It was a bit of a shock when the cancer came back again, because I was on cloud nine. I thought that was it, I’d cracked it, and I’d gone so long that, you know, it couldn’t possibly come back, so again that feeling of denial crept in.

How did they know it came back? What was the sign?

What was the signs? Right, yes of course, I mean during the period of remission the hospital monitors how the cancer is behaving by giving CA125 tests, and we got to the stage when we had gone from one month, two months, three months, four months in between tests, and that’s when it came back, when we had just got about as far as four months.

The count went up and then we had to sort of look to see what sort of chemotherapy to have, and again I opted to go on the trial, the ICON4 trial. And with that one I was given cisplatin simply because with the carboplatin I’d had the beginnings of an anaphylactic shock the time before when they had tried to give me an extra one, so I went into hospital each time and had cisplatin, which I was given on the ward.

And when your tumour came back each time you said you knew before your doctors knew that it was coming back. Can you tell me how you knew, what were the clues?

Oh the same feeling of heaviness, and not inability to move your bowel, but the feeling that you need to move your bowel but the muscles aren’t obeying your brain. And sometimes pain. But mostly that, that almost indescribable feeling really of thinking, Oh-o, you know, not like a pain and not having felt ill, but that was the first sign on most of the occasions, not all of them but most of them.

And the treatment was successful at the time, I was in remission, I was in remission for eight years, and very disappointingly, and also quite devastatingly, I relapsed in August, yeah August 2000. Stage 4b this time, absolutely everywhere, and that was a massive shock. It was, I was married at this stage, I was out of the military, out of the military and in commercial aviation, so my life had moved on quite considerably since that time, and also the disease had really ripped into me and I hadn’t really realised it, but when I look back at the symptoms it all fell into place when I was diagnosed. Subtle things like losing weight that I thought, Well I’m just getting fi, because I was doing a lot of exercise at the time, but what it was actually I was eating like a Trojan and it was, nothing was, I wasn’t putting weight on, it was quite a, I don’t know, it was a subtle thing initially. And then I realised that I wasn’t feeling well, I was feeling tired, I was feeling listless. I also started to get the occasional night sweat. And when I pieced everything together in a big pot, so to speak, it then pointed at the disease again.

But it took, I was actually flying at the time when I thought I’d better go and see the doctor. I was descending into an airfield in Turkey, and we were going through cloud, the lights were flashing against the cloud, as we descend through the cloud, and I got disorientated and in nearly twenty years of, well twenty years of flying I’d never been disorientated in my life, not in the way that I was experiencing anyway. So it was a bit disconcerting. I spoke to the other pilot and told him that I was experiencing this disorientation, and it was fine, it wasn’t dangerous, I just felt slightly off. So I just said, Well I’m working through it, I’m still on instruments and everything’s fine.

We descended, we landed, no problem whatsoever. Now if it had got worse I would’ve just handed control over, but I didn’t think anything much of it. I had a little bit of stomach pain at the time and I just thought, you know, It could be airline food or somethin. But that was starting to hurt, and when I got back I went into the simulator for another bit of training and then I got similar disorientation again with some of the lights in the simulator and the different visual cues that I had, I got disorientated again, I felt funny, I felt like I was getting a sort of fluey type sort of feeling as well, and just everything I thought, all the other things combined I just thought, Oh well I’ll go and see the doctor and see what’s going o. And I had a little doubt in my mind whether this had come back again.

So then that was it. I went to the doctor, he actually found a lump in my shoulder area which I hadn’t even noticed. And they whipped that out, did a biopsy and it was the disease again. Also the scan showed it everywhere, absolutely everywhere’ it was in my liver and my spleen, not in my lungs that time, subsequently I did discover it in my lungs, but all through my lymph nodes throughout the whole, everywhere above and below the diaphragm, so it was quite extensive disease.

And started the treatment, and that was it really, I just kicked off on, in fact they initially diagnosed me with having non-Hodgkin’s because the type of Hodgkin’s that I had, I think it was, it was a type that could be quite easily confused with non-Hodgkin’s, so lymphocytic, histiocytic, something like that, it was. I started getting treatment for non-Hodgkin’s first of all, and they stopped that because a very renowned professor looked at my slide again and looked at the pathology of the biopsy and said, Actually no it&rsq

December 2006, as I say, for the very first time I can remember driving the car back from the base training, and just felt nauseous, didn’t want my tea. I didn’t want to eat which, again, for a guy that loved food, was out of character.

Went through the trip, came back, I remember had the Christmas, I remember speaking to my wife, saying that things aren’t right here, and I got a little bit upset because, again, I think I felt possibly that there was a reoccurrence of the illness. Straight after Christmas got in contact with the specialist hospital and had an appointment.

They booked a CT scan; the scan didn’t show anything. The blood tumour marker, the 19-9, which is the cancer marker for pancreatic cancer, didn’t show anything.

And then I spent well over a year going back to the hospital saying I don’t feel well. I started to get terrible diarrhoea, at that time it was diarrhoea where very little notice from the feeling of needing to go to the toilet to going to the toilet would be sometimes a minute, two minutes. I couldn’t get to work very well because sometimes I’d need the toilet on the way to work. And then literally I’d have to find different toilets on the way, so that if I did need to go I could divert.

And didn’t, well I wasn’t happy really. Losing weight, every time I went back to the hospital I was losing weight at quite a dramatic rate and saying to the hospital, There will come a point where I can’t lose much more weigh.

It will become critica. Luckily, because I was a big guy, there was quite a bit to go. I mean now I’m nine and a half stone.

Eventually we decided to go private. So I went to the local hospital, back to the original physician that I saw who had given me an indicator of what he thought it was. Saw him. He ran a series of tests and did a CT scan.

And then out of the blue a letter arrived from the oncology unit at the local hospital for an appointment. I went to that appointment, and again, you know when you’re sat in an oncology department waiting to see a doctor that there’s only one thing that they’re going to tell you.

I went to see the doctor, and he said there was a re-occurrence of the disease.

What was your reaction to getting that news?

Relief really, because for a year I’d been sort of saying, Look, there’s something not right. I’m losing weight, I’ve got nausea, I’ve got diarrhoe. And again, at one point I even went to my local GP because I didn’t know where to turn to. No-one was sort of, seemed to be listening to me. And my local doctor basically sort of more politely offered me psychiatric care. Is that the right word? Counselling? Holistic, an holistic approach, Maybe it’s in your mind, and its mind over matte. And that just, ah, I was, didn’t openly say it but I was absolutely fuming.

Because in my mind I knew it was there, and I think, oh well this is my seventh year, I’m a seven year survivor, and I think one of the reasons why I’ve been here so long as I seem to present symptoms very, very quickly. Like when the original tumour came, it was a very small tumour which blocked the bile duct, which caused the jaundice which then flagged up the tumour.

Anyway when I was going back to be monitored regularly because of the chemotherapy tablets I was taking, a little tumour in my groin was looking just a bit bigger than it perhaps should have been. I’d say it was about the size of a Malteser, and that was enough for the surgeon to think, well it could be a high grade lymphoma, but to be on the safe side they sent me to a surgeon to do a biopsy. And that was fixed for a bit less than three weeks later. And in that three weeks the tumour that started off as the size of a Malteser grew to the size of a cowpat. It grew absolutely phenomenally, and I thought, Oh dear, should I get in touch with them and tell them And I thought, I don’t want to be a scaredyca, and I know that one week in the life of a tumour is not a long time, which in fact is almost true almost every time, but in my case it was a bad idea because I was due to go in on the Tuesday for day surgery to remove this, it had been a little tumour, and on the Saturday night and the Sunday night I’d found, when I lay down to go to sleep, I couldn’t breathe properly, I had to sit up. This seemed to me very funny. I’m asthmatic, so I took a bit of extra asthma medicine; that made no difference and it didn’t seem like asthma anyway.

So I was very puzzled by this, and on Monday morning, the day before the due date of the biopsy anyway, I rang the registrar at the hospital, who said, We’ve got a bed, come on i. So I came on in, went on the bus carrying a little holdall, slowed down a bit by my breathing. And it turned out that I had something – they recognised this straight away – called pleural effusions. And that is, normally your lungs aren’t attached to your rib cage but they abut closely, there’s no spare space. Well there’s a minute amount of space and that’s normally washed through with lymphatic fluid that comes in at one end and is drained off at the other. And what sometimes happens in late cancer is that the drainage duct that siphons it off gets blocked with a tumour, and when that happens – or partially blocked – fluid builds up and your lungs can’t expand. And so they drained my pleural effusion.

And by then the tumour, I suppose it would probably have been about that big, but because it was in my groin and I spent a lot of time sitting down, it was like a cowpat with a fold in it. And it’s, you know, you couldn’t have worn tight fitting clothes, it would have been too visible. Anyway if I’d gone a week early I’d have saved all the pleural effusion and it might have made an enormous difference to the whole of the following story. But anyway, I didn’t, and they then had an argument between the surgeon and the oncologists about how much they’d take out. Because the surgeons, they wanted me to start chemotherapy as soon as possible, and that meant making the smallest operation they could so that the healing was minimised. But in the event the surgeons who took out, were going to just take out a bit of the tumour, took it all out because it had liquified and died, the cells had died in the middle, so it was a bit of a mess.

The CA125 test that they do regularly, because you’re checked after each two months, showed that my count was beginning to go up, and I was offered another course of the carboplatin again. This was another session or six sessions, which lasted this time for six months.

I was in remission for a year with this one.

During the early months of 2001 I began to get some of my symptoms back and I was offered a new drug, another trial drug which would be very easy to cope with because I could inject myself three times a week at home and only return to the hospital once a month to collect more of the medication. I had this drug for three months and genuinely thought I was getting better, because I think it was psychologically because I was actually taking part in the treatment, and I was very disappointed of course when the scan showed that it wasn’t actually helping me at all, and it was suggested that I start some more treatment that would, hopefully, knock this other tumour on the head.

Now this time, Taxol, which was a drug my sister had had years before, was being offered, and it was explained to me that this time I would have fewer symptoms but that I would lose my hair. I was meeting up with quite a number of ladies in the Department that were losing their hair and at the time didn’t seem to bother them much. I was allowed to go and choose a wig, which I’ve never worn because it was rather uncomfortable.

I was due to have six cycles of Taxol but the drug seemed to be affecting my toes, sometimes they felt very cold and sometimes they felt numb, and it was decided that I could be let off my very last cycle, and the CT scan after that showed a very good result indeed, and for the last eighteen months now I have been in remission.

But the point of discussion of course is lymphoma, and I went through a form of chemotherapy during the mid part of 2000 and then they took me in for higher dose treatment. Having harvested the stem cells from my body they took me into hospital once again and I spent some four and a half weeks in a special designed room where they could use filtration equipment, and a room with my own facilities and so on, so that I could be protected from infection, as the white blood cell count was taken down to zero before the stem cells are put back into the human body. And certainly because the white blood count being so low, then I did get one or two infections along the way, which did stall my exit from hospital. Having said that, it was successful, and for the next four and a half years I was free of the disease.

But the treatment I’m having now is very mild, although it’s taking a long time because I’ve been having it since the 5th June when they inserted the Hickman line, I’ve been having chemo on a three weekly cycle. But it’s very mild, I don’t lose my hair. And one session I have I have a double dose, I call it my double whammy, I am poorly for two or three days, I just hide under the duvet because I’m no use to man or beast then. And then the second one is mild and is no problem to me, and then the third week I have off. You just have to learn to live with it and make the most of the good times when you’re feeling well, and that’s always been my philosophy. I’m not going to waste my good days by being miserable and worrying about what could happen, will happen. Just get on and enjoy life when you can.

So this mixture of what was it, carboplatin and

Gemcitabine.

ou’ve been having that since last May?

Yes.

And you think this is the end, or will you have another one next month?

This one is the end of the course. I have, as I say, my double whammy, the gemcitabine and carboplatin tomorrow, and then the following Friday the gemcitabine and that is the end of the course. And I have asked my consultant, Is that the end for a while But he’s not committed himself, but I justSeven years on I think he means that, yes, that is the end and we’ll leave it be for a while. Because I do feel well and my tumour has shrunk from the naked eye. If you really prod hard you can find it but it’s so small it’s not worth worrying about, and as you can tell, I’m very strong of voice and I don’t cough.