Graham

Graham updated his story in August 2016.

This is my journey from diagnosis until present day. I am just an ordinary 49-year-old male who has led an active life, spending over 22 years in the Royal Navy, and 10 years working offshore on drilling rigs.

I would like to share with you the series of events that led to my diagnosis and why it is important not to shrug off any ailments.

I had returned from working away in 2009 and, for the first week or so, I had been complaining to my wife that I had a dippy tummy. The tummy ache was intermittent but enough to concern me especially in the morning. During the night or lying down it seemed to ease.

I had been suffering stomach pains for some months

I had in the past been diagnosed with IBS (irritable bowel syndrome), which I thought was being brought on by uncertainty around my job. If the truth be known, I had been suffering stomach pains for some months. The symptoms were very much the same with IBS: weight loss, diarrhoea, dippy tummy, but it never really concerned me at the time.

I bought the usual over the counter remedies for IBS, however these didn’t seem to work (I now know why). After about 10 days I went to the doctor. Normally being male and stubborn I would just put up with the discomfort and pass it off as IBS but something told me to get it checked out.

The doctor prescribed some stronger painkillers and also ordered a routine blood test to check for the basics like liver function, sugar level as well as coeliac disease.

There was concern about my liver function

A week after the blood tests I was at the other side of the UK on a survival course, getting dunked in a helicopter simulator and fighting fires. On the way home, my wife phoned to say that I needed to see the doctor about my blood results as there was concern about my liver function. Again I shrugged it off as something minor. The doctor told me that the blood test results indicated an abnormally high enzyme count on my liver and recommended me for an ultrasound scan. Now apparently the normal count is around 40 (whatever they measure it in) and mine was 149, but it never meant a great deal to me.

While I was having the scan I can remember the doctor talking to me about having gallstones and my bile ducts being dilated or something. I made a comment and mentioned that I should be returning to work the following day, to which she replied, “I don’t think so, I wouldn’t recommend you going anywhere” and said that I needed a CT scan to confirm the finding. At this stage I wasn’t concerned as I was feeling fit and well, apart from the weight loss which I put down to IBS and not eating 2 big Mac’s every time I went out, or 3 chocolate biscuits with a cuppa.

I had the CT scan straight away – no waiting whatsoever. With the ultrasound scan I couldn’t drink for 4 hours prior and I was spitting feathers with thirst. But when I got to the CT scan lounge I had to drink as much as possible. The scan took about 15 minutes and within an hour of having the ultrasound and CT scan I was leaving the hospital.

Walking back to the car I received a message on my phone from my GP saying she needed me to come into the surgery straight away. I thought that they just wanted to say I had gallstones and that they needed to be removed. I got an emergency appointment for just before the end of the day, and my wife said she would meet me there.

The tumour looked operable

In the surgery waiting room I can remember being my usual jolly and jovial self, unprepared for the bombshell about to be dropped. I have to give full credit to doctors who, in times like this must have a horrible task, but there isn’t any good way to deliver bad news except to come straight out and say it: “I am sorry to say the scan shows what is considered to be a tumour in the head of your pancreas.”

Total shock came over both myself and my wife, who was in tears. I think I went straight into some form of denial but we sat there and listened (or tried to) to what the GP was saying, trying to absorb the info. It was a small tumour, approx 2.5cm, and that as far as they could see from the CT scan all the other vital organs were clear from spread and more importantly, the tumour looked operable. You can, by now, imagine how we were feeling.

My GP arranged an appointment with a consultant in the hospital for the coming Tuesday. She said she was very sorry about the news but to remain positive and handed me a letter to give to the consultant and a sick paper for my employer.

I felt I was the only person in the world with a tumour

We both left the surgery in a daze. When we got home we went up to my mother-in-law’s to break the news and, although it sounds selfish, keep the news away from my children at this point. I didn’t think they needed to know until we knew all the facts. We told my mother-in-law and immediate family. However, my children aren’t daft – they knew something was wrong.

I felt I was the only person in the world with a tumour and, although it wasn’t the case, this is why I have chosen to write the ups and downs from my diagnosis. I was under the impression it was all grim, doom and gloom, but it isn’t if you remain positive.

A good friend is a district nurse so my wife took the GP’s letter and showed her. This really just confirmed what we already knew, however to hear it from a family friend seemed to ease the pain of things but also prepared us for the hospital appointment. She re-iterated what was written and the more we heard it the better it felt, “the tumour was small, no sign of spread to the lymph nodes and all vital organs looked clear”. I knew I was lucky, as I had been diagnosed early. I felt that I had a guardian angel standing over me.

I was determined I wasn’t going to be beaten by cancer

Tuesday arrived, and we saw the registrar. He said I had been dealt a bum card and just confirmed the findings on the letter, and said he would refer me to a man who was an expert in his field of pancreatic surgery and my notes would go for a MDT (multi-disciplinary team meeting) the following Tuesday. He requested for more bloods to be taken and a tumour marker test. He did say it had been picked up early and, providing that I come through the surgery, then there was no reason why I shouldn’t make a full recovery. These were the words I wanted to hear because I was determined I wasn’t going to be beaten by cancer.

If being told I had a tumour in my pancreas wasn’t bad enough I was also told that the American company I worked for was placing me on unpaid medical leave. Being told you have cancer and then told your pay is stopped couldn’t get any worse, but we cracked on. We were on rock bottom at this point, the only way from here was up, so that’s what we did, picked ourselves up and got on with it.

We returned home from the initial visit and decided to tell the kids. We knew they had a right to know rather than find out from someone else. We sat them down and I told them exactly what we knew. They both handled it very well with loads of tears from everyone but it was a weight off our minds having told them. My niece took the girls out soon after and had a picture taken in one of those booths and, considering what they had just been told, they seemed to handle it in a very adult way. The picture will remain one of those special ones.

Worry set in, but we remained positive

I had a call from the oncologist specialist nurse who said that the findings of the scan all looked favourable for further investigation (phew another relief). But they would need to carry out a laparoscopy (this is where they insert a camera in the stomach and look inside) to check for spread and secondary growths. Although I was told it was a small tumour and the CT scan showed no spread, the scan will only show up tumours over 1cm so there could have been something else down there.

The results would determine if I would be a candidate to have the major operation: the Whipple’s or the PPPD (pylorus-preserving pancreaticduodenumectomy), because if there was spread, then the operation wasn’t an option. Worry set in, but we remained positive and I have to say my wife was very supportive and said we would just deal with whatever the results were. That week I was like a bear with a sore head, especially the day I was to be admitted for the laparoscopy. Not that I wanted to be moody, but I was worried, concerned and scared stiff if I was to be honest with myself. Although I tried to hide it, it must have been obvious – however the family were great and properly understood.

I had the laparoscopy, and afterwards, the registrar came up and said “we didn’t find anything untoward and everything was as we thought”. Well, I was overjoyed at the news because I knew now I was a candidate for the major surgery.

I was told that I was a priority for surgery. The date was set, about 8 weeks from the initial scan.

I had the operation, followed by six months of chemotherapy.

All my blood results were fine

When I went to see my consultant after the chemo, he said that all my blood results were fine and that he didn’t want to see me again. It was the best news you could want or so I thought. After a while I started to sink into depression because although I had finished at the cancer hospital and been discharged, no one had told me what was to happen next. For the past 6 or so months I had been under the watchful eye of the consultant with my bloods being taken every week, and then all of a sudden I wasn’t seeing anyone; who was looking after me? What happens if it comes back? What do I do? Who do I see? When do I see my surgeon next? I was in turmoil. I didn’t know what was going on and I wasn’t having any checks done.

I did eventually see my surgeon some 6 months after discharge from the cancer hospital. He was pleased with my progress although concerned about the weight that was going on. I told him, by the time I had the surgery I had lost almost 4 stone and now 12 months later I had put it all back on. In my eyes, as the weight was going on then no cancer is eating away at me. All psychological I suppose? He said keep it up but watch the weight and he will see me in another 6 months.

That is about it at the moment with my journey. I am now 5 years down the road. To everyone out there who has been diagnosed with whatever cancer, remember you are not alone. Remain positive and don’t let this terrible disease grind you down.

Update August 2016

Further tests and hospital appointments

Earlier this year, I needed to have a scan as a precaution due to my past history, as some enzyme level in my liver was raised.

Well you may or may not understand the anxiety that I was experiencing with the wait to have this scan, considering the last one I had was when I was diagnosed some seven years ago and again due to a high enzyme count. Now although I preach that you should always get checked out, that still doesn’t stop you worrying about the results. I did try to hide the worry but deep down I was terrified on what the scan may reveal, having come so far.

It took a month to get the appointment. I had the scan, and at the end I asked if there was anything untoward, and I was relieved to hear the consultant couldn’t find any lumps and bumps but did find fatty liver tissue. He said this was nothing to worry about and he would write to the doctor with his findings.

I went along to the GP to get the results with my wife, who has been with me every step of the way and who also shares my anxiety, although doesn’t show it and holds it together better than me. She is a god send when it comes to appointments as she seems to remember what the doctor has said. If there is one piece of advice then if you have any formal medical appointments take someone along to listen. Time wasn’t a problem for the GP. He listened and explained all my results, that I had a fatty liver. He explained that it was a common thing and that a lot of people had it. Treatment is more self management and the way you control your diet or consume alcohol etc.

Following further tests and hospital appointments, I was told that I had to stop taking the Naproxen I was on for my back as this was having the effect on the liver, and redo the bloods in 8 weeks – which are fine.

During this period I had to attend the funeral of the doctor who, in the first instance, sent me for bloods. He sadly passed away early 2016, 12 months after being diagnosed with pancreatic cancer. I was mortified that the guy who I consider saved my life died of the same thing, and if it hadn’t been for him then I wouldn’t be writing this now.

I am really happy with the way things are turning out for me now. I am enjoying work immensely. We have had a break in the new caravan and enjoyed the rest. My girls seem to have settled, and me, well I am looking forward to writing the next chapter on my road through pancreatic cancer. I just wish there was something to read like this when I was diagnosed.

Talking about my diagnosis and my travels through to where I am now helps me remain positive, and although I still have black days I know I have been lucky. Who would have thought that after the initial diagnosis in 2009 (some seven years ago) I would be here writing this now?