My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, June 21, 2007

Survivor Luncheon

Today I attended my 4th cancer survivor luncheon. It is hosted by a group practice of several oncologists at a very elegant hall, it is a yearly event. It has become over the last several years a sort of landmark in my survivor journey.

I received the first invitation to the luncheon only a few months after my MOAS surgery (cytoreduction surgery dubbed by an appendix cancer warrior as the "Mother Of All Surgeries" years ago). I'd just finished peritoneal chemotherapy and had only just begun my IV chemotherapy. I was still in my head a "cancer patient". I was a long way from being a cancer survivor. I didn't attend.

The next year I looked at the invitation for a long time trying to decide if I could attend the event, and I still couldn't. In part I still didn't feel that I'd "survived" cancer, I'd just finished chemotherapy. I'd also been focusing on moving past cancer. I didn't want to define myself by cancer. I didn't want to make cancer part of my social experience, maybe? I wanted to leave it all behind and return to my "normal" life (I was naive, I still believed you could go back to "normal" after cancer).

The third year I was invited I attended, alone. I didn't invite a guest as I wanted to be able to duck out if I felt uncomfortable. As it turned out, I had a great time and loved the other survivors I dined with.

The fourth year, I not only wanted to attend, but wanted to contribute. I offered to provide dinner music and to speak. I'd never played piano at an event like this one, attended by several hundred people at a very elegant hall, but hey, after a cancer battle, stage fright was the least of my worries. Many of my old fears had become insignificant in the face of a life and death battle. So, that year, I played my keyboard, spoke, and had a great time. This year and last, I've attended and also played dinner music for the event.

I love the survivor banquet now. I hope to attend for many more years. I now wouldn't leave the community of cancer survivors for anything. I love being with others who have survived cancer, they are in many cases my favorite people to be around. There's so much we can say to each other that we can't say to friends and family members. We share a history, we share a struggle, we share a profound and life changing experience. We understand each other.

I am proud now to be a part of the cancer survivor community.


Graham Davies said...

Carolyn, your website and blog are both informative and inspiring.

On 1 March 2006 a massive tumour was removed from my abdomen, along with half my bladder. Analysis after removal revealed that it was a urachal mucinous adenocarcinoma. I was given a poor prognosis - months rather than years - by one of the surgeons who operated on me. The initial effect that this had on me was devastating, but then I thought to myself, “I’ll fight this. I’ll prove you wrong.” Around three months after the operation I was told by a consultant oncologist that I had PMP, and he referred me to a consultant surgeon at one of the two specialist PMP clinics in the UK. Both the oncologist and the PMP specialist surgeon were quite upbeat compared to the surgeon who gave me the initial prognosis, and neither mentioned short-term survival. They just commented on how well I looked.

I had an MRI scan in June 2006 and a CT scan in November 2006. Both indicated that the PMP appeared to be inactive. There were small traces of jelly visible in the CT scan, but both my oncologist and my consultant surgeon agreed that no further treatment or surgery was necessary. A watch-and-wait policy is what they advised. My next CT scan is due in August 2007. Fingers crossed!

Right now, I feel really fit and well. My bladder has now expanded to near normal size again, and I don't have to get up in the night to empty it. I am extremely relieved and delighted to be able to live a normal life again, walking my dog, playing golf and swimming - and I enjoyed a skiing holiday in Austria in January this year. On the other hand, a good deal of what I read about PMP is that the long-term survival rate is poor. I still have that nagging feeling that I don't have long to go (I am 65 years of age) but then, as I am now a picture of good health, I just put it out of my mind and carry on as normal. My first granddaughter has just celebrated her third birthday, and my second granddaughter will soon be one year old. Just over a year ago I could not have envisaged seeing them grow up.

Graham Davies said...

I really appreciate your blog. It's a lonely life being a PMP sufferer. I have only met one person face-to-face who has had the Sugarbaker operation - which is performed at the North Hampshire Hospital that I now attend regularly for check-ups. He was having a routine CT scan at the same time as me and looked very well five years post-op. I have friends who have had more common forms of cancer - breast cancer, womb cancer, oesophageal cancer - and they were all very encouraging when I had days of sickness and depression immediately following my operation last year. But they find it difficult to understand why I am "different", why I am not undergoing chemotherapy or radiotherapy, for example. It's hard to explain what PMP is all about.

I think my urachal form of PMP is even rarer than appendix PMP. My consultant surgeon told me he hasn't seen such a case for four years. My oncologist told me he sees a PMP patient around once every three years.

The operation I had at Wexham Park Hospital was done by a urologist - one of the top surgeons in this specialism in the country. It was not the Sugarbaker op, as the precise nature of the tumour was not known until it was removed. The surgeon did a great job, cleaning up my abdomen very thoroughly, and thanks to him I still have a well-functioning bladder.

I spent nearly four weeks in Wexham Park Hospital. It wasn't easy. At first I was considerable pain, in spite of the epidural and the morphine. But the pain soon eased. Then I hiccuped and vomited for five days, I developed a lung infection, I became potassium-deficient. I was discharged 18 days post-op, but I went straight back into hospital on the following day as my bladder wasn't working and I had backflow to the kidneys - agonising! A new catheter was inserted and I was in hospital for another week. I battled all the time, walking around the ward as much as I could each day in order to regain my strength, and strolling with family and friends who visited me to the public canteen for a cup of real coffee and a doughnut instead of the weak brew and biscuits (cookies) supplied in the ward. My wound (9 inches long) healed very quickly. The doctors could see that I was getting bored and restless and one of them suggested that I should go home for one night. I did, complete with catheter and leg-bag, and my wife and I went for a meal and a couple of drinks in our local pub. On the following day I went back into hospital, my bladder was checked for leakages, the catheter was removed, and once it was evident that I could pee normally I was discharged.

One week later I was diagnosed with DVT, a clot in my upper thigh, which made walking very painful. So I had a course of injections of Fragmin into my belly, followed by oral doses of Warfarin. I still have the clot, but it's no longer a problem, and the last ultrasound scan I had shows that it appears to be slowly dispersing. I am still on 7mg of Warfarin per day. The next ultrasound scan to check the clot is due in December.

One month after final discharge from hospital I began to visit the local Holiday Inn swimming pool, initially swimming 5 lengths of the pool, then 10, then 20. Three months after discharge I celebrated by 64th birthday in Brussels. My wife and I treated ourselves to first-class travel by the Eurostar train and a five-star hotel. It was great to be able to enjoy once more the things that we love: travelling to interesting places, good food, good wine - and wonderful Belgian beer!

One thing I like about the UK is that we have a National Health Service. I am getting all this fantastic advice and treatment entirely free!