WHY OUR DAD?
4th March 2008
Our Dad was diagnosed with inoperable pancreatic cancer on 15th January 2008.
We have created this website to explain as much as possible about our Dad's illness and tell the story of his life. Friends, family, Gloucester All Blues Rugby Club, Gloucester Athletic Club & Epsilon (employer) have kindly set up a committee to raise money for treatment that we are hoping and praying that our Dad will be able to have, possibly in America. See RSNY link below
Up until October 2007 our Dad was playing rugby (even at the age of 52!) and running 8-10 miles on a Sunday morning. It all started from here when he was having some discomfort in his abdominal area that got worse over a few months. Our Dad is not a person to go to the doctors much, therefore, after several visits we were starting to get worried. Our Dad knew something was wrong with his body and requested a CT scan but this was declined on several occasions. Instead, he was sent home with several different types of painkillers.
Early hours of Boxing Day the pain was so bad that, Justin (son), had to rush him to A&E where he was given morphine and sent home. It took many further visits to A&E and 999 calls before anything was done. Our Dad was sent for an x-ray, ultrasound and endoscopy but none of these found a problem. Eventually a CT scan was done in January. A follow up appointment was made to see the consultant on 15th January where we were hit with the news. Jessica (daughter) attended the appointment with Dad and was taken to a staff room on ward 5 in Gloucester Royal Hospital. The consultant explained that it was cancer of the pancreas and it was inoperable. He also added that it was the worst possible news that he could tell us. They were then given a prescription for morphine and were told they may have to wait up to an hour for it at the hospital pharmacy. They were also told an appointment would be made to see an oncologist in Cheltenham for the following week or, if we were lucky, it could be on the Friday of that week. We were lucky, and got an appointment for the Friday. The constant waiting for appointments and information was one of the hardest things to deal with.
It was at our appointment on Friday that we told the severity of our Dad’s diagnosis. He was given a 9 month life expectancy. We requested a second opinion with regards to the possibility of surgery and an appointment was made for us to go to Birmingham. Even worse news was given at Birmingham. The life expectancy was reduced to 4-6 months and the tumour had doubled in size. However, this information was all taken from the same CT scan, as this was the only scan ever done.
How much devastating news can a person cope with???
We requested a biopsy as there was still a 5% chance that it could have been a less serious type of cancer. We were told at out first appointment in Cheltenham that there was no need for a biopsy as they were almost certain what it was and it could be risky. However, at our second appointment we were told that a biopsy will be arranged and that chemo would be delayed until the results were available. We had to wait 2 and a half weeks for the biopsy to be done, which took place in Birmingham. We knew that his only chance of longer survival was chemo and having only been given 4-6 months the delay was frustrating.
Unfortunately, the biopsy confirmed the type of cancer they first thought it was.
By chance, our aunt, Barbara, was talking to someone whose sister has the same cancer. This person was in contact with a doctor in New York that performs a treatment called Stereotactic Fractionated Body Radiosurgery. A link to this website is available www.RSNY.ORG.
Jessica researched this treatment, and the doctor, until there was no more information left to find. She has been in constant contact with this doctor by email and phone. His advice to us is to continue with the course of chemo and when we have the scans following it we will know for definite if he can help.
Our Dad will have 10 weeks of chemo with a 2 week rest period towards the end. However, his blood count was too low yesterday(3rd March 2008) so no chemo allowed. This will not put us back with the time scale though as this week is being used as a rest week. Jessica will keep the doctor in New York updated on a regular basis.
The chemo has worn our Dad down. He has gone from a fit, active man who loved being outdoors to barely being able to leave the house. On the first two occasions he was rushed back into hospital later in the evening as the pain was so bad. Last week he was slightly better as he had a large dose of steroids before the chemo was administered. On average he has to wait for up to 5 and a half hours on a Monday afternoon to have the 20 minute chemo treatment.
We have requested further scans to see what is going on inside our Dad’s body but the NHS have refused every time. We paid for a PET-CT scan ourselves, at a cost of £798.00, which was done recently. This was recommended by the doctor in New York, from the CT scan that he had looked at he was concerned about the liver. Unfortunately, this further scan showed multiple cancer spots on the liver and one very small cancer spot on the superclavicular node (which is basically by the neck).
When we queried this spread of the cancer with our Dad’s oncologist in Cheltenham we were told that he had noticed some spots on the liver but chose not to say anything as it would make no difference to the type of treatment. This should have been our decision.
We are sure that after reading all of this information you will be able to understand that our Dad’s life, his family and friends have been devastated by this shocking news. It is something that we will never know many answers to, but mainly why is it our Dad???
We would like to tell you a little about the type of person our Dad is and why we are trying so hard to raise money for him to have this treatment....
Go to Family to continue the story.