Graham, Ampullary of Vater, diagnosed 2009
This is my journey from diagnosis until present day. I am just an ordinary 48-year-old male who, like most, has led an active life spending over 22 years in the military (Royal Navy), 10 years working offshore on drilling rigs and then the usual everyday activities.
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 on the 10thJune 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 in the past been diagnosed with IBS (Irritable Bowel Syndrome), which I thought was being brought on by the uncertainty of my job due to the current economic climate and the rig not working. 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 as I thought it was the worry – it couldn’t of been further from the real reason.
I went to the chemist and 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 thought I’d better get it checked out and paid a routine visit to the surgery and see the doctor. Normally being male and stubborn I would just put up with the discomfort and pass it off as IBS but for whatever reason 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 Celiac disease. I went to the reception to book the bloods with the nurse but was told nothing was available for three weeks and would be better if I went straight to the path Lab in Hospital, I did straight away; again something I probably wouldn’t normally do.
A week after giving blood 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 from the course 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 morning after I got home I went to see the doctor who 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.
This was on a Friday and I was due back to work overseas on the following Tuesday, I told the doctor that unless I had the scan done on Monday it would be the following month before I could attend again. The look of disgust on the doctor’s face at my reluctance to not stay at home and have the scan but, the doctor can only advise, so wrote on the appointment to arrange something for a month later.
Over the weekend curiosity and concern got the better of me as to why it was so important to have a scan and the feeling that someone was looking down on me urging me to put health before work was getting to me so on the Monday I chased the scan up and managed to get an appointment for Thursday at 3.45
The Thursday came around in a flash and I had to give blood again prior to the scan, so off I went to the hospital. I gave my vials of blood and then I wandered around the nearby car sales to kill time before going to the ultrasound suite. I thought it strange at first why a doctor and not a radiologist was conducting the scan. While I was having the scan I can remember the doctor talking to me about having Gall Stones and my bile ducts being dilated or something. I made a comment and mentioned that I should be returning to work the following day, 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 and apart from the weight loss which I put down to IBS and not eating the 2 big Mac’s every time I went out or 3 chocolate biscuits with a cuppa.
Lady Luck must have been on my side because within 5 minutes of having the Ultrasound scan I was in having the CT Scan – 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 thinking how lucky I was not having to go onto a waiting list.
Walking back to the car I received a message on my phone from my GP saying she needed to see me as soon as possible and 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 rang my wife who said she would meet me there.
In the surgery waiting room I can remember being my usual jolly and jovial self, unprepared for the Bombshell about to be dropped.
We got called in to the Doctors and sat down, (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 so this is how it was delivered),
“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 took it upon herself to arrange 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.
We both left the surgery in a daze. When we got home we went up to my mother in laws to break the news and, although it sounds selfish, keep the news away from my children as 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 and really left it there until the Tuesday. However, my children aren’t daft – they knew something was wrong because I was suddenly taking phone calls in the bathroom or outside in the garden.
Over the weekend the letter from the GP to the consultant sat on the mantelpiece just begging to be opened. It had my name on it so I suppose it was for me to open? Eventually curiosity got the better and I opened the envelope carefully. There were two letters; one from the GP for the consultant the other the results from the CT Scan. The letter from the GP was thanking the consultant for seeing me, on the scan results letter there were a lot of things written down that meant nothing to me except a few words stood out: carcinoma and tumour being just a couple and operable being the other
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.
Unsure what the pancreas did or in fact where it was, I looked it up on the Internet. Human nature I suppose urges you to investigate. BUT please take it from me, the Internet is probably the worst place to start as all it does is paint a bleak picture with statistics. What you have to remember is that 10 years ago tumours on the pancreas were virtually undetectable until it was too late, but nowadays with more awareness and more checks being carried out the outcome is better especially with the technology we now have.
A good friend living opposite is a district nurse so my wife took the letter and showed her to answer to the big wording but, this really this 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 appointment in the Hospital on Tuesday. She re- iterated what was written down 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 was under the assumption that someone was looking down on me sending me to the doctors and the doctor sending me for bloods. If I had gone the day before or a day later then I may have come away from the surgery thinking that this was IBS and I would have gone on like that until it was too late. I knew I was lucky, as I had been diagnosed early. I felt that I had a guardian angel standing over me.
Please don’t shrug off any unusual ailments – get them checked out no matter how trivial you may think they are.
Tuesday arrived, initially the appointment was for 1.45pm but the consultant was busy so it was 4pm before we actually got in to see him. In fact it was his registrar we saw. 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 is 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.
Everything seemed to revolve around a week, it would be a week for this meeting or a week for that meeting, you start to get impatient but things are done for a reason. The surgeons etc would have a meeting on a Tuesday and then I would get a call on a Wednesday or a letter informing me what the next stage was.
I forgot to mention that, if being told I had a Tumour in my pancreas wasn’t bad enough I was also told the day I got my scan results 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 with the consultant and decided to tell the kids as they knew something was wrong. We knew they had a right to know rather than find out from someone else. My children are very close to one of my wife’s nieces, Ceri so we asked her if she would sit in with us while we told them (back up I suppose if you want to call it that). Anyway we sat them down and I told them exactly what we knew. I never mentioned the cancer word but they are not daft. They both handled it very well with loads of tears from everyone but it was a weight off our minds having told them. It was handled very sensitively. My niece Ceri 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.
This was just the start, it was ok being the topic of conversation at some MDT but I needed to know what was planned next. I intended to live for some time to come and rise above this. Positive thinking – that’s what is needed.
Tuesday came and went and I never heard a thing from this meeting, I never had a phone number to ring either to enquire so, around 4pm on the Tuesday I rang the hospital and eventually got the consultant’s secretary. Although unavailable, I left a message. There was still no reply the following day so I left another message again. I started to get Impatient, as I wanted to know some answers: What was happening? What had they found? Were the questions running through my head. Eventually I had a call from the oncologist specialist nurse who said that my case had been discussed. They had looked at the findings of the scan and 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.
The results would determine if I would be a candidate to have the major operation: the Whipple’s or the PPPD pancreaticduodenumectomy, because if there was spread, then the operation wasn’t an option. Only 10% of cases are actually operable. So now I was back to the beginning, although I was told it was a small tumour and the scan showed no spread, the CT scan will only show up tumours over 1cm so there could have been something else down there. The wind was again knocked out of my sails and worry set in, but we remained positive and I have to say my wife was very positive, supportive and said we would just deal with whatever the results.
Two weeks passed and I was sent a pre op assessment appointment through the post along with an appointment for the laparoscopy. I was both excited and worried, as having this result would tell me what the next course of action would be. I was chomping at the bit to get it done and I suppose considering from giving the initial bloods to having my Laparoscopy would be 5 weeks I was doing well.
At my pre op assessment I remember having a good laugh with the nurse practitioner about nothing in general but having a giggle and trying to make light of my diagnosis, this was all done on a Tuesday (yep Tuesday is the key day) I was scheduled for the Laparoscopy the following week, all systems were go and things were starting to progress.
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 the results of this determined if I was a candidate for the big operation so 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.
My wife drove me to hospital and I had the usual visits from the trainee doctors to the anaesthetist and the surgical registrar. They asked me all sorts of questions and said that providing there weren’t any emergencies I would be first on the list the following day. I can remember the registrar saying that they didn’t expect to find anything untoward, which was a relief so that settled me a bit.
Also if I had the operation to remove the tumour then I had a 35 – 50% chance of 5 year survival, after 5 years they let you get on with life and consider the cancer gone.
That evening I tried to sleep but those plastic mattresses are the worst things to sleep on. You either sweat or crackle every time you turn over! I couldn’t eat or drink and then there were the older gentry coughing and spluttering all night, so how anyone can say you go to hospital for rest beggars belief!
The morning of the laparoscopy arrived and I was collected and taken to the pre-op room to be prepped then into the operating room. I can remember it being 9.30 when they put the magic milk stuff into my hand and set me off to sleep. I woke up from the op at 10.10 and was wheeled back onto the ward and placed onto another bed. I was fully conscious at this point and about 10 minutes after arriving back 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 would be discussed at the next MDT the following Tuesday and would be told what would happen after that.
The meeting was held and I was sent an appointment to see the registrar the following week, two weeks after the laparoscopy. I was told that all was looking good and that I was a priority for surgery and to expect it within the next 6 weeks.
POW ! I had a call the following week giving me a date for surgery the week after, this would have been about 8 weeks from the initial scan.
The big day arrived and my brother in law Eddie drove me to hospital for the operation and stayed with me all day (My wife couldn’t face taking me and leaving me there). I was given a bed and then I had all sorts of visits from different people. All through this I remained happy and relaxed, I don’t know why because this was a major operation and life dependant on it but I was giggling and having fun with the staff, but that’s just the way I am
Eddie left the hospital at around 9 pm and I settled down for the night not a great night’s rest between alarms on monitors going off all night and the coughing and spluttering. When I woke up I washed and got my gown on and watched everyone else eating breakfast I was drooling at the thought because I was starving. Then I heard the Geordie accent of my brother in law Eddie; he had managed to persuade the nurse’s to let him in and sit with me, it wasn’t even 8 o’clock yet.
Time passed and I was sent for to go down to the pre-op room, funny really because I had to walk down there on my own with Eddie. So off I went, not giving a damn and forgetting about the gown I had on. Well, these gowns fasten at the back so therefore they are open at the back, so here I was making my own way down to have a major operation walking through the corridors of the hospital not a care in the world with my behind in full view of anyone who cared to turn and look at me, but hey I wasn’t bothered!
I had the usual checks, name, d.o.b etc and then Eddie had to leave. I was taken into the anaesthetic room to have my epidural placed in my back, then that magic milk. It was 9.10 am and that was the last I remember until I came around in the recovery room at 6 o’clock pm feeling groggy and sporting a scar across my stomach containing 35 staples and tubes hanging from everywhere.
OK, so here I am laid up in the High Dependency Unit (HDU) wondering what the hell had just happened. I wasn’t in any pain as I had the epidural in my back. I also had a tube coming out of my neck, two tubes which were drains coming out of my stomach, a tube going in my nose for oxygen a catheter in my private parts and a couple of vent flows in my hands for pain killers and whatever else. I was fully conscious when I went into HDU, and was greeted by my wife and sister in law Karen who were just as pleased to see me as I was of them because I knew that I had made it through the biggest operation I would ever have. I was drifting in and out of consciousness and was totally knackered but I was alive!
The following day I was a little more with it and the physiotherapist came in got me out of bed and sat me in the chair. When my wife came in she had the biggest smile just seeing me perched on the seat, I was there for about 30 minutes and then plonked back in bed where I stayed until the following day.
The Surgeon came in and said that the initial tumour was in the duodenum and that a secondary was in the pancreas and that they did the right thing by operating when they did.
That evening I had a blockage in my epidural and the pain was absolutely terrible. They had to call for the doctor to sort me out and I have never experienced pain like it before. But that was first and last time I had any pain. I was administered pain killers every 4 hours whilst in HDU along with the epidural (one of the main reasons I was in HDU was because of the Epidural)
Going into HDU I thought it was to be monitored and for rest after major surgery. Well the three days I was in there I had no rest whatsoever. They had this other patient in who was causing a real nuisance it was obvious that it wasn’t just cigarettes he had been smoking and the commotion went on day and night.
Monday evening they decided to move me to the general ward and I had my epidural taken out and replaced with a morphine syringe to manage any pain myself. I was now surrounded by general folk again but I had no rest because if it wasn’t my alarm going off on my monitor it was someone else’s, oh how I hate Hospitals!
The physiotherapist returned and got me out of my bed and that was the last time I saw them. Once I was up I would pace up and down the ward. I happened to be mobile when my wife came in and she was so pleased. The only snag was I still had some tubes hanging, so my mobility was limited,
On the Tuesday they took out my catheter and wow what a relief – I didn’t have to worry about that tube and, I was now fully mobile as they took the rest of the tubes out with the exception of my drain tubes which were being pulled out bit by bit each morning.
On Wednesday morning I was moved to the far end of the ward with the more coherent patients. It was a rare week where we were experiencing some really hot weather and thankfully I was placed next to a window where I could use laptop and the internet and get fresh air, but I was still sweating due to living on a plastic mattress.
The following few days were just as normal as it could be, wake up, shower, have a little walk around the ward and then suffer breakfast, my appetite wasn’t great but I did try my best. It was now Thursday and, after the doctors had done their rounds, I was told how pleased they were with my progress and that I could go home the following day. That was a great lift as I was initially told I could be in for up to 14 days. Sadly this was short lived as I was being sick (induced by myself) and bringing up what I can only describe as lumps of congealed spinach due to acid build up, so I told the doctors on the Friday and they said they would keep me in for another day just to keep an eye on me. I wasn’t being ill it was just what I think was anti operation gunk from my stomach.
Saturday came and I was told I would be better if I went home, as this would speed recovery. Well, they didn’t have to ask twice and I was on the phone to my wife arranging a lift. The only thing I wanted was an ice-lolly because all week I had been spitting feathers with a dry mouth.
My lift arrived and I was discharged with my bag of pills. It was a lovely day, sunny, hot and to top it all I was going home – something I never thought I would see.
My wife had arranged a high back orthopaedic chair for me next to the window in the living room so I could nose out the window. I was averaging about two hours down stairs and then I would go to bed for a rest, then come back down, walk around the living room and kitchen 10 times, have something to eat, watch the telly and then off to bed again. This carried on all through the day and night for weeks. I would be up in the early hours as all I could manage to sleep was about 2 hours at a time. I would be up in the early hours walking around the living room then having some food and back to bed. I was watching all sorts on the telly and this included cooking programs. I was fancying everything that was on and one particular day I fancied a scone and clotted cream. Eddie went to Tescos for me to get one. I loved it, but it had some serious consequences because, from that night, I was up and down to the toilet because everything I ate was going straight through me. I was prescribed Creon tablets for this, as they would break down the fat.
I was in a state. I was down to 11 stone from 14.5 when I started to become ill and everything I was eating was running out of me. Eventually the tablets took control and I was starting to keep food in, but I was a fraction of my former self and had no clothes to fit me and no money to buy any as I was laid off, so the district nurse put me in touch with Macmillan who gave me a grant to put towards something to wear. What a God send they were.
2 weeks after I got home from hospital, I was walking down the road with my wife on one side with me holding my dog. This was a great feat for me as nothing was going to hold me back. I set myself a goal to get to the end of the road this week and around the block next and managed to achieve this, albeit slowly.
My wife would take me out in the car but it was like riding a rollercoaster and so painful going over the bumps and pot holes but she found a way of keeping me quiet, if I moaned about her driving she would find a pothole to go over!
I started to improve, I kept the attitude that this wasn’t going to beat me and I had to remain positive. I had a family to take care of. I started to put weight back on, albeit a little slower than it came off, but even so it was going on, The tablets had stabilized my bowel movements and I was eating most things without any problem. I can remember once that I fancied a kebab from the local takeaway, so I was driven down to the shop and I ordered one big one with everything on it: sauces, salads, the lot and got home ate every last bit. This was the first time in many months that I had actually fancied something like this, but unfortunately it was short lived because even the Creon tablets couldn’t help the digestion of a Doner Kebab and I spent all night up and down to the loo – but it was worth it.
The months went by and I continued to feel better. The scar was healing and I was more mobile than I had been for ages. I had seen the surgeon and he was happy with my progress and told me that I was to have chemotherapy and this started 6 weeks after surgery once I was well enough to take it. It was standard practice and was considered like a mop up chemotherapy to kill off any stray cells.
I had my first appointment with the oncologist consultant in Cardiff. He said I was to have 6 cycles of Gemcitabine with each cycle consisting of 3 weeks of chemo and one week off (every Wednesday for me) so it would all take 6 months. Bloods were taken each time I went and a tumour marker taken every 4 weeks. The first day I went for the toxins my wife came with me, they had to administer it via a vent flow (I.V in the hand) it took 4 attempts to get the line in my hand. I was like a pincushion. The Chemo drug only takes about 35 minutes to go in but it takes about 30mins plus to get you ready for it so it’s a good hour and half start to finish.
The nurse gave you a list of possible side affect to be aware of. Nothing major like hair falling out which I was prepared to shave off. I did however cut it short and coloured it pink and blue to see what the kids would say, they weren’t amused though!
One of the things I was told was to keep an eye on my temperature and if it rose above 38 oC then to call. Well, this did on the first Friday after my first chemo, so I rang and was told to go to my local hospital and they would run tests and checks. I was there for almost 4 hours and they found nothing wrong, the only thing I could think of was when I took my temperature I had been sitting next to a radiator, what an idiot I felt!
The weeks went on and it was myself and Eddie going now, we had a good laugh and made other patients smile with our humour. The nurse always called us the troublesome two, but we went in again with a positive attitude and would speak to everyone there and hopefully make them smile for a bit. Watching people having chemo isn’t pleasant, as you all know why you’re there.
I was on about month 4 of the chemo treatment when I started to get anxiety and found myself being sick prior to going into the hospital, or after I had finished Chemo or when I came out -never during. I don’t know if it was the smell or just my body saying I was topped up with this stuff, again it never bothered me and once I had been sick I was fine. So much so that we inevitably went down to McDonalds for a burger I thought it funny, one minute I was being sick and the next filling my face with a messy burger!
The last two months got worse each time but again it wasn’t going to beat me. For the sake of a couple hours a week, it could save my life and keep me alive for years to come, so I had to persevere. Even though I was feeling ill once a week, I would come home and go to bed with a hot water bottle and shiver because one of the side affects was flu like symptoms. Again this was short-lived because the following morning I was fine and back to normal.
The last time I had the chemo was awful. For some reason there was a problem with my blood result and it had to be sent away to another hospital for testing. This all put a delay on things. Eventually my last pint of chemotherapy went in and after that it is all a blur, because for whatever reason I can’t remember much of the last session and getting home – in fact not much until the next day. It felt really weird; apparently I was talking as though I was drunk. But I had done it! Chemo finished and 6 weeks off before I had my next appointment with the consultant.
When I went to see my consultant 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 used to try these online cancer forums out but most were American and it was all doom and gloom – not what I wanted. I didn’t want to read about failures, I wanted survival stories. To add to this, my appointment with my surgeon had been cancelled twice, I was in turmoil. I didn’t know what was going on and I wasn’t having any checks done on me. It was though I was forgotten in the system.
I did eventually see my surgeon some 6 months after discharge from the cancer hospital. I asked him why I wasn’t having bloods or scans done, but he told me not to worry as everyone is different and the best way to identify a problem is to rely on human instinct and body reactions. He was pleased with my progress although concerned about the weight that was going on but not bothered because like I told him, in my eyes prior to the diagnosis I was losing weight. 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 and, as it was going on then no cancer is eating away at me. All psychological I suppose? He said keep it up and keep up with what I am doing but watch the weight and he will see me in another 6 months
That is about it at the moment with my journey, not quite a leaflet more of a book but if it helps just one person open their eyes about this and remain positive then it has been worth it all.
To everyone out there who has been diagnosed with whatever cancer, remember you are not alone. Nobody knows what is around the corner and, maybe by having cancer diagnosed early we are the lucky ones because the earlier it is caught, the better chance of survival. The key to survival is to remain positive and don’t let this terrible disease grind you down because once it does then that’s when it makes it harder.
People say about sticking to special Diets to help recovery and stay disease free, well if you listened to what you were told and ate what people recommend then it would be very plain and boring. I have never stuck to healthy eating and always ate what I wanted. Since surgery the only healthy food I have eaten is a Yakult every morning along with yoghurt and banana or a piece of fruit most days and the odd salad. Apart from that it has been the chips, fried eggs and whatever I fancied. It hasn’t harmed me so eat what you want. Who cares as long as you’re alive and happy?