On a support group that Roni and I belong to, a friend from Australia posted a story about a friend he had that lost his fight with cancer. Some might find it discouraging, but I found it a great story of someone’s battle with cancer, and how he lived life to the fullest in the time he had. You'll need tissues.
Hello all
I wanted to share a story about my very good friend Mark Buchanan from Brisbane who very recently lost his fight with PMP.
It will be cathartic for me and I believe this is a story of hope rather than of failure and is a testament to a bloke who became a really good mate - through sharing something that neither of us wanted.
I first met Mark through the wonderful Brian's Story web site. I had posted to the guest book (and before this group it was the only way for us foreigners to keep abreast of what is happening in other parts of the world). I have also made some wonderful friends through Brian's Story, a number of whom have made their way to this group.
Mark had, like many of us just been diagnosed with this rare disease that he, and his doctors knew bugger all about. Because I was also in Australia, Mark e-mailed me and I provided what information I could about the disease and how it might be treated. I was about 6 months post surgery at that stage.
Unfortunately for Mark, he had been misdiagnosed for nearly 12 years. Mark was told repeatedly that he was suffering from irritable bowel syndrome, that it was stress related and that his problems might be at least partly psychosomatic. Mark's belly got bigger with the ascites, but (as in my case) it was put down to middle age spread. When PMP was finally diagnosed (as is often the case) Mark and his fantastic wife Jenny knew more about the disease than their doctor. I talked with Jenny on a number of occasions on the phone during these stages about what Mark could do.
Mark was a stubborn bastard (in Australia this is a big compliment so please don't get offended) who wanted to prove all the doctors wrong. They were willing to travel to Perth (equivalent to going from New York to LA) to have treatment with my doctor Stephen Archer if required. Their Brisbane oncologist even rang me directly to get information. I was having lunch with the staff for the Minister for Fisheries in a Japanese restaurant when the phone rang. I thought it was a gag at first, but we had a lesson in PMP 101 while I munched on sushi.
Mark started to run into difficulties with surgeons shying away from operating. The disease was very advanced and Mark was being written off by the medical fraternity. Needless to say Mark was very frustrated and angry with this treatment. He was making plans to come to Perth when he was put in touch with an oncologist in NSW who had some experience with the disease. Eventually, the Buchanans found Professor David Morris at St George hospital who agreed to undertake the necessary surgery. This was in late 2001. Most doctors had said that Mark wouldn't see 2002.
Mark had the usual clean out, but because the disease was so advanced, Mark lost a lot more than most of us. Mark jumped straight to an ileostomy bag as they took out so much of his intestine which was diseased. The prognosis was extremely poor and Mark knew it but he was determined to prove the doctors wrong and to do his bit for medical science.
Just before Mark's surgery we were both contacted by another person in Brisbane who was diagnosed with PMP. The disease was also pretty advanced and the prognosis was only average. This guy decided not to have surgery as he couldn't afford the time off work and his wife needed him to help out with her business. Last we heard from him a month later was that he was already on a morphine drip and it was only a few weeks later that he passed away. Both Mark and I felt sad but this guy made his choices and the consequences with PMP are pretty certain if it is not corrected....
Mark had worked in the Australian Air Force (and in the ain't it a small world theme one of his bosses was a University friend of mine) and had been exposed to beryllium and other chemicals while working on fighter jets. During my discussions with PMP Pals it is exposure to chemicals (especially agricultural ones) that is one of the few recurring factors with PMP (I worked in a brick factory with stuff like chromic acid and on fish hatcheries with lots of chemicals now considered strongly carcinogenic). Mark used his fight with the Air Force to muster his strength. We both knew he wasn't going to be able to win, but it kept a focus on staying as healthy as possible. In the end, the Air Force did make a payout out of court and were very supportive throughout Mark's ordeal, even though he had already left the Air Force when diagnosed.
Mark plateaued and I was lucky to be at a conference on the Gold Coast south of Brisbane and met up with Mark and his family for dinner. We shocked the entire Casino dining room by taking a photo of both of us showing off our scars. It might have affected their buffet sales but Mark kept boasting that he had had more staples and more drains than me so I challenged him. He won.
I also met Jenny and their daughter Kylie and son-in-law Nelson. Jenny was and still is, the rock upon which Mark based his fight. One of the most important factors in a successful fight against this disease is to have a strong support network. All the people who I know who have been fighting for a long time (and with remarkably good cheer), have had a loving, strong and supportive partner (or parents). This takes the pressure off those of us who in many ways have it easy. We do thank you, even if it isn't often enough with words.
Mark also had his biker mates and their annual trip to get away from it all. These guys even held a wake for Mark so that he could enjoy a big piss up (Aussie slang again) in his honour.
When you make up your mind that you are going to fight this thing as hard as you possibly can, you actually have very limited choices to make. It is our loved ones who have to worry about the 'what ifs' and who agonise over the test results. For those of us in the fight, it is all about going in the right direction and fighting like buggery.
Anyway, Mark lost weight and continued to suffer symptoms associated with PMP. There was more surgery and more complications but each and every time he met the challenges with grit and determination that defied medical opinion and acted as an inspiration to mere mortals like me. Jenny and I actually talked more because keeping Mark focussed was our major task and he continued to surprise us all with his strength, wicked humour and determination.
During this time Kylie announced that she was pregnant and would present Mark with his first grandchild. This became Mark's focus as he really wanted to see this baby. In about October 2003 Mark and Jenny decided to take their caravan down to Sydney for more tests with Professor Morris before the baby was due.
Things went from bad to worse and by the time they got close to Sydney, Mark was in a coma and rushed to hospital. Eventually they got Mark to ST George hospital with more complications than a Royal wedding and things were looking bad. Blood clots in the lungs and liver failure were the two biggest threats. I got the call from Jenny that things were barely hanging on and didn't look too good. Kylie hadn't yet had the baby and this was really stressing Mark out. I sent flowers with a message to tell him that he was a better fighter than Ali. They patched up his heart and liver and Mark went from orange to his more natural pallor.
Kylie gave birth to Olivia, a beautiful and extremely special baby and Mark was able to cuddle his granddaughter who immediately took to the old bastard. St George hospital wanted Mark to stay in palliative care, but determined Mark wanted to go home to Brisbane.
QANTAS arranged the flight but Jenny almost missed the plane due to a pair of surgical scissors which were in her handbag and some very unsympathetic security guards. Mark, drugged to the eyeballs, was apparently in the plane telling them they couldn't take off until Jenny got on.
Stick-like and full of drugs, Mark made it back to Brisbane. I was able to visit him with my family on Friday night 12 December as part of our Christmas east coast tour. We talked about important things and absolute rubbish. Mark was very weak, but Jenny, Kylie and Nelson were extremely strong. Olivia was an absolute dream and we cherish the photos of Mark and Olivia. Mark was weak and secondaries in his lungs were greatly affecting him. We gave each other a big hug when I said goodbye. Mark wanted me to stay as he promised to have better day the next day.
I got the phone message from Jenny on Sunday morning. We were driving up through some rainforest hills which were covered in beautiful mist. It was peaceful and the right place to hear about Mark's passing. I really do miss him.
I flew up for a wonderful funeral. All Mark's bikie mates were there as a guard of hour - wearing their special t-shirts and acting like well behaved people who refuse to believe what anybody - doctor, lawyer or minister told them without making sure it wasn't just plain bull - just like Mark lived his life.
It was sad to see someone who was so very brave and determined lose their fight against PMP. Selfishly, I feel lonely and humbled that I will be able to meet my future challenges with as much courage and strength as my mate Mark.
Mark knew he was going to die from the disease eventually. He didn't blame the doctors who didn't check well enough - that was looking backwards. Except for his fight with the Air Force which helped to give him strength, Mark refused to look back - only forward to see what was required to get over the next hurdle that was put in front of him. Mark didn't have much luck with his disease, but even though they took most of them out - he had more guts than anybody I know and was loved by many people.
Even though Jenny was completely busy with Mark, she managed to pull strings to get me to see Professor Morris in Sydney just before Christmas. I saw him the morning I flew to Brisbane for Mark's funeral. I took 'Prof' and his wonderful secretary Linda some flowers on behalf of Mark's family in thanks for all they had done and for agreeing to see me. My news was ok - the tumour appears to be back but isn't growing so no more surgery until it starts up again.
While this seems a very sad story. Mark and I have both had to confront our mortality in a way that neither of us asked for. When I asked him what it felt like to know how it was going to end (which in his case was pretty certain) he said that he was a lucky man. All the doctors told him he would be dead by 2002 so he had two whole years that were a bonus. He could live each day to the fullest and appreciate it for the blessing that it was. He did the things he wanted to do before he got sick - he even got to get drunk at his own wake. Mark believed that there are millions of people who are too busy getting by to actually live. They promise the wife and kids a trip away which always stays 'tomorrow'. Then they drop dead from a heart attack without any of those things having been done.
Mark has taught me that life is a precious gift which must be grasped by both hands and spent to get the best possible use from it. Mark, I love you man and really do miss you. I know that you will be there to greet me when my time comes.
To all the rest of you that PMP has touched in some way, please remember Mark Buchanan fondly, he is one of the good ones and let's do our best to prove the statistics are wrong and that human nature, love and support can make a real difference in beating this thing.
Frank P.
Australia
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