Michael - Interview 05

Age at interview: 65

Age at diagnosis: 63

Brief Outline:

Michael was diagnosed with pancreatic cancer nearly three years before we spoke to him. His early symptoms were indigestion and pain. He had a Whipple's operation followed by chemotherapy and radiotherapy. In March 2010 he had a recurrence and had Cyberknife treatment.

Background:

Michael is a retired wine merchant. He is married with one adult child. Ethnic background: White, half Polish half British.

More about me...

During the months leading up to his diagnosis Michael started to get severe indigestion after drinking a lot of wine. One day he had a bad pain in his side and went to his GP, thinking it might be a kidney stone. He had a blood test which showed he had a high liver count.

Michael had private health insurance through his job. He had to book a routine prostate check-up at a private hospital so also arranged for an endoscopy, CT scan and appointment with a specialist. He was told he had pancreatic cancer but that the tumour was small and could be treated easily.

Michael had a Whipple’s operation at a private cancer clinic. The operation took 8 hours. He went home after 11 days and spent a month recovering. He then had 6 weeks of chemotherapy, 5 weeks of radiotherapy, then another 6 weeks of chemotherapy. The drugs used were gemcitabine (delivered intravenously in hospital via a Portacath for 2 weeks in every 3), and capecitabine taken as tablets at home. All this treatment finished in June 2008.

Michael and his wife had a session with a psychiatrist to learn to deal with his mood swings during the treatment. He had always been a fan of complementary therapies so used regular reiki and meditation to support himself emotionally. A reiki session helped him feel confident about his operation.

Michael went on a family holiday after completing the chemotherapy treatment. During the holiday he began to feel the emotional effects of what he had been through. He said this meant that he was bad company and the holiday didn’t go as well as he had hoped. A scan at that time showed he was all clear. He had a check-up every 3 months and a scan every 6 months for the next 18 months.

For a while, Michael’s life went almost back to normal. He took antacids and enzyme replacement tablets daily and could eat whatever he liked without gaining weight. He semi-retired at age 65 while he was ill. He spent his spare time raising awareness of pancreatic cancer and supporting others who have it. He joined a hospital patient panel to try to improve the experience for others. Although he had lost some of his confidence, he was happier and more at peace with himself.

In March 2010 Michael had a skiing holiday. When he came back, he had a CT scan and the oncologist told him the upsetting news that the cancer had come back. The tumour was in the pancreas and, fortunately, it hadn’t spread. Michael’s oncologist said he could have Cyberknife treatment which is a highly targeted, very accurate type of radiotherapy. Michael was referred to a centre in the UK where this could be done.

Michael was assessed by the multi-disciplinary team at the Cyberknife centre. The team decided that Michael would benefit from Cyberknife treatment. Michael had a fiducial inserted by injection into the centre of his tumour. Fiducials are small gold markers that are put into soft tissues in or near the tumour to accurately guide the Cyberknife radiation beams. This was done with local anaesthetic and was ‘relatively painless’.

 About a week later Michael returned to the clinic so that technicians could make him an immobilisation device. This device looks a bit like a sofa. It is especially made for each person so that the patient can lie comfortably in the same position for each treatment. Michael had to lie still for about an hour for each of his three treatments.

A few days later Michael returned to the Cyberknife centre for his Cyberknife treatment. He had three sessions on three different days. He had to lie perfectly still while the robot assisted rays were directed at his tumour. It was painless and non-invasive.

After Michael’s treatment he felt sick, very tired and got indigestion. The nausea lasted about three weeks. The fatigue went on for longer and Michael is still feeling tired now, nearly seven weeks after the treatment ended. He is trying to put on some weight but is finding that difficult. Michael has had some more counselling to help him cope with the psychological side of his experience. He also had some reflexology, which he has found very helpful.

When we met Michael he was about to have another CT scan. He hoped that the Cyberknife treatment has been successful and that the scan would show that there were no more tumours.

We spoke to Michael in 2010  

The doctor did an endoscopy to establish where the tumour was and to estimate its size. The procedure gave Michael a sore throat.

I was pretty nervous about having something stuck down one’s throat and they give you an anaesthetic. It’s not a general one. It makes you sort of drowsy. 

 

A sedative probably.

 

Yes, yes. But I found that I woke up, sort of whilst it was still in and it was quite an unpleasant feeling this thing down and trying to sort of get one’s breath. And again, when he’d taken it out one had a bit of a sore throat. So my personal experience of that wasn’t that pleasant, frankly. 

 

So do you know what the purpose of that test was? Was it just to have a look around? 

 

Yes. Yes, no, the purpose of that test was to try and identify exactly where and how big the tumour was. And it was actually as a result of that test that my surgeon finally discovered a) the size, that it was bigger than he’d thought, and b) it’s location.

 

They didn’t take any biopsies at that time or anything?

 

No.

 

Michael felt that the gemcitabine and capecitabine were poisoning him but he also recognised that the drugs were getting rid of the cancer.

I just felt I was poisoning myself, and in fact, I much preferred going into the clinic, I went to a private clinic, and having the gemcitabine drip, and all that, all the sort of treatment, well, it was basically the gemcitabine drip. What I had was I would go two weeks - it was a three week cycle with one week off - and I’d go in every week to have the gemcitabine drip and then I’d come home and I’d have the capecitabine tablets and a load of these other tablets to counter any side effects. But I was taking a sort of massive amount of tablets and it really, I did I did feel that I was poisoning myself but one had to try and put it in a more positive frame of mind that in fact one might be but at least it was doing one’s body some good and getting rid of the cancer. 

Michael had gemcitabine and capecitabine. Apart from a little nausea he had no serious side effects, but sometimes felt tired, emotional and irritable.

I think the only side effects, I couldn’t think, I didn’t feel sick very much. Very occasionally I felt a little sick but the domperidone sorted that out in a second. My main thing I think there was tiredness, I think one became a bit emotional and irritability so it was sort of mood swings I think.

 

You didn’t lose your hair or anything?

 

No, I said my hair, my hair thinned and I think, my feet didn’t crack. They got a bit ticklish at one stage but this Aveeno cream was absolutely brilliant. And so really with the chemo I was I was very fortunate and I, you know, I must say a lot more fortunate than a lot of other people. 

 

Michael explained why the doctors decided that CyberKnife treatment was suitable for him. His medical insurance paid for it.

Yes, and therefore it [the tumour] was isolated. And as such my oncologist felt that I would be eligible for this literally state of the art, brand new treatment called Cyberknife. He therefore wrote a letter to my radio, radiotherapy consultant and both of them put up the case to the Cyberknife team, which is a multidisciplinary team, and unless your sort of diagnosis fits their model it is very difficult, you are not able to have Cyberknife and one of the criteria is if its, if it’s a very large tumour you can’t have it, or indeed if it’s spread, if it’s metastasized, again you can’t have it so in that way I was extremely lucky that mine was isolated and therefore they felt that it was ideal for Cyberknife.

 

Anyway their proposal went forward to the Cyberknife multidisciplinary committee and to my great good fortune they agreed that it, that I was a suitable patient to have the treatment. But the only downside was that the treatment is actually extremely expensive and in fact costs I would say about 25,000 [pounds] for three, between three and five sort of shots. And this, that would include the placement of a fiducial which I will talk about in a minute. And therefore clearly for, this might be out of, beyond the reach of some people, and indeed many people. I was very lucky in that my life insurance company, sorry my health insurance company having initially said that the treatment was too new and there was no compelling evidence to say that it worked, and therefore they doubted that they could help me, reviewed the case and in fact did agree to help me so my treatment was covered which was incredibly fortunate actually.

 

A scan showed that Michael had a recurrence. However he did not have metastases in other parts of his body so CyberKnife treatment was possible.

I think the last time that you were interviewed you explained that you’d had the cancer two and half years ago, and you’d had surgery, chemotherapy, and radiotherapy.

 

Yes.

 

And were in remission and having check ups.

 

Yes.

 

So what’s happened since then?

 

Well basically my surgery, chemotherapy and radiotherapy finished in June 2008 and I’ve had, I’ve been in remission since that date having check ups every three months, in terms of blood tests, and then every six months in terms of a CT scan. And everything was fine and I was feeling pretty good, and we went actually skiing in March, and my sort of next six month CT scan was just when we got back. And so having arrived back I had my CT scan and then my oncologist informed me that we had a little problem after this one, and this was in the form of I think a two centimetre tumour, which had appeared. Mercifully it was isolated, and as such he recommended me for this new treatment called Cyberknife.

 

Do you go back to your original doctors or will you be having follow ups and CT’s with the Cyberknife [group of doctors]?

 

No I go back to my original doctor, and I, I’ve had one check up with the chap who pioneered the Cyberknife in the U.K, immediately following the treatment. But on August 4th I will go back to the radiotherapies consultant who actually works with this chap, but under whose sort of,

 

You were seeing originally?

 

Yes, who was my original consultant. Yes. So really I’ve seen two consultants in this, one the oncologist and secondly the radiotherapy consultant.

 

The one at the Cyberknife centre?

 

Well he’s,

 

You’ve seen two for follow up, you see two regularly.

 

Yes yes. There are two radiologists here, one is the chap who’s actually sort of pioneered Cyberknife in the U.K. who I was very fortunate to be put in touch with, and my radiotherapy consultant is working closely with him because it’s so new through my oncology centre.

 

Michael had his chemotherapy in a private clinic. The doctors and nurses were 'brilliant'. He could have complementary therapies while he was there.

And I think the other thing that when I started the chemotherapy, the clinic I was in was absolutely fantastic in the, I can only call it sort of love and affection and professionalism they gave one. And when you went down there you were the sort of celebrity there. Everything was done to make your visit there as comfortable as possible and they were very sensitive and they were always enquiring, asking how you are and what they could do to try and help you. And you had alternative treatments there. You could have reflexology, reiki or aromatherapy, and the other thing for women, which I thought was, and even men if you wanted it, there was a woman there who gave talks on image. So, you know, how to dress if you had, for women, if they had hair loss, they told them the sort of hairstyle, sort of make up to use, and I think this was a number of, well, lots of women had a session there and that really helped them I think enormously so that so they could still feel attractive during this treatment. It wasn’t so relevant to men because I don’t think we think too much like that, but it… Then there was someone who, a specialist in nutrition, a specialist in homeopathy and then a psychiatrist who could give you advice if you had emotional ups and downs. So there was not only the medical team but there was this tremendously helpful support team around you, and again, the doctors who looked after me were all internationally known and again were absolutely brilliant in the way they, the positive attitude they took with one and encouraged one and helped one get through the troubles. 

Michael described what happened when his tumour was marked with tiny particles of gold (fiducials). The procedure was relatively painless.

Right so after that, as I say, I was identified as a suitable patient. And the next step was to have something called a fiducial, which is where they implant gold seeds into the centre of the tumour, which acts as a marker for the Cyberknife rays. And what happens here, you go to hospital and they give you a local anaesthetic in the affected area, and then inject, in my case through my tummy into the particular, into the area, of the pancreatic area where the tumour was, a long needle which he showed me, it was about 12” long, it was a bit frightening [laughs].

 

Then they inject these gold seed into the centre of the tumour and they do it by using a CT scanner and they can be incredibly accurate. I must say that the, the chappie who did it for me was I think absolutely brilliant, it was, when I think what he had to do and you know, making certain the needle didn’t pierce any of the arteries and all of the veins and this sort of thing, I think he was completely brilliant actually, and a lovely manner as well which is very important because it is quite frightening when you see this massive great needle being thrust into you. But he was very good, he had the CT scan and he guides it into the centre of the tumour via the CT scan. 

 

How did you feel?

 

In my particular case and as, what he, as the needle goes in there’s another needle beside it, which in fact injects anaesthetic as you go down and so the area is numb. For me it was, I must say relatively painless. There were two or three, only one what I would call major twinge, but generally speaking I was amazed at how painless it was. I know some people have suffered and felt more and it has been a lot more painful, but certainly as I say in my case I was very lucky.

 

During the CyberKnife treatment Michael had to lie very still for an hour. He liked the atmosphere in the clinic.

So my area, my treatment was mapped out and I duly turned up at the Cyberknife centre, and I must say here that the team were absolutely amazing throughout, really sensitive, very warm, and highly professional. And it consisted basically of two operatives, and then a doctor who was there who would see you every time to see how you reacted to the treatment, what you felt and whether you need, what extra medication you needed. 

 

And then the actual consultants themselves were not present because the guy doing it said, “They’re not actually allowed to operate the machines. These have to be done by the operatives themselves.” 

 

So the other thing, beforehand when you have the CT scan, I’ve got, they make this mould for your body because you have to lie down and between 30 minutes and one hour and twenty minutes, absolutely still. So they, they make this mould so you’re, not quite like in a, in a coffin, that’s a rather bad analogy, but you have to remain absolutely still. And then you have a rest for your ankles and then also for your, a head rest.

 

So how long do you have to lie in it did you say?

 

R' Between thirty, thirty minutes and one hour twenty. I actually had to lie in it for an hour…

 

So as I say I arrived at the centre and you slip into this gown, and then they start, they start the treatment. And in my particular case you don’t, you don’t actually feel anything during the time, you can’t see anything, and all you can, all you can see is this robotic arm moving around you at 180 degrees and going into 151 different positions. And in my particular case, they, the machine automatically changed its, its sort of head to a one to give a finer beam or a thicker beam as it needed…

 

And they had music, it, it’s a very, extremely modern set up so you don’t get this sort of old hospital atmosphere. So it’s a good atmosphere to have it in. And one thing before you start you see the nurse and they explain everything that’s going to happen, and explain that they’ll give you these nausea drugs and anything else that you particularly need.

 

After CyberKnife Michael had indigestion, nausea and felt exhausted. He found it hard to sleep and felt quite emotional at times. His skin was fine.

Were you actually being sick, or just felt sick?

 

No I was, I was never actually sick, but it was that sort of bilious feeling in one’s stomach which is really debilitating and the worst side of it was because of this and the indigestion, I couldn’t sleep. And of course you know you then got tireder and tireder, and more debilitated and everything appeared to be rather black at that stage. So once I started managing to get some sleep things, the situation much improved.

 

So you actually felt very uncomfortable?

 

Yes, yes well I didn’t feel, it wasn’t, I didn’t feel much pain as a result of this, it was this indigestion which was, I think actually a build up of wind, and I’m sure it was, a build up of wind in, in below one’s sort of rib cage, and round to the, to various parts in one’s tummy. And that combined with the nausea was very, very uncomfortable actually.

 

Could you eat anything?

 

I did eat, but my appetite obviously wasn’t brilliant so I lost more weight, but now I suppose, my treatment ended on 26th May so it’s what, July, nearly 7 weeks now, I suppose after the treatment and I am feeling much better now. And I’m trying to put on more weight. I do find I get tired.

 

I’m actually talking to; I did go and ask, there was a very good symptoms manager, and also a sort of psychiatrist who’s attached to this particular unit. And I did have some word with them, counselling, because I wanted to try and tackle this from two areas, a) the physical side but b) the sort of psychological side. And he said I think it was very appropriate word, he said, “Well the word convalesce has actually dropped out of the English dictionary now, and people they finish their treatment and immediately feel they can sort of get on with their daily lives,” And he said, “After your treatment where effectively you’ve had six weeks radiotherapy in three days, you know, your body really has taken a hammering, and if you think what sort of hammering it’s taken over the last three years it has been pretty substantial. And so you really must take care of your fatigue and pace yourself accordingly.” And he said, “The difference between fatigue and tiredness is that tiredness you wake up refreshed when you fall asleep, and fatigue you wake up feeling exhausted.”

 

And you’re still feeling a bit like that?

 

I still feel a bit like that. The trouble is if you have a fairly sort of full on life here and it is, it needs a conscious effort to sort of slow down and, but I, I really think it is important because if this fatigue starts getting the better of you, you then get depressed and you know, emotional and life looks a bit, looks rather black.

 

And they did say actually one of the, one of the side effects of this Cyberknife is that you, you can get very emotional, so that is, I think people need to be aware of that. I’m not, and certainly their partners or people looking after them need not to be worried that they, it is just the side effects of it which will disappear as time goes on.

 

Did they mention any other side effects?

 

The other side effects so they said were, were basically, nausea, nausea, fatigue and I think those were basically, basically it. Obviously different people behave in different ways and in my particular case I had the added one of indigestion.

 

Does it affect the skin at all?

 

Ah, yes, and they said that if you had been irradiated before it could affect the skin, in my particular case it, it didn’t.

Michael was glad that he could talk honestly about his feelings with his wife. The support from family and friends showed him that they valued him.

And I think the other thing I had was the love and support I had from my family, from my friends, from colleagues in the trade and from my company, which really were, you know, beyond the call of duty and was quite outstanding. And I think that made one realise that one was actually a valued person or one had some value. I think it’s all so easy in our life, we think that nobody likes us or we’re a bit of a wimp or bit of that, and it was really immensely gratifying to know that people did care. My wife was absolutely outstanding. Nothing was too much trouble, and as was my daughter and the rest of her family. And it really was a very moving experience to see the love and the care and the support they gave me. 

 

So yes, it’s been I think in the last twelve months a big sort of learning curve on the emotional side, and I think it’s been difficult for my wife as well, and what we’ve had to do, I’m delighted to say we’re very devoted to each other and that was really important that we knew we both loved each other very much and that it was just a sort of superficial thing that was happening. But we had a, we used to go in and have board meetings where we’d discuss various things and one of them was our emotional state and how we were feeling towards each other. And I think it’s very important that you have to have honest talks with your partner or wife, or husband, and really say how you feel and try and explain how you feel so that they can understand. Because it is tragic how many, and I now understand how many relationships do break up as a result of this one party or another can’t cope. But if there’s a will and there’s devotion on each side then it is possible to come through it and I think be strengthened for it in fact. 

 

Michael felt shocked by the recurrence. He had hoped to survive at least three years before any recurrence.

It must have been very difficult for you when you discovered it had come back. 

 

Yes, I think you’re right. I haven’t really sort of touched on that. That was quite a shock in a way, both for me and for my wife, and one mustn’t forget the you know traumatic experiences for one’s near family, and how they cope with it as well because it’s I think, in this, that sort of diagnosis is as traumatic for them as it is, as it is for you.

 

Yes it’s a difficult time I think, and certainly it knocks one’s, one’s sort of confidence because one I, I’d hoped after 21 months that one had got through it, and that was, one was going for the sort of 5 year mark, or certainly for the 3 year mark. And then to find that it had come back was a bit upsetting and de-stabilising I think mainly. But I have great hope that this Cyberknife treatment will work and I think the key thing here is one, one mustn’t think of the future, you just have to enjoy the moment. And as I think this is the same thing with all cancers that you’re, you’re in remission. You’re never necessarily actually cured. You can be in remission for fifteen, twenty years and it’s effectively cured, but I think you’ve always got this sword of Damocles hanging over you and you just have to try and put it to the back of your mind and enjoy life.