Check Yer Nuts! by Matt Wakefield

Fri, 22 Jan 2010 09:19:04 -0600

My name is Matt Wakefield. I'm 29, engaged to a beautiful lady and have two amazing twins, Sammy and Bethany. I also have one nut. Yep, I'm a Testicular Cancer Survivor.

I was diagnosed with cancer in June 2000, almost ten years ago. But that was only after ignoring a small pea-sized lump on my left testicle for nine months. I thought it would go away. I was also embarrassed about seeing the doctor. By the time I put went to the doctors it was way bigger, about the size of my middle finger and index finger put together.

Basically, my ignorance nearly cost me my life.

I had a left side orchidectomy and radiotherapy and nine years on I am now cured. I am even a daddy to 17 month old twins whom me and my partner had through IVF.

For almost 9 years I kept quiet about my one- ball status. Mostly out of the stigma of being seen as half a man, which I now know is utter crap. It wasn't till I joined Facebook and posted my story on Testicular Cancer pages I started feeling better about myself. I also met fellow survivors, Darren Couchman and Nick O'Hara Smith who are absolute legends where it comes to raising awareness of this man killer. In july last year I travelled down to London and met these legends face to face when we did the Testicle Tour of London. I also met 14 other Survivors so I no longer felt alone. We had a great time- its not often you get to carry round a huge fluffy testicle and telling men to check their balls!

In August last year I met Tony at the hotel where I work. He's a one baller like me so immediately we got on really well. He had Testicular Cancer at around the same time I did but he also left it till the last minute to have it diagnosed. The cancer came back as Lymphoma in his neck. He now has roughly two years.

If anything, this galvanized me. I was determined to make Testicular Cancer Awareness one of my highest priorities. With me and Tony it could easily be the other way round. It could even be easier to us have been both Survivors if only more men knew to check their balls on a regular basis.

On Saturday 23rd January we will be sitting in bath of nuts at Tescos in Dudley, near Birmingham, UK. For those outside the UK Tesco is similar to Walmart, Carrefour etc.

Why a bath of nuts? because the best time to check your nuts is in a warm bath. We hope to make a big noise and make people aware of this man killer and just how easy it is to check for the signs of it. We will also be collecting donations for Orchid Male Cancer to help fight male specific cancer, Testicular, Prostate and Penile.

Be sure to check out our page on Facebook, Be One Of The Lads, Check Your Nads where we will be posting many photos of this event.

Regards and have a good 'un,

Matt 'One Ball' Wakefield
Proud Fiance
Proud Daddy
Proud Testicular Cancer Survivor

“Self Advocacy” by Mike Tufo

Mon, 23 Nov 2009 18:44:55 -0600

"Self Advocacy" in "High Quality" Medical Institutions and the importance of making YOUR VOICE heard.
An Essay on medical "ignorance" when in a facility "unfamiliar" with YOUR medical history.

By Michael D. Tufo, R.T.(CT) ARRT
(Synovial Sarcoma/Lung Mets "Survivor" and Medical Imaging Professional.)

TO begin with: I have been in the field of Medical Imaging for well over 24 years. I began my career as an "X-Ray Tech" in 1986 and through the years have accelled in the industry as an Interventional Technologist, CAT Scan Technologist and have held various supervisory and administrative positions in all three disciplines, last of which was to assist with the building and function of one of only two "Coronary Diagnostic Imaging Centers" in the entire state of New Jersey. I mention this not to "blow my own horn" so to speak...but to establish to the reader that through the years I've had a vast amount of experience in MANY types of Medical Institutions and have gained so much additional "knowledge" about various aspects of the health care profession in general. So lets keep in mind, that besides my particular area of expertise...I'm just a "regular" guy who's "been around".

To keep my "cancer story" brief for this article I'll just say that I was diagnosed with Synovial Sarcoma in March'08 in my right thigh with lung metastasis that I am currently in the process of being treated for. Since my initial diagnosis, I have been under the care of the wonderful physicians and staff at Penn Hematology/Oncology at Pennsylvania Hospital in Philadelphia, Pennsylvania. These people KNOW my medical history, my tolerances, my mental capacity and emotional status, ect.. They KNOW my wife, Dianne and our 4 young boys. Simply put....THEY KNOW ME!

THE "ADVOCACY" STORY...

I have been in a "chemo hiatus" for about a month while awaiting for a change in "Trial Drugs" that started at the beginning of October to clear out my system. Over the course of the month I began to cough a little more and "run outta gas" a little bit quicker than normal. I just figured it was my body adjusting to being "chemo-free" for a month, but in the first week of November I became more tired and began seeing very minute streaks of blood when I'd cough...nothing alarming to me...I would just mention it to my Oncologist when I was scheduled to see him Nov.10th for my "Trial Interview"...but I never made it to that appointment. On Monday Nov.9th, I finally gave in to my wifes' frequent requests to go to the local ER to be checked out since my breathing had become substantially labored and I was coughing up clots of blood.

So at 1:00pm, I was in the Emergency Department of one of the better Hospitals in our area. At this particular hospital, I am formerly the Director of the CAT Scan Dept from a few years ago and always felt comfortable there, knowing the doctors and the staff and the over-all great reputation of the facility. The ER staff was great and treated me professionally and promptly. By 2:00pm I was severely short of breath and having chest pains. They performed a CT Angiogram of my chest to rule out a blood clot in the lungs (which there was none...) but the CT did show a Pleural Effusion (a collection of fluid in the chest cavity surrounding the lung...) of my left chest cavity that was compressing my left lung and it also showed the numerous lung lesions that we already knew about...nothing new there.

The ER doc explained what they found, said I would be seeing a Pulmonologist and Oncologist and they sent me up to my room on one of the general floors.

By 6:00PM Dianne and I were visited by the Pulmonologist who said he was going to keep me comfortable with Morphine, Dilauded, Percocet and would begin me on an antibiotic for the effussion...but he didn't think it would help...and maybe in a few days "tap" the effusion..."but that probably wouldn't do much either..."! At this point I became a little bit "concerned". I told Dianne not to worry too much..."I'll be o.k", and sent her home to be with our boys and relieve the baby-sitter. Later that evening, my former CT co-worker came by for a visit and asked if they "tapped me yet". When I told him what was happening I could tell by his look that something was wrong. "That needs to be tapped ASAP",was his reply. "You have a HUGE effusion"! After some more conversation, I thanked him for his advice and he left for the evening. My breathing became more and more labored, my pains were increasing. At 11:00PM, my "new" nurse came in to see me and seeing my distress called for another "Morphine" breathing treatment. I was somewhat worried when she didn't know how to work the dosage since "I've never had to do this at my other job", as she told me!

Then it dawned on me...Morphine/Dilauded/Percocet...They weren't treating my Pleural Effusion...THEY WERE MAKING ME COMFORTABLE!!!! THIS WAS PALLIATIVE CARE!!!

By 3:30 Tuesday AM, I was in severe respiratory distress. I was unable to breathe when lying down and the only way to breathe at all was to sit up over the bed with my arms hanging over the food table. I knew that if I fell asleep that I would NEVER wake up again and was crying both from pain an the fact that I may never see my wife and boys ever again. The nurse kept coming in to check on me and asked me on 2 separate occassions the status of my "Living Will" which REALLY scared me!

She was sorry and wished she could help me more and kept suggesting that I just try to sleep. Well, I managed to stay alive till daybreak when my new nurse came in for a visit. She reiterated how poorly I looked and gave me my usual breakfast of Dilauded/Percocet and set up another "Morphine Breathing Treatment". When she placed the "rebreather mask" over my face before turning it on...I knew this wasn't going to be a good experience. Those things NEED to be full-on...with 15 liters of oxygen per minute or it's the equivalent of placing a plastic bag over someone's head! I explained to her that something was wrong...I wasn't getting any air...and she just said "It's set right, don't worry about it...". I began my "breathing treatment" and as soon as she left the room...I turned the regulator up to where it SHOULD be and could feel the air rush in...she had it set to about a quarter of what it should have been! Shortly thereafter...a Respiratory Tech and her "student" came in to get my ABG's (Blood Gasses)...which I'd never had drawn before. She told me it was being done to determine the next course of treatment. If the labs were bad...I would be put on a Ventilator Machine! Student failed to stick me twice...The Tech then failed twice...and just happened to call out to a passing colleague "Ron" to see if he could "get me". Ron was a "gung-ho" military nurse and THANK GOD! Because he took one look at me and realized that something was very wrong! He checked the "rig" of my breathing mask and found that the nurse had hooked it to the wrong regulator on the wall! Instead of Oxygen...I was breathing REGULAR room air! He looked at his colleagues and stated, "THIS needs to be reported...". As soon as he made the proper adjustments I began to feel much better! I returned to a more coherent state and was much more alert. He was able to "get me" and my ABG's were sent off to the lab. Within minutes...a nursing supervisor had entered the room with my "nurse" and they quietly were discussing the situation and my nurse left...not to be seen for another hour or so...SHE WAS CLEARLY BANISHED FROM MY ROOM! She did however return later to happily tell me my ABG's were GREAT! I think was happy because SHE just dodged a very big bullet!

I called home to talk to the Boys before they left for school and reassure them I was o.k, and explained everything to Dianne who would get there as soon as she could.

By 9:00AM I was doing a little better and got a visit from the Pulmonologist. I told him I wanted a "tap" ASAP and he stated it would do no good since the thing in my lung was little fluid...it was a big tumor that had been there for a long time and we would just have to "wait and see...". WHAT???!!! I knew it was no tumor THAT big and told him I had just had a CT done less than a month prior that showed no mass like that. "Yes it did...they just didn't want to tell you". "BULLSH--!!!" was my reply and I explained to him that I was a CT Tech...That "I" had seen the images MYSELF and there was no mass like that on any images!!! I told him I wanted my lung tapped ASAP and I wanted the Interventional Radiology Department to do it if he wasn't going to. He came back in and said they were "too busy" in IR and it would have to wait. By this time...Dianne had arrived and was brought up to speed on what was happening. After further discussion, the Pulmonologist relented to our insistence to a "tap" and prepared for the procedure at the beside continuing to insist it would probably be a pointless effort. I sat over the edge of the bed, leaning over a table with Dianne holding my hand the whole time. As soon as the doctor placed the needle between my back ribs I IMMEDIATELY felt relief and began BREATHING BETTER!

With everything going on behind me I could easily tell by the looks on the faces in front of me, that there was A LOT of fluid coming out of my back. After about 10 minutes of draining, the doctor had removed 2 LITERS (Yes! A LARGE COKE BOTTLES' WORTH...) of fluid from my left lung cavity and I felt 200% better! I was breathing closer to normal, my pain had diminished dramatically and for the first time in many hours...I KNEW I WAS GOING TO BE OK!

I looked up at Dianne and said,"Get me the hell outta’ here"! No sooner had those words left my mouth...her cell phone rang. It was MY Oncology team from Penn Hospital returning HER call to get me transferred!!! GOD! THAT WOMAN IS AMAZING!!!She knew from the time she walked in that morning that it was in my best interest to get me to my oncology team at Penn.

Now, God Forbid...that "Dr. Pulmonologist" should admit he was wrong...Nope! He simply cleaned up when he was finished and said,"I hope your feeling better, take care and we'll have an Oncologist see you soon". I'd love to say at this point that all gets happy from here...BUT NOW IS WHEN THINGS GET REAL SCARY!

My appointed "house" physician comes in and explains to us that I will have to be put on a ventilator machine to re-inflate my lung as was suggested by the other physicians. I refused to be put on a "vent" unless my eyes were rolled up in my head and agreed to a "Bi-Pap" mask (which is a less invasive method to help re-inflate my lung). My "assigned" Oncologist came in @ noon Tuesday and began explaining to Dianne and I that he was going to have to place a chest tube in me, put me on a ventilator and move me to a private room so that family and friends could spend time with me while we "wait and see how things progress"! HE WAS UNDER THE SAME IMPRESSION THAT I WAS DYING AND HE WAS JUST GOING TO MAKE ME COMFORTABLE UNTIL THE END CAME! I felt as though I was in a glass jar and none of these doctors could hear me screaming at them that I was FAR from "N"-Stage! THIS WAS THE SCARIEST TIME FOR ME!

When I explained to the "oncologist" that I was awaiting transfer to Penn Hospital and would allow THEM to help me make these decisions...he just threw up his hands as if to "wave me off", made some under his breath comment about "DENIAL" and stormed out of the room.

My "new" nurse came in and I could tell by her demeanor and conversation that she was in total agreement with Dianne and me and assured us that nothing would be done until I was transferred and kept us posted on that progress. Dianne and I were comfortable enough now that the "Cavalry" was on it's way, so Dianne left to relieve the "sitter" and tend to our boys as she would meet me at Penn Hospital once I was transferred. I was comfortable enough to finally shut my eyes and "Cat-Nap". By 4:00PM Tuesday the Ambulance Squad came into my room to transfer me to Penn, Dianne was called and the NIGHTMARE was finally coming to an end. I was going to be treated by my "Friends". The ride to Penn was great! I was sitting up, joking with the ambulance crew and enjoying the attention of bright red lights and sirens!!!

And "flipping the bird" to cars behind me through the back window...GOD! I ALWAYS WANTED TO DO THAT!

I arrived at Penn Hospital at 5:30PM Tuesday and was directly taken to the ICU and immediately felt at ease knowing I was now in the hands of people who "knew" me. And the most beautiful sight was to see Dianne walking in about 5 minutes after I was situated. I could tell by her look that SHE was at ease also which took the weight of the world off my shoulders. An ICU "resident" physician had come to see me and reassured us that he was aware of our situation and that MY team had been in contact with him and a course of treatment was already planned and underway. Dianne and I were both much more relaxed and confident that EVERYTHING was going to be alright. They took a chest x-ray which confirmed that the fluid was pretty much all gone and that it was just a matter of allowing my lung to heal at that point. I was seen by MY Pulmonologists' partner who was happy with my results so far and the next morning I was seen by an oncologist from the group (as I was to find that my Oncologist was away on vacation but that he was aware of my situation and following my progress via telephone...which was MORE than I expected.). Wednesday AM I was visited by MY Oncology Nurse Practitioner, Letitia, whose visit alone was enough to re-assure me that I was back in good hands. I had a CT of my Chest/Abdomen and Pelvis that showed ALL clear other than the lung lesions and they continued the antibiotics and DECREASED my pain meds to normal...NOT PALLIATIVE!!!! My breathing continued to improve dramatically and on Friday November 13th I was discharged and being driven HOME by my lovely bride and 2 of my little boys! AND THAT IS THE HAPPY ENDING, except to add that on Sunday the 14th I was out in the backyard tossing a football to my 7 year old, Joseph! With my Oxygen tank in tow, of course.

Today, I am home on transitory Oxygen as I "mend up" and I await a visit with my oncologist this week to plan my next regimen of chemotherapy.

THE MORAL OF THIS STORY, DEAR FRIENDS...

I didn't write this to "scare" people with my horror story and I certainly am not doing this to "bash" a medical community that has been so wonderful to me throughout my career AND my illness. I felt the need to convey my story as a means to benefit my fellow "survivors" with an alert to them to ALWAYS be vigilant of the medical services being provided them by those "unfamiliar" with their medical history. People in our situation have been severely "compromised" by even the most benign mistakes made by competent, well meaning people in the medical field. We are not in a position to take for granted that those healthcare professionals treating us are "always" at the top of their game and therefore it is up to US to ensure that they are ALWAYS doing right by us and providing the best care possible. And we must make sure that our personal caregivers are aware of our wishes and feelings, our concerns and worries. It is up to US to tell them what is going on with our bodies so that they can step up and speak for us when we are unable to. My wife, Dianne played a huge part in saving my life last week. She took up the role of "advocate" for me when I was too weak to do so and expressed MY wishes to doctors who didn't know me when I was out of breath, unable to scream at them. I am truly blessed to have her in my corner. Our great realization after all the dust had settled was this:

WHAT WOULD HAVE HAPPENED TO ME IF WE DIDN'T HAVE THE MEDICAL BACKGROUNDS WE HAVE? What if I never saw my previous CT Scan of October? What if I didn't know how an Oxygen Re-Breather was suppose to work?

The answer is simple...I would probably have taken on blind faith the determinations of TWO medical "specialists" and I would currently be on a ventilator with a chest tube in me, in a private room, surrounded by family and friends waiting for me to die. PERIOD!

I cannot express to you all enough, after these events...BE YOUR OWN ADVOCATE AND APPOINT OTHERS TO ADVOCATE ON YOUR BEHALF FOR YOU IF YOU ARE UNABLE TO DO SO!!!

Some Pointers to help to that end:

1. ALWAYS ASK! What is that medication and it's dosage?, What does it do? How often should I be getting it? How long will I be on it? Who wrote the order for it?
I was almost given 2 medications that I didn't need because they were in my chart from a previous hospital stay a year prior! Don't be afraid to ask...it's their JOB to have answers for you! And it's good to TEST them to make sure THEY know.

2. TAKE NOTHING FOR GRANTED! Never assume that THEY are right. Ask the doctor to view test reports with you...IT'S YOUR RIGHT! And it's even MORE IMPORTANT when you have a COMMON LAST NAME. There have been diagnoses' made based on an incorrect report before and that information can be invaluable to you when in an unfamiliar facility. And YOUR CHART(Medical Record) is to be made available to you AT ANY TIME at YOUR request. Each facility has it's own protocol on allowing a patient to view their chart (i.e: can only be viewed with your physician present, ect...) but it is not a secret document...IT'S YOURS!

3. INQUIRE ABOUT EXPERIENCE! You can generally "sneak" this one in in general conversation, like..."So how long have you been in nursing"? Or "Do you like working here...How long have you been here"? "Where did you learn how to do that"? It's amazing how much you can get a feel for someone's skills simply by striking up a conversation! And many doctors LOVE talking about themselves...so it isn't hard to get them going! It's especially important, though, when a nurse/tech/doctor is beginning to set up for a treatment/procedure that you pay close attention to what they are doing. You needn't "Brow-beat" them...but at least let them know you're watching them by asking questions about what they're doing. And if you get the SLIGHTEST suspicion that they're not doing something appropriately or correctly, you can always politely ask them to have a colleague "double-check" it for YOU. Any medical professional confident in their skills will have NO problem with that...most professionals WELCOME those things, because you're helping them to do a good job. AND IF YOU CAN'T...INSTRUCT YOUR APPOINTED ADVOCATE TO DO SO.

4. USE YOUR PATIENT CARE REPRESENTATIVES/ADVOCATES!!!! Just about EVERY hospital I've ever heard of has a person designated by the Board of Directors of that facility to act as a Patient Advocate. This person is NOT an employee of the hospital (*in most cases*), but is hired by and answers directly to the Board. It is their JOB to address ANY patient concerns and problems and they are there for YOU! ***USE THEM***

And lastly...

I would LOVE to be able to say that I was the best, most infallible medical tech of all time...but that would be a lie. I've made a few of those benign mistakes in my career as well and was fortunate that nothing "tragic" ever came from them, I am though just as human as everyone else and I always learned from those events to better myself and share with my colleagues so as to benefit ALL my patients. Just like all the previously mentioned healthcare workers in this story...my #1 goal was ALWAYS..."DO NO HARM"! I don't feel there was ANY malice involved by any of these good hearted people, in fact, I feel they tried very hard in most cases to do their best. My point, however, is this: Good Hearted People can have an "off" day and we as patients MUST remain ever vigilant if we expect to remain as SURVIVORS! And with that said, I will leave you with a quote made to me by an old Radiologist, said to me as an X-Ray student as he was leaving the hospital for the last time into his retirement and his words have stayed with me ALL these years....
"Mike...This Institution has been here for a hundred years before you and it will be here for a hundred years after you...YOUR obligation and responsibility as a health care worker..is to ensure that YOUR era...was a GREAT one"!
--- Henry J. Powsner, M.D.

As Always...Be Good and God Bless,
Mike

The Story of Founding “Yes” by Executive Director: Suzanne Lindley

Thu, 29 Oct 2009 10:12:05 -0500

Cancer.

Stage IV colon cancer.

Eleven years ago these were words that filled my life with fear. They evoked thoughts of suffering. A bald head. Nausea. Fatigue. And even death.

In the years since those words and my life first intertwined, I've learned that other things cause greater fear, that suffering is not what I've done, that bald heads can be covered - or proudly displayed - that nausea can be prevented, that I've accomplished more things since cancer than before, and that cancer; no matter what stage, can be survived.

I didn't learn these things on my own. I've been surrounded by support almost from the beginning. Through the ACOR list-serv and friends traveling the same path as me, American Cancer Society (cancer.org), Colorectal Cancer Coalition (fightcolorectalcancer.org), Imerman Angels (imermanangels.org), LiveSTRONG (livestrong.org), National Coalition for Cancer Survivorship (canceradvocacy.org), Survivor Celebration (survivorcelebration.com), and now from Voices of Survivors (voicesofsurvivors.com) I've learned the importance of self-advocacy and of sharing experiences.

When I was first diagnosed, only one treatment existed for colon cancer and it had been around for forty-five years. Without guidance from an ACOR list-serv friend my journey would have ended there. Instead, I grabbed hold of that one and only treatment and was lucky to see the introduction of five more chemotherapies, to experience clinical trials, and procedures like Sir-spheres, cyberknife, and RFA along the way. Each new treatment has been a stepping stone to the next providing me with valuable time to reach milestones, make memories, and set new goals. I've become accustomed to telling a private story in very public places. I have climbed the Capitol steps, walked the halls of Congress, and have even testified. I've discussed the importance of NCI and NIH funding, the need for colorectal cancer screening, continued Medicare coverage for brachytherapy, care plans with the Comprehensive Cancer Care Improvement Act, and for access to "the right scan at the right time." My life has been touched by literally thousands of other survivors. We've battled in the cancer trenches together. We've shared life experiences, options, resources, and a whole lot of hope.

At one point, the tumors in my liver were growing out of control. My oncologist felt that we had run the gamut of options and suggested hospice. It was through a friend that I learned of Sir-spheres, was able to receive the treatment, and take a step back and move forward with more treatment. We wanted others to know that treatment options exist even after cancer has spread to the liver and that sometimes second, third, and fourth opinions are necessary. We started talking about how we could offer support. Then, while attending the Inaugural Livestrong Summit, I wrote my personal action plan. YES was created. The mission of YES (beatlivertumors.org) is to provide information, education, support, options, and hope for those affected by liver tumors. YES is a growing community of survivors and their family members, physicians, nurse professionals, and researchers who care and act on these issues. We want to arm everyone with the tools necessary to be a good advocate; for themselves and for others.

Because I've learned to self advocate I've lived as fully as possible and do so without regret. I've searched for other opinions and new treatments, shared my story with others and learned from those who have shared in return. I've vowed to never give up and never say never. Little things in life that would have once caused stress are now overlooked. Small triumphs are often celebrated as great victories. There is a miracle in every breath I take, magic in every moment I survive.

I watched eagerly last year as Lynn launched his first few survivor voices and I felt empowered. I knew immediately that he had touched on a missing piece of survivorship. Voices of Survivors gives all survivors and caregivers a forum to share hope, inspiration, and encouragement. I'm proud to be a part of that!

One voice can change the world. Voices of Survivors are not only changing the world, but creating hope around the globe. Share your voice today!

This is just the beginning........

“The Testicle Tour” by Nick O’Hara Smith

Thu, 15 Oct 2009 00:13:16 -0500

The “Testicle Tour” came to my attention early in 2009. I’d just joined Facebook to raise my profile. I lost both testicles 22 years ago and am on a mission. My sister says I am obsessed ! She may well be right.

Three months after I lost my testicles, I made a decision to abandon the life, and the lifestyle, that had taken me to the point of death. I’d lost my testicles and the Cancer was gone. Yet I’d just woken up, having attempted suicide the previous night. The reason was my hormones! You see, I’d been deprived of them for six weeks after my operation.

It had been a harrowing time, without the added problems, caused by persistent hot flashes, rage, depression, anxiety and uncontrolled emotions. Six weeks into my new “hormone regimen” of monthly injections, I’d attempted suicide. Knowing injections only kept me sane two weeks out of the four, tipped the balance between a desire to live, or not. I’d discussed it with my Endocrinologist, after the first shot had only been effective for two weeks. He’d told me he could not increase the injection frequency. I could not live a life knowing I would become mad half the time.

But I’d survived. Angry with my failure to not survive, and certain I wasn’t going to try again, I had to deal with survival. I had to find out what survival meant to me. I didn’t know, so I took it, one day at a time.

I realized there was only one way to deal with survival. I had to address the problems. I had to get my hormones right, deal with a major litigation and abandon the life I’d been leading.

I spent the first eight years in limbo as I strove to write . No matter what I tried, I could not make sense. Finally, in 1996, I started to make sense and published a website, named “The Making of a Eunuch” (TMOAE). It was first “survivor” website published on the Internet about Testicular Cancer. It told of my trials and tribulations since diagnosis. Later that year I’d joined the Testicular Cancer Resource Center as its Associate Editor.

I removed TMOAE in 2003, because I’d just authored “The Testosterone Deficiency Centre” website. I’d decided I had to focus on this issue, because it is much bigger, in terms of people affected, than most conditions, except Cancer. It has just been relaunched.
Philly Morris, the irreverent leader of the www.checkemlads.com website, which has done so much for Testicular Cancer awareness in the UK and its armed forces, is a good friend. He told Testicular Cancer survivor Darren Couchman, and co-originator of The Testicle Tour www.onelumportwo.org , of my existence and we made contact via Facebook.

The Testicle Tour originated in 2008 with a three week tour of the UK’s towns with genitalia connotations in their names. Knutsford, Prickwillow, you get the idea. They toured with giant, pink, fluffy balls attached to their backs and gained publicity for Testicular Cancer throughout the UK, with their media appearances. Awareness talks to schools and colleges followed, as Darren and his partner Richard P Miller took their humorous message to the streets. I loved the concept!

My time was my own. I’d just lost almost everything again. Another failed venture, this time in Thailand, had dumped me back in the UK, with little money, no desire to re-enter the 9-5 drudgery that had sustained me for so long and a desire to learn. My application to Bangor University was approved, so all I had to do was survive until late September, when my education would recommence, at the age of 57. I decided to help Darren and Richard with their tour, if they’d have me. I arranged to chat with Darren on the phone.

My sister Anne, sacrificed her space, to let me sleep on the couch in her living room. I obtained state benefits and looked for work. Luckily my job applications never got a response, so I could plan activities with Darren.

When we spoke on the phone, an immediate friendship was sparked, as so often happens when Testicular Cancer survivors meet. Darren told me his plan for a “Testicle Tour of London” on July 11th, Forty giant pink fluffy testicles would parade round the tourist areas of London, starting at the London Eye, naturally.

I’d recently joined the Lance Armstrong Foundation as a Community leader and spoke with Darren about my desire to get a bus sponsored to take a group of advocates to France to intercept the Tour de France on a number of stages.

I’d also applied to be a delegate at the LIveSTRONG Global Cancer Summit, which was to be held in Dublin in late August. If my application was successful, I told him, I wanted to take a bus to Ireland and intercept the Tour of Ireland too, prior to attending the Summit. Lance Armstrong was coming out of retirement, which made me determined to show my appreciation, and support, for his drive to eradicate Cancer across the world.

We agreed to get together when possible, and discussed ideas for other events. I mooted the idea of a Testicle Tour of Cambridge during the University’s May Balls (Prom) week. As I was due to move there and live in a tent for the summer, it would be no problem for either of us. Wimbledon was a definite, despite heavy doubt as to being let in with our “Testicles.” A synchronous transatlantic golf day, with American fundraising legend Bob Hammer in the USA , was also on the horizon. Then there were my plans to go “solo”.

The thought of attaching a pink fluffy testicle to my person at the age of 57, struck me as mildly undignified. However, I had to get over my nerves. I’d arranged a meeting with two old friends, who work for the Maxus Global Advertising Agency in London. Mark Robinson and Paul Capleton, who is currently going through Stage 4 Colon Cancer treatment, had agreed to help me find sponsors. It was my opportunity to travel into London by train, navigate the Underground then walk to the Maxus Offices. As I crossed Paddington station, I noticed camera flashes popping. I was dressed in a business suit, carrying the “testicle”, complete with a banner attached by my sister, proclaiming “The No Testicle Tour 2009”. I began to enjoy myself.
The sponsorship idea was shelved soon after and plans for the tour of France and Ireland with a bus abandoned. There was no available money. Anything I was going to do, I would have to pay for.

I set my first “awareness” date for May 9th, my birthday, at Lords Cricket Ground in Marylebone. England were playing the West Indies and it was a sell-out of 20,000 seats. For the uninitiated, Lords is the “cradle of cricket” steeped in tradition and stiff upper lips. I’d be lucky to get my “testicle” into the ground, due to the strict dress code. My plans were scuppered on the 8th of May when England beat the West Indies in three days, thus rendering the fourth day unnecessary.

I called my friend Al Sausse, who lives near the city of Durham and made plans to stay with him, so I could try and gain entry to the next game between England and the West Indies. It was not cheap and my funds were dwindling fast, but I went anyway. After a long discussions with Security and finally a talk with the man in charge of the ground, I was given permission to enter the ground. The day I spent there will live long in my memory as I delivered awareness whenever there was a break in play, which was often.

From there, the schedule unfolded perfectly. Darren and I did a Tour of Cambridge. This was followed by a visit to Wimbledon on men’s quarter finals day. We didn’t get in, as expected, but spent the afternoon delivering awareness to the thousands who were queuing for tickets in Wimbledon Park. The following week, I noticed a charity cricket game was being played nearby. The ad suggested Roger Daltry would be there in his guise of chair of the Teenage Cancer Trust. I wanted his signature, and got it, along with Bill Wyman’s and other celebs.

I headed to Lords again when the World 20/20 cricket championship was scheduled. I’d opted to attend a warm up day, where I was sure I’d stand the best chance of entry into the ground and doing some awareness amongst the crowd. The “stiff upper lips”, were relaxing the dress code, so I was optimistic as I headed to the ground.
I got in without a hitch!

Forty minutes later, now in my seat, I was asked to leave and talk to Security. I was told my “testicle” had to be confiscated. Despite my best argument, it was confiscated. I tried another route and thought I was getting somewhere, when the same bad-tempered, “jobsworth” arrived and scuppered that attempt. Disgusted, I claimed my testicle and left the ground to walk its perimeter, delivering awareness for the rest of the day.

I received my invitation to the Global Cancer Summit in disbelief. I really didn’t expect it.

I was determined to attend and equally determined to fund my attendance. However, my money was almost gone. Luckily, my ex-wife Sophie, decided she wanted to renovate and repair her thatched roofed home near Cambridge. We agreed a rate and I began work, renewing skills long forgotten from my days as a construction boss. I slept in my tent on the riverside in Cambridge next to our daughter Georgina’s boat. The challenge of earning enough money, to attend “Testicle Tours” and attend the Summit in August, ensured I worked hard until it was time to go to Ireland.

The Testicle Tour of London on July 11th was a fantastic success. Darren and his co-founder Richard P Miller brought 90 people together, for the 8 mile walk through the city. Forty of us carried “testicles” The tenor, Ezra Williams, a TC survivor, performed his own version of Nessun Dorma in Covent Garden, with us as his “choir”. Thousands of people were talked to, hundreds of cameras took photos , as we meandered through the streets of London.
The following week we did the Synchronous Golf day with Bob Hammer. It was another great day.

It was time for Ireland. I’d decided I would do a personal Tour of Dublin, intercept the cycling Tour of Ireland on its three stages, followed by the Summit. I had just about enough money. Thankful that I no longer drink booze, I knew I could do the trip on a shoestring.

I did what I set out to do, toured Dublin city centre with my testicle, drove to Blarney, from where I intercepted Stages 1 and 2 of the Tour of Ireland, managing to snap Lance as he rode by each time. The third day it was raining hard, so I headed to Dublin. One of the first people I met was Lynn Lane. He, Will Swetnam, Jonny Imerman, Joe Schneider, Crawford Inglis and Andy Anderson made sure I immediately felt a part of this amazing gathering.

After two days, I was happy with the whole event, but dissatisfied with myself. I had two unlikely goals. I wanted Lance Armstrong’s signature on my “testicle”. I intend to auction it. Secondly, I wanted my message to be heard as far and as wide as possible. Neither seemed likely as the final half day dawned. I’d reckoned without “Story Idol.”

The third day was for learning communication. A part of that was “Story Idol”, where we told a 1 minute story three times, to three different groups of four. At the end, we were asked to go to the person who’d told the most compelling story. As I rose, Tamika Felder looked at me and told me “Sit right there Mister”. I did and was quickly surrounded by people! The presenter asked me to go to the stage. I grabbed my testicle and got on stage. I was joined by five others. We told our stories in sequence and silence. At the end a vote was taken, unseen by the story tellers, our backs were to the audience. When we turned around, I was staggered to hear my story was the winner.

I’ve told this story before and been asked, “what did you say”. My reply was to tell them the first line. It began, “Twenty two years ago, I attempted suicide.”

I will forever be grateful to everyone for their support, particularly Darren Couchman, who let me steal his idea and take it all the way to the stage of the LiveSTRONG Global Cancer Summit. My mission to develop awareness of male Cancers and Testosterone deficiency is far from complete, but it received one hell of a boost this year.

I managed to ask Lance if he would sign my testicle, which he didn’t want to do, understandably perhaps. However, he told me I could tell everyone it is blessed. And so am I, I have survived!

“First Descents” by Brad Ludden

Tue, 9 Jun 2009 17:12:08 -0500

This is the first entry into the ‘Articles’ section of “Voices of Survivors”. I have asked Brad, the Founder of “First Descents”, to share his story of developing his organization and what makes it so successful for those ‘Survivors’ who take part in the challenge. So without further ado, I give you Brad Ludden.

Brad Ludden:

I have never had cancer but I always joke that my interaction with those who have has given me all of the good that comes with cancer without having to endure any of the bad. It doesn’t seem fair but then again, life usually isn’t.

My entire life has been fueled by a passion for adventure. It all started when my parents bought me my first kayak at age 9. By the time I was 12, I was traveling internationally and competing. Then life changed when I was 13 and my aunt was diagnosed with breast cancer. It was a hard time for all of us that ultimately encouraged my philanthropic mother to help others who were dealing with cancer so she started volunteering at a local pediatric oncology camp near our home in Montana. She asked if I wanted to join her. I took the only thing I thought I could contribute, my kayaks, and spent the day teaching kayaking the kids on a lake. It was a day that forever changed my life.

After traveling the world for the next three years and kayaking rivers in over 40 countries from Uganda to Sumatra, I realized how powerful the sport could be and that I was in a position to share it. So, at the age of 18 I started working on First Descents, a kayak camp free to young adults with cancer and in 2001, when I was 20, we held our first weeklong program in Colorado. This summer we will host 9 weeks of programming in 6 different states all for free.

I am still learning what it is that makes FD’s programs so successful. This is what I have so far: Kayaking is a scary sport. It’s a legitimate challenge. And that challenge is not made easier because someone had cancer. The river doesn’t judge. The rocks aren’t softer and the water isn’t warmer. It’s kayaking and it’s an accomplishment anyone should be proud of. Young adulthood is a challenging and transformative time in anyone’s life. The diagnosis of cancer at that time is particularly destructive and leaves emotional scarring and a sense of aloneness that needs to be addressed. By attending a week at FD participants find a new family. People who understand them, often times, more than most other people in their life. They choose to face the challenge of kayaking and by doing so they realize their strength because of their cancer. They take back control of their life and restore their identity. It is a choice to face a challenge, to heal emotionally.

I am always amazed at the courage of the survivors who attend our programs and honored to spend time on and off the water with them. We have seen hip disarticulations, people actively in treatment, physically weak, people with a loss of balance, sensitivity to cold (and yes, the water is cold), people who don’t know how to swim, people who are medically incurable and participants with a fear to live again after their diagnosis all making the scary choice to strap themselves into a kayak and face the river. By doing so they are shattering any illusion that cancer has weakened them physically or mentally. They are making a choice to take the control back and are proving they are not incurable because they have the power to heal from within. They are choosing to get back to where they were before their diagnosis and go beyond. It’s a display of strength, courage and survivorship that is humbling, inspiring and leaves all who attend with a perspective on life that only survivorship could.

From everything I have seen, survivorship is a choice, a conscious decision. Fighting the physical cancer is only half the battle. It’s up to the survivor to take on the challenge of healing from within and live the life they fought so hard for regardless of how long it is. One of our participants described his experience at FD like this. “The treatment the doctors gave me undoubtedly saved my life. First Descents taught me how to live that life.” His case was particularly poignant because he had lost his left leg below the knee. Before his diagnosis and amputation, he was an avid tennis player, water skier and all around athlete. Many of the sporting triumphs he enjoyed were taken with his leg. Kayaking put him back on an even playing field and his competitive spirit, which had been dormant, returned with a vengeance and a permanent smile was plastered to his face and still reappears anytime he says the words “First Descents”.

The program is unique in that we limit the participant numbers to 15 per week. This is for safety reasons as much as experiential preservation. On the water we have had up to a 2 to 1 staff to student ratio. We do this because we want to see each participant reach their goal for the week regardless of what that might be. For some, just getting into the kayak and doing a wet exit (flipping over and getting out) is their entire week. For others, it might be learning how to surf or roll. It’s up to us to see that they get there. I remember one participant who had incurable brain cancer. His cancer had caused severe loss of motor skills. He just wanted to get in a kayak and get out. He did. He spent the rest of the week smiling in the back of a raft. At the end of the week, we often take out at a 25 foot tall bridge over the river. Many people choose to jump off. It’s a “rights of passage” for some and often a final feather in the cap. That particular week, he climbed from the raft to the top of the bridge. I remember standing there asking, “Are you sure you want to do this?” His only response, “Yes. Very sure.” We all held our breath as he stood there looking down and then without warning stepped off. He surfaced seconds later a man with renewed strength and control. That night around the campfire he told us “In two years of brain cancer support groups I haven’t received the type of support I have in 1 week at First Descents.” He chose to challenge himself to live beyond his cancer and through that challenge he found support.

Each participant comes to FD searching for their own answers and most find them. That said, as someone who hasn’t had cancer, I too find answers to my own life and a perspective that helps me live each day differently. Better. Not a day goes by that I’m not grateful to have had the privilege of interacting with survivors. Their strength gives me strength and through the river we ALL realize that there is nothing we CAN’T do. The end of each week marks the beginning of a new life for all of us. It is one week forever.

“First Descents” Website