Les Niewiara, age 43 when diagnosed, operable adenocarcinoma of the head of the pancreas Part 2

Les's experience of diagnosis, surgery and adjuvant chemotherapy

Two year on, and counting
(May 2006)

Every time that I have a meal, I have to take two pancreatic enzyme tablets to help with the absorption of food fats, as my pancreas no longer produces enough. The small tin pill case the children gave me for my birthday is my constant companion, and as such the thought of pancreatic cancer is never very far away. Other daily / hourly reminders come in the form of noises and rumblings from my stomach area, differing consistency of my bowel movements (based on malabsorption of fats), and having to juggle priorities based on a now finite amount of daily energy. Although physically fit and healthy, I constantly think about pancreatic cancer and it has taken the place of sex as my '7 second' male thought process.

More specific than this, for the last two years, every three / four months, life is punctured by my follow up visits to Hammersmith. Cancer marker blood tests and CT scans, are followed by an incredibly nervous and tense week, as Sue and I wait to go back and hear the words delivered by the oncologist which would result in lives being turned back into turmoil, or whether we have another few months of life ahead of us. I have stopped telling friends and colleagues that the results show that "I have 4 months to live", as they comment that this humour is 'too' black, but the reality is that this is how I view it.

Occasionally, I have reminders of my 26 days in hospital. Generally, it feels like some form of out of body experience, as I wonder whether it was really me who went through the whole traumatic experience, time certainly changes the perception of what the reality was. A couple of times in the last two years though, I have been starkly reminded of where I came from as I heard about the death of Said, in April 2005, and then towards the end of 2005, the death of David, my two fellow ward patients.

But these thoughts do not lead to any negativity, and I do not feel that pancreatic cancer is coming back, and this has been backed up by all of my positive test results to date. I still remain optimistic based on the statistical reality that someone has to survive pancreatic cancer, so why should it not be me? Unfortunately, these thoughts, like the pills, are my constant companions, and frustrate me greatly because they lead to a needlessly waste of energy, energy I feel I could use for more creative and useful purposes. The continuing thoughts about cancer work against my structured project based, and goal orientated approach to work and life. I cannot compartmentalise it, and I find this incredibly difficult.

Most people would not recognise this, as outwardly, life is pretty much the same as it was before. However, the new normality is vastly different from the old, as we find that all aspects of our lives are tinged with, and impacted by pancreatic cancer.

Sue has observed that an element of spontaneity has disappeared from our lives, and for us, the whole experience has made us less carefree. There have been some subtle changes in our relationship with some friends based on our recent experiences, experiences that most do not understand, and some do not wish to empathise with. After all, even for the best of friends, trying to empathise, understand and make allowances, are uncomfortable things to do, particularly when outwardly, everything seems back to normal.

Sue and I have continued to talk about things openly, however, we tend to talk and discuss at a factual level, rather than at an emotional level. Perhaps we are unsure as to where the latter route would take us, so we steer clear. For Rosa and Immi, as far as they are concerned, I have been perfectly well, although we did have a conversation recently where Rosa was asking about how ill I was, and for the first time, she appeared to comprehend how critical the situation had been.

At work, relationships with colleagues have gone back to exactly as they were before, and there is very little mention of what happened, and very little allowance made (although, there is an understanding that my work patterns are as 'flexible' as I need them to be). This lack of allowance causes me some issues, as on the one hand I do not want or expect allowances to be made, but on the other hand, I would like to feel that there is an understanding of how far I have come, and how much additional energy it takes to continually project this appearance of normality.

Apart from the enzyme tablets, the only other outward physical manifestation of my illness and treatment is my finite energy levels. Whereas before October 2003, I had boundless energy, and could survive with minimal sleep, since that time, I have needed much more sleep, and have noticed that if I have a number of long days in succession, then I really need to rest and recharge. In addition, despite being given flu jabs every year, I seem to attract cold / flu viruses which appear to hang on for weeks, and have an even greater effect on diminishing my energy, having a knock on effect that I feel mentally low and vulnerable, similar to when I was on chemotherapy, but not quite as extreme. Now this could be a function of simply getting older, however, it creates conflict in me, in that I do not want to use tiredness as an excuse for not 'getting on with it'.

Having said this, I would say that our home lives are currently even more hectic than before, partly because of the girls growing older, but also partly because I am busier at work and I tend to do more sport than ever before. I have continued playing squash, and 6-a-side football, and have even resurrected my 11-a-side career with a few games. I have also continued my involvement with managing Immi's girls' football team. Holidays are back to being active, and we have now resumed skiing, as getting back on the slopes was another of my key recovery milestones.

In addition to my work, sport and home activities, I have also actively embraced being part of the cancer community into which I was thrown. I have continued my involvement with Sue B and Pancreatic Cancer UK where I am now the patient representative of the relatively newly formed charity. Part of my role, is having an ongoing responsibility to raise awareness of pancreatic cancer by sharing my experiences to groups of health professionals, which has meant giving presentations to a conference for specialist nurses, as well as having a slot on a 'treating cancer patients' course at Hammersmith hospital.

Another part of the role requires having contact with, and sharing my experiences with, other individuals affected with pancreatic cancer that have contacted me (and Sue) directly via my case study, or have contacted Pancreatic Cancer UK in general, and have been referred on to me by Sue B. In some cases Sue and I have continued to be in touch after the immediate contact and questions. This is something which gives me a great deal of energy and satisfaction, and if through my experiences I can help one person negotiate their journey a little easier, then I feel as if I am contributing something worthwhile.

In April 2006, I continued my fundraising by running as part of a Pancreatic Cancer UK team in the Reading Half marathon where I completed the race in 1:59:16, just beating my sub two hour target. Sue (1:51;40), Rosa and Immi all took part in the events of the weekend as part of a team of 36, up from a team of 6 in 2004 and shows that the involvement in the charity is increasing quite substantially, all pulled together by the incredible work and dedication of Sue B who is lobbying, and working on committees so as to ensure that pancreatic cancer has a continuing presence and voice within cancer circles.

So what of Bike to the Future, and its ongoing legacy?

I look back and maintain that it one of the most important and significant things I have ever done in my life. This is a sentiment which was shared by all of us involved, and was a source of disquiet as all of the guys highlighted Bike to the Future' as the highlight of their year, much to the annoyance of most of the wives. Even for those not directly involved, for example, David, Lodzia's boyfriend, who felt that he had been privileged to be part of the whole event.

It has had a major impact in a number of different ways. In terms of fundraising, the final amount that was raised by the ten of us was £16,700, which was handed over to Sue B and Pancreatic Cancer UK. It has also encouraged a spate of other fundraising events throughout 2005 and into 2006 that are helping to further raise the profile of the charity.

It has also encouraged a whole group of people to cycle as part of their way of life. In September 2005, I completed the 'Coast to Coast - Bike to the Future 2005' ride organised this time by Pete Van Ruiten, a member of the 2004 team. A purely social event, which came as a direct result of the original bike ride, it crossed 143 miles from Whitehaven on the west coast to Tynemouth on the east coast, and climbed through the Lake District and over the Pennines. It included most of the riders from the original event, as well as Sue and Suzy (Andy's wife) - but all of that is another story. We are now planning a bike ride as part of our annual social calendar, and the ride certainly had an effect on the depth of in the majority of cases, already well established and long standing friendships.

Clearly, for me personally, it was a massive achievement and provided me with a mental focus just after my treatment had finished, and signified that there is life after cancer. Much of it was to do with a desire to prove to myself and others that I had beaten the cancer, and this is something which continues to drive me on a daily basis, whether it be through playing squash, or running the football team, or completing work projects.

Looking back, there are very few things that I would do differently if it were to all happen again. One of the only things might possibly be that I would elect to take some time off work immediately after finishing my chemotherapy. Working whilst in chemotherapy kept my mind active and occupied, and provided me with a focus away from cancer. Despite having a lot of time off from work, the only time off was when I was ill, I never had any real time to recover both mentally and physically.

So what lies in store? Who knows? If three years ago, someone had said that I would be diagnosed with pancreatic cancer, then I would not have believed them. But pancreatic cancer is now an inescapable part of me. I could chose to ignore it ever affected me and move on, but I cannot do this and I feel that this would not be helping to fight this disease. Up until now I appear to be one of the lucky ones who seem to be able to tell the tale about pancreatic cancer, and to try to make a difference. Unfortunately, I do not have the money to campaign full time, after all I still have a family and responsibilities to take care of, I do not have the backing to carry out whacky fundraising events, and I do not have a 'celebrity' public profile to fall back on. I am an ordinary person, carving out a new normality, and trying to do what I can to make my voice and that of Pancreatic Cancer UK heard. I will continue to so until the day I die, which I hope will be of glorious old age, but at the end of the day, that is beyond my control.

Bike to the Future 2004 was my first attempt at raising the volume, and it was a journey designed to draw a line under the first surgical journey, and all that that represented. I am proud of what I achieved, and with the support of my friends, my family and with my 'rock' Sue, I will be fighting and shouting for a long time to come.