Patient Story: Lyndon
Lyndon was diagnosed in 2006 and had a Whipple’s operation. Here he tells his story in his own words.
Experiencing symptoms
It happened about 6-8 weeks after my marriage to my third wife, who is from the Philippines, thirty years my junior. One morning I was shaving and noticed that the whites of my eyes were yellow, and over the next few days, they had turned almost a gold colour. I was more than a little concerned, it was my wife, who told me to go to the doctors right away. I made an appointment with our local GP surgery.
My GP examined me and asked a few questions, and then told me not to worry too much, because he thought it was maybe gallstones. He said he would refer me to a doctor at the hospital in Grimsby. It was only a few days later that I had my appointment at the hospital, and the doctor there told me not to worry because he thought it was not serious and was probably gallstones. He said he would make an appointment for me with a surgeon to have the stones removed, so I went home a little relieved.
About a week later I received a letter from the hospital saying that my surgeon was on a working holiday in Pakistan following a disaster there, and they felt it was better to transfer me to another consultant, which turned out to be at Castle Hill Hospital near Hull. I attended my appointment a few days later and was told I needed to have a telescope-like tube put down my throat to inspect me from the inside, and before that I needed an MRI scan, so a bed was found for me a couple of days later.
I packed a few essentials this particular morning to take with me to the hospital, so my sister drove me and my wife to the hospital that morning. I was feeling a little apprehensive, which I think is normal. It’s quite a long drive there, about one and a half hours across the Humber Bridge.
On arriving at the hospital, the staff were polite and settled me into a ward. I waited for the doctor to see me. The doctor arrived and told me I was being sent for a scan first, and then for the microscopic tube, which felt more like a full sized telescope when it was being passed down my throat, even with the drugs that were given to me to help stop the gagging. I was booked in for an overnight stay. That night was quite eventful because the procedure forced a lot of air into my body, and I spent most of the night making very loud explosive farts [sic], and I was not the only one experiencing the same effects!
The Diagnosis
You have to understand that from this point on everything is a little vague with regard to the timings of everything, because my consultant came to me and put his hand on my knee, and told me I had pancreatic cancer, and that I needed an operation and chemotherapy, to give me maybe 2 yrs otherwise maybe only 6 months or so, but it’s definite that my cancer is terminal.
I found out years later that it was a stage 2 tumour, because at this time nothing much sank into my mind, it reminded me of the television advert of Macmillan, when the people collapse. I felt the same, but as normal for us Englishmen, we put a stiff upper lip on it. An appointment was made after the weekend, for a Monday morning for me to have the surgery done. I had to check into the hospital at about 6.30am, which meant a really early start. My sister and her husband drove us to the hospital that morning.
My consultant saw me in my bed and explained to me what he intended to do, which was called a “Whipple’s Procedure” which involved removing half of my pancreas, half my stomach, all of my gall bladder, and part of my intestines, and re-attach them together, which would take about 7 hours or so in theatre with a surgical team. If I survived that, which I heard later is not guaranteed by any means, I would go to intensive care for two days. A little later a nurse came and gave me a shot of something, I believe it was to calm me before the op. So I waited in my bed, for the dreaded moment to arrive. To be honest, my mind was thinking that maybe it’s best if I don’t survive the op, because it sounded like a nasty way to die. I should also add that up to this point, I was still smoking, and sneaking out through a side door in my dressing gown for a quick puff before anyone noticed I was missing. I couldn’t stay out for long anyway coz it was December and blooming cold!
Anyway, to my relief I was told they could not do the surgery because there was not a bed available in the ICU, so I was sent home and told to come back again a couple of days later. On that occasion I had a slight fever, so they would not operate, so I was sent home again and told to return a few days later, providing there was a bed for me in the ICU. The relief for me was massive, but I knew sooner or later this op was going to happen. The next time I still had a slight temperature, but the consultant said he did not want to wait any longer and that they would take a chance and go ahead with the operation. So it looked like this was it!
Christmas had passed between the initial tries and, during that time in hospital, one Saturday morning I asked if I could go home for the weekend. The ward sister said she would call the registrar and ask him. The registrar came and examined me. She said that I was still running a temperature so it was not possible for him to send me home. I was really bored, and did not feel too bad in myself, so I asked the sister again if she could ring my consultant at home and ask him if I could go home. After about 30 mins later she came back and said that my consultant said I could go home for the weekend but that I must be back on Monday morning early. So, one win for the patients!! He he, we were in a New Year now, maybe my luck would change??
Undergoing a Whipple Procedure
On the Monday morning, after getting settled back into my ward bed, the porters arrived at my bed sounding very cheerful. I’m sure if it was them having this op, they would not be so blooming cheerful! Anyway, my wife went with me to the theatre while I was being prepped. She kissed me and left. The one thing I always hated was needles. They put a cannula into my arm and counted me down from ten, and then the blackness came.
I awoke sometime later, not sure how much later, but it looked dark. I only moved a fraction and it sent some of my bedside equipment into emergency mode with bells and whistles going off. I noticed that a nurse was sat at a desk at the end of my bed. I did not notice much else because I felt very weak and drowsy. It seemed like every 15 minutes someone took my blood pressure. A few hours later, I came round again and noticed that I had 4 tubes coming out of my stomach area. Later I was told that three of them were draining organs and one was feeding me directly into my stomach. I also had wires and tubes coming out of my neck, and one attached to my spine; the same as women giving birth get. I also had some wires and tubes in my arms, so I was truly wired for sound! It was later the following morning, which was less than 24hrs that I was moved back to the ward. Either I was doing much better than expected, or I was being kicked out to make room for some other poor soul! I think probably the latter.
I lay in my bed in the ward, the staff still annoying me every hour to take my blood pressure and temperature. My mind was still a little blurred with everything, but I started to notice the other men in my ward. They looked a little healthier than I felt at this time and the one thing I do remember quite clearly was the disgusting taste and smell of the food they were pumping into my stomach. It was a cream coloured substance, nothing like any food I have ever tasted before, even if it did not touch my mouth or throat.
It was evening time now and my wife and her sister came together with my daughter and one of my sisters and her husband. I did not notice at the time that my wife and family were visibly shocked to see me in this pitiful state. Everyone later told me that they thought I was not long for this world and seeing me like that ,with a large weight loss, my newly married wife thought she was to become a widow soon and did a lot of crying when she was away from me at home. She was worried about what was to become of her in this new country, with hardly any friends. It was a few days later that I told her she could walk away from me if she wanted. I would not blame her for that because it was not fair for a 25 yr old woman to be tied to a dying man. But she said she was my wife and she loved me, and that it was her duty to stand by me through this, whatever the outcome.
On awaking on the third morning of my incarceration, I was told to get out of bed and sit in my chair for a few hours and that the physiotherapist would visit me later. I was given this clear plastic looking toy with a plastic ball inside it, and told to blow or suck into it to help my lung function which, I might add, felt as if they were trying to get out of my body through my back. I assumed that is was because all my organs were swollen from the surgery and were pushing my lungs upwards. However this did not stop the nurses from telling me I should try to go for a walk soon. I thought at the time that they must be joking, or that I had woken up in a concentration camp of some kind! All I wanted to do was to sleep. I just felt drained, so what I used to do over the next few days was to get into my chair near the end of the nurses’ shift and, when the next shift came on, I would tell them I’ve been in my chair for a long time and wanted to get back into my bed and get some sleep. I could not move far because of all the tubes in me. The worst and most embarrassing was the fifth one, which meant I did not need to go anywhere for a pee. One thing you need to overcome more than anything is losing your dignity, showing everything you were born with, and with the hospital robes showing everyone your bare bum, every time you go for a walk. The other trick I did was to find a drip stand that had squeaky wheels, so after a few minutes everyone was happy to let me go back to my bed again.
I think it was about the fifth day that they removed most of my tubes, especially the cream gunk one that was supposed to be feeding me, to my delight.
The main tube left in was draining my pancreas, I think. Black liquid was coming out of it, and needed emptying a few times a day. I had also got rid of the pee bag (catheter) by this time but only to find out that I had to collect my poo in a cardboard bedpan and give it to the nurses to be analysed. It was around this time I was given a blood test by a junior doctor. He tried to get the cannula into my vein, which was a little painful, but could not do it, so he tried a second time, but could still not get it into my vein. He was a little nervous and embarrassed by this time and said he was sorry but needed to try a third time. I firmly told him that I would not allow that, and that he should go fetch a nurse to do it, which he duly did. She got the cannula into my vein on the first attempt. Also every day I had to have an injection into my tummy, to help prevent thrombosis, as well wearing white stockings for the same purpose.
It was becoming boring by this time, the hospital food was horrible, so I was not gaining my body weight, much to the despair of the doctors. It was not helped by the disgusting tastes and smells coming from my throat which made everything taste like an open sewer. By the way, before I forget, about my hate for needles, well, even at this early stage, I had more injections in that week, than I had ever before in my lifetime!
It was about this time that the nurse told me that they were coming to remove my Elastoplast tape bandage that was across my stomach going from one side of me to the other. This area was still very sore as you can imagine. Anyway the nurse came and removed the bandage, and I looked down at it and thought, OMG they have put a zipper in my stomach, but realised a moment later that it was over 30 large steel staples going across me. Ohh! What have they done to me!
Almost every day I asked when I could go home, but was told I needed to start gaining some weight, before they would allow that. I thought at that rate I would never leave this hospital. Getting in and out of bed was always a problem, even turning over also as sometimes the tube would get disconnected and stain the bed so they had to come and change all the bed sheets. My state of mind at this stage was quite good considering everything. I tried to think positive, which was easier than you think, because at the time your mind and body are fighting furiously to stay alive and survive this trauma.
I think it was a few days after that my consultant said he had given up on me regaining my body weight in the hospital, and he had decided after a chat with the dietitian to let me go home because he felt I would gain more weight at home. I agreed with him on that score, my favourite food at that time was jelly and ice cream, because it was not affected so much by the awful smell and taste emanating from my throat, so made it more palatable.
Life after Surgery
I think it was a few days later that I was given my parole and release date. I can’t remember whether I had had my staples removed by then or later, but I still had the organ drain tube attached by a “T” tube, which they told be they would remove at a later date. To be honest I was not really paying much attention to that, my only thoughts were about going home. Don’t always believe them when they tell you in won’t hurt. The staple removal was not too bad, but the T piece was very painful: they just yanked the tube out of my stomach. I can’t remember if the T piece came out with the tube or if it was to stay inside me and degrade.
The day arrived that I could go home. It was at this time my thoughts recalled some of the thanks I should be giving to the wonderful surgeon, who’s name was the same as a famous pottery, and his team. I did notice that he seemed to be difficult to work for, being very demanding in everything including his status there, but to be truthful about him, he was the only consultant I witnessed there that did not talk at or down to his patients, unlike almost all of the other ones.
Some years later, I spoke to one of his team, who told me that although he was so difficult to work for, he was the cleverest person that they knew, and if they had to have major surgery, he would be the one they would most like to have do it. Anyway my sister had arrived with my wife to take me home. This was when I came across my first hurdle on leaving hospital, which was the pain of sitting in a car driving me home. I had realised that because of my weight loss I had no bum now and I was sitting on my bones. But I managed to survive the pain and finally arrived home, which was great. The hospital had arranged with my GP to provide district nurses to visit me at home every day to take my blood pressure and temperature and empty my drain bag.
Now at last I was in control again and able to eat whatever I fancied, and the dietician told me to drink lots of milk shakes with ice cream in it. Wow, this was great! It was not long before I started to regain my body weight again. It was also the time I stopped smoking, (which I had done since I was 15yrs old and smoked between 40-60 a day), but because of my lung stiffness, I decided to give my lungs a chance to recover.
Starting Chemotherapy
The weeks started to pass quickly, and I received my appointment to go to the hospital for my chemotherapy. On arrival there I was approached by a nurse and asked whether I would give my permission to go on a clinical trial being done by Cancer Research UK. I agreed to this as it seemed a good idea at the time. I was told that the trial group of about 8 people would be split into two: half given the normal chemo drug and the other half the trial drug, and I did not know in which half I was going to be at that time. After a short wait I was sent to get a blood test taken, something to do with my white cell count, to see if it’s ok to proceed with the chemo. This would be done every time I had to have my chemo done. This is when the needle race really took off at a pace, with the blood test first and then the cannula after. I learned to try and ask for a pink one because it was one of the smallest ones and a little easier to get in my veins. I really appreciated the staff there, they were cheerful but very understanding of my situation.
I was shown into a room that had about eight armchairs in it, most of them electric recliners. I was shown to a chair and was connected up to my chemo drugs. This is when I found out that I was on the trial drug, which was great because it only took about 30 minutes to get it into me. Some other people had most of the day there but after my 30 minutes I was allowed to go home until the next time. So my schedule for the next 6 months was every other week for my chemo after my blood tests, and then after the chemo finished I had another CT scan every six months and blood tests every 3 months. Every time I had a CT scan there was this tension waiting for the results, and the great relief when I was told my scan was clear. Until the next time, this would be my life for the next few years.
Getting on with life after treatment
At home my life was as normal as I could make it. I ordered 7 pallets of block paving bricks and, with the help from my slim five foot nothing wife, I laid a patio in my back garden to the shock of my visiting nurse! But I did make one mistake and that was giving myself a hernia. But it gave me something to think about, to take my mind off my impending death. I also decided that I needed to make some decisions about my wife and try to give her some security for her future. So I decided to build a house for her in the village she grew up in and where her parents lived. So we set about buying the land and hiring an architect to put my sketches onto an official drawing and get planning approval. So the build started. Over the next few years I went to the Philippines every year for more than a month each time. I could not get travel insurance so I just took a chance and went without, to try and make the most of my time left.
It was now approaching the 2 year mark, which is very important if you have cancer, because it’s when the odds start to swing more in your favour. Every time I went for my examination and scan and blood tests to get the results, the team there were a little surprised that I had turned up again, because to be frank they thought I should have died by that time! I found out later that the other consultant I had at this stage had ordered my tumour to be checked again to make sure it was an aggressive cancer tumour as first thought. This was confirmed by the lab, so they could not understand why I was surviving this – maybe it was my guardian angel?
It was also around this time, that the consultant said to me that my scan was clear and also my emphysema was no worse! Well, I did a double take and thought to myself, what did he say? Emphysema? I did not even know I had that anyway. I think maybe they thought it was not worth telling me about that before because I was going to die soon anyway from pancreatic cancer. This was annoying in other ways, because I had started smoking again after the chemo. I had thought ‘ no point worrying about lung cancer, because the pancreatic cancer was going to kill me first anyway’ but now, knowing that, I would not have started smoking again after the 6 month break I had from it, but too late now anyway.
Most evenings at home I used to go outside in the dark and look at the stars. My house was in a small Lincolnshire village so it was always very quiet and very dark at night. I used to look up and see my favourite star sign, which was Orion. I wondered if he was fighting for me maybe but looking up, it did put everything in perspective, in as far as showing me how minute and insignificant I was in the great scheme of things. So all I could do was to try and be strong in my mind and think positively about my cancer, and not let it bring me down. I am sure if I had let it worry me to the extent of putting me in an armchair staring into space, I’m sure I would not have survived very long. I think that is the most critical decision I made. The other strange thing I did at that time was to regularly urinate in my garden at night. In my mind I was leaving something of me here, to prove I was here, but I had to stop that after a while because my wife asked me about the smell of urine in our garden, so I thought I had better stop doing that now!
I also have to inform you that after my chemo finished my wife asked if it was possible for her to have a baby with me, even if I was not going to be around for very long. The doctors said it was ok to try now because the chemo had ended a few months before. So we started to try. The first time I was shocked to find my sperm was pink, I assume from blood that was still in my system from the surgery. My wife really wanted a baby, it was an important stage of her life, and the need to have a family was great, even if she was to be alone. So to both our delight and surprise she became pregnant very quickly and nine months later, after 20 hours labour and an aborted forceps delivery and then an emergency c-section she gave birth to a lovely daughter, Samantha.
I wanted to spend as much time as possible with my new baby daughter as possible so, against the normal advice, she slept in our bed where I spent hours looking at her while she slept. After a while my wife decided she needed to get a job. Because my last work was in property development; buying and selling houses to sell on or to keep and rent out, health was reasonable, but my stamina was nowhere as good as it was before the surgery. If I did too much, I would get very tired, and shortly after that feel very ill. It also brought on one of the signs that you need to watch out for while your cancer is in remission: that is diarrhoea. Apart from all the other aches and pains you get that worry you sick, you think that it might be the cancer returning. We used to take Samantha with us to the hospital to the delight of the staff and outpatients. She is half Filipino, very pretty and cute and as bright as a button, she was my miracle child.
On one of my appointments I asked my study nurse about the other people that were in the study along with me. She shocked me when she said that it was only me and one other person that had survived – all the others had died. I mentioned this to my consultant who told me that I was doing marvelously well, and that if I continued like this to the 5 yr stage, maybe I could beat this thing. It gave us all, myself and my family, great hope and eventually I reached that stage where all my scans were still coming up all clear. They told me also that from then on the odds were very much in my favour and the cancer was unlikely to return now, and that my scans should stop soon, because the risks were greater now of getting leukaemia with too much radiation in my system. I was glad to hear this because after about 13 CT scans I had about enough of them. I was still taking my Creon tablets every day which helped me get the goodness from my food that I needed. But one of the biggest problems for me over this time, was that there was not much experience around in dealing with me after I survived because not many do survive.
For the last few years my health seemed to be at normal level – well normal for me anyway. The biggest problem for me at that time was the banking crisis which decimated my wealth almost overnight: with high interest rates pushing all my mortgages into arrears, and with no income apart from the rents and my wife’s meager earnings from being a home care assistant, it was not enough to pay all of our bills and all the credit card debts and overdrafts, which were no problem when the housing market was buoyant. But now it was almost impossible to sell a house and the value of the ones I owned was fast dropping through the floor. So now it was about 7 yrs from the date of my surgery. We had managed to stop any repossessions by the building societies and have almost cleared the arrears now, apart from the house we live in, which had the repayments double a couple of years ago because of the interest rate and the very greedy banks and building societies. Also at this time my wife had her way with me, in more ways than one, and we now have a wonderful little boy named Joshua.
So, with all our hard work now and in the future, maybe I can hang on to my assets to pass on to my children, including my two daughters from my first marriage especially the younger one of the two named Helen, who is very dear to me. Without her help financially through this difficult time, I think I would not have survived and also her support for my present wife and children which she loves very much.
Lyndon, November 2013