pelvic muscles again. And your abdomen, it’s still very, very numb, and it is difficult. But it did help. And, and they were great. They were very understanding. But it took two physios to walk me, one either side, and I was very unsteady on my feet. And there was one occasion when I thought, I really thought I was going to fall and then they had to keep tight hold of me. But it did get easier, and day by day you could feel the difference.

Helen had several CT scans. It felt strange when the radiographer injected dye into her arm.

I don’t know what else to say about a CT scan really. It’s, from a patient’s perspective it’s just, it’s just the dye that they inject you with, which helps all your insides to stand out clearly on the scan. That’s not a problem. You don’t really feel it, apart from it can give you a sensation of warmth flooding your body. And it can also make you feel as though you’re passing urine. It’s, it’s a very strange feeling. But it’s fine. It doesn’t hurt. It doesn’t affect you. You don’t feel it afterwards. It’s literally a few seconds of warmth and then it’s gone. And it’s just like a big doughnut, the CT scanner, that you pass through on a table. It’s, you know, it’s not frightening. Well, I don’t think it’s frightening. Very simple.

The health professionals were excellent. They told Helen everything she needed and generally they were 'singing from the same hymn sheet'.

And what about interaction with the medical staff?

 

Medical staff again were lovely too. We, we cannot fault any of the medical staff throughout the whole experience, from the consultant down to the auxiliaries on the ward. Everybody was absolutely wonderful. They never made me feel unimportant or that anything was, you know, if I was being a nuisance or… They listened to me. They gave me direct answers. They never hid anything from me. And they were always there basically. I never felt that they weren’t. And I never felt left out of it or that I wasn’t being told something. Which was good because I, I’d always said that I wanted to, you know, I just wanted them to tell me straight, anything, you know. I didn’t want anything hidden…

 

And did they usually give you the same information? Or was there any sort of discrepancy between information from one or the other?

 

No, no, they were all generally singing from the same hymn sheet. I never, I never, I never felt uncomfortable with them. I always felt that they knew what they were telling me and what they were doing.

 

Helen's Macmillan nurse asked her to call him. She phoned and was shocked to hear that her CT scan showed that she might have a secondary tumour in her liver.

So I went for my CT scan again. And a couple of weeks later, oh, I hadn’t, well, I hadn’t, I didn’t hear anything for about three weeks actually, and I was starting to relax then because I thought, “Oh, well, it can’t have been anything. Not heard anything. It must be fine. They would have let me know by now.”

 

And I’d been out for the day with my sister and she’d said the same to me, you know, “Have you heard anything?” And I said, “No.” I said, “So I assume everything’s okay.” I’d had an appointment made to see the consultant, but it was cancelled for some reason and another one was made for the following week. But then when I got home that day there was a, a message on my answer phone from the Macmillan nurse, asking me to ring him, which I did. I was, I was a little bit, you know, I thought, “Oh, that’s a bit strange.” So I rang him up and, you know, I said, “It’s Helen, is everything okay?” And he said, he said, he asked me how I was at the time, you know, and just general conversation. And I knew, deep down I knew there was a reason why he was ringing and I was thinking, “Just get to the point, get to the point. Please, just get to the point.” And he finally said, “Look Helen.” He said, “I wouldn’t normally do this.” He said, “But I feel that we’re friends and we know each other well now.” Because I’d, I’d had a lot to do with the hospital. I’d been involved in a press launch and things. He said, “And I wouldn’t normally do this over the phone but I know that you can take it. You, you know, you’re, you’re quite sensible”, he said, “But something’s shown up on your scan.” And I said, “Oh.” I said, “And I thought there was a reason you were ringing.” I said, “Go on. What?” So he just said, “There’s a shadow.” He said, “We don’t know at this stage what it is.” He said, “But it’s quite possibly a secondary.” I said, “Right, okay.” I said, “So what now then?” He said, “Well, we’ve made you an appointment. Come in and see the consultant, and they’ll discuss it more with you.” So I said, “Okay.” So anyway we went off the phone and I thought, “Oh.” So I had a bit of a cry.

 

Whereabouts was the shadow?

 

On my, on my liver. I rang my sister straight away and told her. So she was upset obviously. And my husband, I didn’t tell straight away, because he was in work and I didn’t want him getting upset in work and then driving home, because it was quite a long drive. So I waited till he got home before I told him. So he was a little bit taken aback. But he was kind of philosophical about it and, “Well, we’ve done it once. We’ll beat it again” you know, kind of thing. So he was like, “We, we, we’ll deal with it. Don’t worry about it.” And I kind of, I kind of agreed with him, but at the same time I felt that that was it. It was back and this time it was going to try and get me. So that was, I, I did find it, that was more shocking to me than the first time. It, it, it was more frightening, far more frightening than the first time. So it was very difficult.