Cancer Community – the Others ~ guest post

Today’s Guest Post comes from around Merseyside in the UK.  Steve Ward is a “Hodger” – a veteran of a group of survivors with Hodgkin’s Lymphoma, often tagged “the good cancer”.  Steve puts this tag in perspective here by showing us the dynamic and changing group of generally young persons that populate this amorphous but cohesive community.  He blogs at Wardy’s Big Bad Blog

3. The Others

I have tried to keep this blog positive. I have tried not to dwell on the “wrong side” of the percentages and not to worry about what happens if I am on that side. So far, I am not. So far I am in first line therapy and I have no reason whatsoever to believe that I will need any further treatment. But there are people who make up the 10%, people who don’t benefit from the fact that Hodgkin’s is the “Good” cancer.

I’m not trying to bring us all down here, but I want my friends who follow this blog to understand what I have faced and will continue to worry about facing and I want people who stumble across my ramblings to get a sense of perspective and a sense of understanding of what all of us “Hodge Warriors” have to go through.

Throughout my treatment I have visited the Lymphoma forums, a US support group. This site has been incredibly valuable as it has enabled me to talk to and read about hundreds of people going through exactly the same thing as me (Many of them with blogs too, who i shall link to on the right hand side of the screen if you want to read on). The blog represents the stats pretty well. Most people who pass through it post for a while, finish treatment and leave, putting the Lymphoma behind them. A very small population return when the Hodge does, posting about their 2nd line treatment and again many then leave the forum and the Lymphoma as a distant memory. Then there are the true warriors. A very small, very select group who have failed 2nd line treatment and find themselves bouncing around the country (the US) participating in clinical trials to stem the disease and managing the cancer as a chronic condition rather than a curable illness. These guys continue to post on the site, continue to help newcomers like myself and share their vast experience with us all. In some cases we see remarkable achievements. A girl called Bekah, who has been fighting this thing since 2006, has managed to reach a remission after 4 years of trying and many, many chemo’s. How happy we all for her! A guy called Chris, who is just coming towards the end of another trial as his disease has stopped responding, has been fighting since a long time ago but he is focused on the next trial he can get on, no worries.  Duane, who has a great blog, who has relapsed 3 times and is now in remission following an allogeneic transplant (donor). He is now somewhere around the world living it up!

But then there are the few who don’t make it. Recently there have been some bad times on the forum. Mike and Brian have succumbed to the disease after many years of fighting via either their treatment toxicities or the Lymphoma itself. Then over the last few days we have heard about Jennifer who has also passed away after a long fight. In my time on the forum I also remember Mario and Jeremey who had to give up the fight. They join many others who would have to disagree with the Dr who probably told them that “If you’re gonna get cancer, this is the one to get.”

Don’t take this the wrong way. i am not feeling sorry for myself or worrying or trying to make you all think “Wow, what must Steve be going through.” What I want to share is that I am not alone. There are other people in my boat, other people in a worse position. It’s NOT all about me. So if you have been following my blog thinking of me then great, but please think of everyone else too.  Think of the many who are cured and had to go through a rough patch, but remember the few who are still fighting or didn’t make it.

If you are a fellow Hodger who has come by my site via google then first of all, don’t worry, the cases above are few and far between and the stats you read about are true. The odds are highly stacked in our favour, you WILL beat this and you CAN get through the treatment, no matter how tough it looks. If you need support I advise you to join the forum. You will get more help and support than any hospital can provide and find many more answers too. We’re not medical professionals but we are a very opinionated group! Personally, I am a modest poster, but you may see me pop up from time to time.

~from: Wardy’s Big Bad Blog

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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