For any people reading this I should have pointed out in the first blog entry that the removal of my first testicle was in York under my private medical insurance. However once removed I entered back into the NHS system. Under York's care I had called with a few questions on my recovery and got answers within the day and everything seemed straight forward. The move to Leeds required a level of chasing, patience and more chasing. Something I couldn't get my head around at first. I wanted to drive the pace, but I had become a number and was now on a conveyor belt of a bureaucratic machine.
I had been told initially that there was a 95% plus survival rate with testicular cancer, which sounds great, until its with you. Then you realize in the dead of night that's a one in twenty chance of dying. With those odds on the national lottery Id be entering every week and be currently writing from my yacht in the Med. But these were in reverse and something I worried about. I worried a lot. My ever present and lovely partner worried, and she was a professional worrier when she needed to be. It didn't occur that she would be worrying, as I was the one with the 1/20 chance of dying and a lost testicle. In hindsight I regret now not seeing that she was worrying, but was getting a little self absorbed. All conversations revolved around me. I had nothing else to talk about as that's all I thought about.
When I say self absorbed, I was getting paranoid at every change in my body. My muscles were aching, I was sleeping many hours in the day and would have these strange warm glows for about 60 seconds, which came and went. Was that back ache, did I used to be able to do this or that, and what was that odd mark on my arm? All of it might be signs that the cancer had spread I thought.
My next stage was a trip to Leeds to get a CT scan undertaken and to see the doctor to get a recovery plan in place. I waited what seemed like weeks for the appointment. It was only a few days in reality. I had to chase and after some pestering I was given an extra slot in the CT scan departments day at 8am. I arrived in some specially bought grey jogging bottoms and grey hoodie. I'm normally a jeans and t-shirt kind of person. I don't dress particularly smart, but don't look like someone giving a DNA test on Jeremy Kyle. But given the size of the swelling from the scar and my colorfully bruised genital then Id had to buy something more comfortable to sit around in. Sitting down with jeans and a belt digging into my scar would have made me yelp. So here I was looking like a grey version of Bungle off of Rainbow. It wasn't my finest moment, and was also coupled with the fact that I kept crying. For the previous week since leaving hospital I had started to cry at anything. I wasn't a natural born crier in the past, but now a get well card or just a kind word would well me up.
The CT scan was different to what I had imagined. Imagine a large polo that ticked and you were passed through the middle of it repeatedly. A ladies voice every now and then would say, stop breathing - now breathe, at the appropriate time. I had imagined one of those big white washing machine type things you see on US medical programmes. This looked like a UK equivalent from the 80's, a big beige ticking polo. Expectations vs reality, at least it did its job! As part of the CT scan process you are hooked up to a drip which feeds some sort of liquid into your blood stream. I think the nurse said it was iodine. Which she told me I would feel flushed, then taste metal and finally finish off feeling like I had wet myself. Which indeed I did, and in this order. Being in head to toe grey joggers, sweating and feeling like I had pee'd was a new all time low. Then I realized my t-shirt had ridden up and my swollen belly was plainly visible to the CT scan crew standing behind the glass. Two personal best lows in one day.
I'm not good with needles sticking into my veins. I go all light headed and pass out if not horizontal. Its not the pain that bothers me that much, its the feeling of something hanging out of a vein. I always tell the nurse prior to them attempting to extract the blood, or insert some fluid into me. Some think I'm in some way slighting their ability to do their job and they say 'don't worry, Ill be quick'. I show them shortly afterwards what a 6 foot 3 unconscious Bungle character looks like after they have drawn out the first test tube.
Later in the day I had the appointment with the Doctor. But only after I'd seen a Key Worker in the hospital. Her role was to give me some information, but not enough to fully answer the questions. Maybe I was to full of questions? However she ticked the boxes on her introductory pack and we were back in the waiting room to sit with the other newbies to the clinic. It was a bumper crop of new entrants on the clinic so things were a bit manic it appeared. Then we got chance to see the Doctor. He was intense and explained everything in as much detail as we needed. He inspected my scar and prodded me around the usual places. So relaxed at this prodding exercise I jumped a little when his cold hand tapped by scrotum. I think I had drifted off to a happy place and was trying not to think of what was actually happening. His prognosis was that 98% of people with testicular cancer survived. That's now 1 in 50 who will not make it, a much better statistic than before on my own little gloom and doom scale. I explained my hot flushes and body aches and asked if this could be down to 'Andrew Ridgeley testicle' (see previous blog for explanation) not pulling his weight in the testosterone department. Nope came the reply, he has picked up his game and is now a full solo artist in his own right. The question was now if the cancer had spread to other parts of the body and given my sweats and back ache we needed to be prepared for a spread. The Doctors eyes widened at this point and I disappeared down a black hole in the soul with an audible gulp. We were now on weekly visits and each time they would take bloods and see what my tumour markers would be. Before the operation they were 1,600. Each week they are expected to halve. The target was 7, just seven. It seemed a long way down. Like an evil game of the TV show Pointless.
After a long day at Leeds we headed back home and waited. Waiting day after day for the next week to come was torture. More time to concentrate on small body changes and the game of second guessing a spreading cancer. In the meantime the York consultant wrote to me to say that my testosterone levels were very low. Contradicting the other advice. But the testosterone gel was working! I emailed the Key Worker to see if I should continue taking the gel given the conflicting advice. Which was not answered by the time the next appointment came around. Chase and chase again was my mini motto of the week.
A week past and we went back to see the Doctor in Leeds. My count was 269 on the bloods which was in line with the weekly half life of the tumour markers. He confirmed there was no spread of cancer that could be seen on the CT scan and we should continue to watch the blood count. Don't get hung up on the numbers he warned me, but how could I not? Seven was the target and still seemed miles away from this. What if I don't hit the number I inquired, hoping he would have some good news on this front. I was hoping he would say that I could scrape this test by getting a C grade like I had with my GCSEs. Chemotherapy was the response. My heart sank. I knew chemo wasn't a fun thing and had tried not to read up on it. Reading seemed to pollute the mind with ifs, buts and maybes. Maybe I should have read up on all of this prior to having the initial surgery. But I was in one step at a time mode. Just as we finished the session the subject of Ridgeley Testicle came up. The Doctor informed us that he would need some corrective action on him. What had not entered my head was the results from the biopsy (or nibble) was that he was pre-cancerous. Not a concern now but would have to be dealt with to stop it getting a second bout of cancer at a later stage. Two options were available, radiotherapy or removal. Whilst the loss of George Michael Testicle was bad enough, I had some solace in having one remaining. The scrotum had sinced de-swelled and things were looking tidy down below with my uniball scrotum. It had seemed like Ridgeley had taken centre stage and was nicely positioned in the middle. The option of removing Ridgeley was a shock as it meant so many things. Never having the chance to have biological children as well as carrying an empty scrotum. Both things I had never set out in life to have happen to me. Looking at the pro's and con's of the two treatments there was only one option for me and that was to sack Ridgeley from the band. The next option would be whether to have two implants popped into the scrotum as a form of wham tribute band.
Another week of waiting passes by and the results from the bloods are 117. I was still on course, but how long could I hold out on this path before my luck ran out. I was now at a low enough number where I would not see the Doctor each week instead just seeing the Key Worker to be given the number. However if it was bad news then Id revert and see the Doctor. More blood taken and more light headedness. At least I was now back in jeans and polo shirt and looked less likely to rob the medical store or appear on telly in some form or the other.
I suppose at this point I must point out that the news of the 117 gave me hope. Prior to this I was in a pit of blackness and had thought I was sure not to make it until Christmas. I was self absorbed and house bound. I spent my days wandering around the house, watching telly doing the washing up and thinking about what soup to have for lunch. I can recommend the Oxtail soup for those cold autumnal afternoons, just in case you had mistaken the website for a food one. I had only been off work a month and I hardly remembered ever going. The testosterone gel had helped no end by making me feel alert and alive, but there was still something missing in my brain. Something had changed and I was desperate to find out what it was.
Chasing, waiting and watching the numbers.
