Dennis

Dennis updated his story in August 2017.

Hello to all readers of my story, my name is Dennis and I am 62 years old. I was a self employed Joiner/Builder before I embarked on my journey into the world of being a “cancer patient”.

My tale starts in mid 2006, when I began to notice I had itching in my back and my wife Ann suggested that I should go to my GP to have it checked as I worked outside practically 90 per cent of my time. I was never one to sunbathe as such, rather always doing something outside in the fresh air.

The checks proved negative but my GP told me to keep an eye on it and if got worse then go back to see him. It did not seem to get any more severe and I suppose like a lot of physical workers, I just put it down to sweating and dusty conditions and never thought no more about.

We move forward one year to June 2007 and I was looking forward to seeing my favourite singer – Barbra Streisand – live in concert in Manchester. The show was spectacular and well worth the visit. The itching was still present but again I did not feel it was strong enough to make another visit to my GP.

Developing new symptoms

On 1 August, we flew to Spain on holiday and everything was fine but 4 days into our holiday, I started to feel a slight discomfort in my lower abdomen and placing my hand there, I said to Ann “my stomach’s off” – this was the extent of my medical knowledge to think my stomach was actual one foot below where it really actually was in my body.

I started to lose my appetite and my urine was the colour of tea without milk, so I went to a chemist and bought some Imodium capsules but this made no difference. Then on the Friday, I went to the Spanish doctor in the village who examined me by pressing extremely hard all around my abdomen – but I felt no pain, only the original discomfort. He gave me a prescription for some syrup and said to go back to my GP in the UK if it still persisted.

Jaundice and tests

We were flying back on the Wednesday, but on the Tuesday I woke to find that my eyes had gone yellow and now noticed that I was feeling very tired and unwell. My wife Ann kept saying it is probably gall stones and we can sort it out, we go home tomorrow.

On returning home, firstly I decided to give up drinking alcohol and still do not drink to this day, then I went to my GP and he could see that something was drastically wrong. He sent me to our local hospital for tests which included ECG, X-Ray, bloods and ultrasound scan. The ultrasound could not find my gall bladder and they sent me to another hospital to the Endoscopic Dept. for a CT scan.

The Endoscopic Department were not very helpful in advising me what they could or could not find, and this disappointed me because I want to know everything that’s going on. They said they were transferring me to a hospital in Liverpool or Manchester, and at this point I knew that this was serious and not gall stones.

After some discussion, I told them that I preferred Liverpool, which was easier for my family to travel to – an interesting decision for a Manchester United supporter!

My diagnosis

I went to Liverpool on the 8th September and on Tuesday 11th 2007. The Consultant came and advised me that they would attempt to put a stent into my bile duct which was blocked with a tumour, this was a temporary fix to give them more time to see what could be done. He advised me that without an operation I would probably have six to nine months left, assuming that the stent was put in place and it did not block.

At 11.30, I phoned Ann to tell her the news and she was obviously very upset, and I told her that the consultants would discuss my case to see if they could operate or not. This time was probably one of the worst times of my life, to know that I was only 61 years old and there was lots of things I still wanted to do, also the fact we had a house in Spain and retiring there was starting to disappear. What was the point of the last ten years, seven days a week being self-employed to work for a goal that may now never happen?

The stent had worked and I could have surgery

On Friday 21 September 2007 I was sent home as the stent seemed to be working and I had to wait for a call from the consultants for their decision. The call came and on 26 September I went to Liverpool to be told that an operation – Pylorus Preserving Whipple – was possible in about four/five week’s time.

When they told me, you don’t know whether to jump for joy or worry about the all-day operation I was about to undergo. Following the anaesthetic and general health checks, I was informed that I had an irregular heart beat and this would be sorted out as well. So I then waited for the call to go into hospital. All the time I was waiting it was on my mind – what happens if this tumour is growing so fast, will the call come too late? As it turned out my operation was put back a week and this only added to my concerns.

Preparing to have surgery

I booked into the ward the night before and for sometime that night you are constantly meeting all the staff connected with having a major operation, checking your health, signing consent forms, anaesthetic staff and of course the nurses that look after you on a day to day basis.

There comes a point when you think the system overpowers you and at this time you hope that the knowledge and experience of the ‘team’ as I called them comes into place. Of course the alternatives I had were not that brilliant, so in a sense I had nothing to lose and everything to gain.

On the following morning I was wheeled into place upstairs and I remember as the anaesthetist told me he was going to put me under, I saw a black and white clock on the wall showing 0950 hours and I wondered was this the last thing I was ever going to see!

After sleeping all day, I felt that I was moving and this voice was saying “come on mate, wake up, everything has gone fine”, and when I opened my eyes, the first thing I saw was a black and white clock showing 1810 hours.

I thought it was ironic that the last and first things I saw through the operation was two clocks, when the major question you have with cancer is – HOW LONG?

Recovering from surgery

It was Wednesday the 24th October and I was now in POCCU (Post-Operative Critical Care Unit). At this time I felt extremely tired, and thought, what’s happening to me, but at the same time I felt very relaxed and had no pain whatsoever. Before the operation, I thought, I am going to feel like you know what, but this was a pleasant surprise.

Of course my first instinct then was to look down and have a look at what has been done. I saw this large plaster across my abdomen and two plastic bags on one each side of my navel, these of course were the drains helping me to recover. At the time I thought, I look like the roof of the Millennium Dome!

The following day Thursday, I was moved to HDU (High Dependency Unit) and the following morning (Friday) was asked if I wanted to get out of bed and sit in a chair.

This came as a great relief to be moving although I was totally dependent on the nurses to stop me from falling over. I sat in the chair and the nurse came with a bowl of water to soak my feet – this was heaven. Five minutes later the doctor came and said “you will have to get back into bed we are moving you to the general ward”.

Friday afternoon, and we are on the move again to the General Ward and now my recovery starts to improve at a steady pace and at last I start to feel that I am back in the land of living.

Going home

I was in hospital for 12 days and then I had recovered enough to go home. During my time at home I did decline for a while and lost my appetite, felt a little depressed as normal life started to return: probably the shock of what had happened starts to hit home but then I started to recover and each day got better than the last.

Taking part in a clinical trial

I returned to the hospital 10 days later and was asked to go on a clinical trial, which I accepted and at the time thought that it would help not only me but other people who find themselves in my situation in the months and years to come. The thought of going through chemotherapy was not something I looked forward to but hoped that this trial would in the long term provide more information for future cases.

Having returned home on 5 November, I started the chemotherapy in January 2008 and on my first visit to the hospital was guided through the process. They advised me of the possible side effects which would accompany the chemotherapy and that I would definitely suffer from some of them.

In my case I felt nausea for the full six months but I was never actually sick, my hair thinned out, my toilet habits changed and I began to feel very grumpy at almost everyone and everything that came near me. The hospital provided tablets for nausea and diarrhoea which I took as and when necessary. I can honestly say I don’t know whether the toilet trips were a result of the chemotherapy or actually caused by the operation, I personally think it was the operation because my existing plumbing, so to speak, had been altered and refitted.

It is now five years and one month from the operation day and this year I am gaining weight and feel in excellent health, I have control of the side effects as much as I can but these do not stop me from my life pattern in general. I have been on holiday to Italy, Spain and a Baltic Cruise so I intend to live life to the full.

I enjoy my volunteer work at the Hospital, and The Cancer Trials Unit in Liverpool. This illness has been a hiccup in my life but my determination to be positive and pass on my experience to others is not declining in any way.

I hope that my story inspires others.

First published November 2012

Update February 2014

Following my last update Nov/Dec 2012, I still suffer from my shivering and emesis attacks and extreme tiredness, although generally I am in OK health considering what I have had etc. I have had a few events happen last year to friends and family which knocked me back mentally. It would seem that I can handle reasonably well my problems but am affected by other peoples troubles.

It is now going towards six years and in that respect it has been great, although the consultants I talk to, keep reminding me of how lucky I have been. I try to carry on as best as possible and thank every day that I am still here.

Update August 2017

10 years of survival

Last friday 4th August at 1700 was the 10 year mark from me feeling ill on holiday in Spain and the start of the Cancer trip to follow. At the time, 10 years seemed to be unthinkable but here I am still here. I put a mention on Facebook to that effect, in the hope that it will inspire others to keep going.

I decided to stop the various committee work I was doing after 7/8 years at the Liverpool Cancer Trials Unit and various other places, to devote a bit of time to myself, my family and my hobby, which is photography.

I still suffer from the digestive/tiredness problems I have had since the Whipple but just get on with it and keep taking the numerous pills etc. on a daily basis.

As I approach 71 (1st Sept) the memories of the illness are still there but I think I cope with it better now, but I suppose they will never leave.