Archive for November, 2013
“The Monster Between My Legs”
I was showering when I noticed that my right testicle had grown in size and had become hard to the touch. It had always felt a little raw and tender when compared to the other one but I never really paid any attention to it. When I noticed the swelling, I went to see my doctor who told me that it could just be an infection (although he was worried when I told him that it did not feel painful). He gave me a course of antibiotics and told me that if the swelling did not recede after ten days I should go and see him.
After eight days there was no improvement so I decided not wait any longer. I went back to see my doctor who told me that I should take an ultrasound and he added that I should go straight away. That last statement took me aback but he still did not mention the ‘c’ word. I went to the clinic, dreading what the outcome will be. After the radiologist performed the ultrasound, he told me that most probably I have seminoma cancer and judging by the size of swelling it had been developing for about three months. He told me that I had to be operated to remove the testicle as soon as possible, within the following two weeks, the sooner the better. I was devastated. A million thoughts were running through my mind, but I was just too numb with shock to stay asking anything.
I went home to break the news to my wife (I had not mentioned anything to her, thinking that this was just something trivial). She went ballistic, most of all because I had never told her anything beforehand. After the first shock passed we tried to get stock of the situation.
We arranged a meeting with the surgeon who was going to perform the operation. He stayed explaining the procedure he was going to perform and then asked us if we had any questions. He was bombarded. Could I have transmitted cancer to my wife when we made love? No was the answer. Was the other testicle affected? No again, the scrotum has a flap, which separated one from the other. Was there any spread? That will be assessed after the operation and the biopsy made. What would be the recovery time? 2-3 weeks. Would the loss of a testicle affect things like voice, testosterone production? One testicle should cope. The questions just kept on coming and he just kept patiently answering. A date was set for the coming week.
It was the longest week of my life, my wife was a pillar of strength and supported me in every way possible. On the day I felt as if my guts were in knots. By the time we arrived to the clinic I was close to loosing my composure, the stress was just unbearable. Not just the thought of the operation was on my mind, but I was worried that the cancer could have spread and that my wife would not see me the same way after the operation. It was a very dark period in my life.
Once the operation was over and done with I came round in a bed with my wife by my side. The first news from the surgeon was positive; there did not seem to have been any spread, the cancer was confined to the testicle and did not break the surface or reach any vessels. For that at least I was thankful.
After I recovered from the operation I had to undergo scans to be sure that no further spread had occurred. The results were that I was clear. It was of little consolation however since I was feeling very depressed after what I went through. My wife was detrimental in helping me come out of it. Her motivation and support were invaluable, I will be in her debt forever.
About five months after the operation I started hearing a voice in my head telling me that I needed to do something about this disease. I just could not stand by and do nothing. In the end I started writing a book, it took me about two years to complete. It’s called ‘The Monster Between My Legs’ and is actually a novel with a humorous theme inspired by what I went through. All the proceeds are going to help local cancer foundations that are doing so much good work. It’s my way of trying to help get some awareness about testicular cancer and get some much-needed funds to these institutions.
#tscsm hashtag TeSticular Cancer Social Media
The use of hashtags continues to grow across many platforms and can even be funny and entertaining at times. However, the use of hashtags for medical conditions, such as testicular cancer, has not been uniformly developed and this provides an opportunity for improvement.
In order to be useful, hashtags should be unique, identifiable and short. Unfortunately, on platforms such as Twitter #testicularcancer is just too many characters and the use of #balls or #nuts is too generic to provide much usefulness for someone searching for testicular cancer information. As a matter of fact, if you are looking for cancer information on Twitter a search for #cancer will result in a plethora of topics and you will end up reading more posts about astrology than you will about clinical or support topics related to cancer.
Earlier this year, realizing these deficiencies, Dr. Matthew Katz proposed a hashtag folksonomy for cancer communities. After some collaboration and refinement they developed a systematic approach for site-specific cancers, based off the #bcsm hashtag that has been used for several years for breast cancer.
We have been communicating with Dr. Katz over the last few months and fully support his ontological system, which is also being accepted by other major institutions such as ASCO, MD Anderson and the American Urological Association. We hope that you will join us in starting to use #tscsm when making posts related to testicular cancer. The hashtag comes from testicular cancer social media (#tscsm) and will allow individuals to quickly locate information about testicular cancer without having to wade through the plethora of other posts that are unrelated.
The cancer tag ontology is also summarized on Symplur and will allow organizations and patients to connect based on the unique tags.
Thanks Dr. Katz, et al. for your hard work to make cancer information more accessible and useful to patients, clinicians and organizations on social media platforms.
#tscsm for Now,
Make Your Holiday Shopping Matter by Shopping for Good.
Well, welcome to Goodshop, an online shopping mall that puts an end to closing times and long lines. By following the links on this blog, every time you make a purchase the Testicular Cancer Society will receive a donation from the participating store. Just click on GoodShop once you reach the main page for onetime purchases or sign up and track your impact throughout the year.
Please help supporting us this Holiday Season and throughout the rest of the year by making your online purchases via GoodShop. The retailers even offer a ton of coupons to help you save a few dollars as well.
Thanks for Your Support,