The one phrase that defines me more than any other is ‘Cancer SURVIVOR’! It’s that simple – but behind that simplicity lies a rather complicated story.
I was diagnosed with seriously-advanced Testicular Cancer on 16 May 2000, just 3.5 months short of my 51st birthday. My cancer had spread from the testicle – a grapefruit-sized tumour behind my abdomen, about 20 tumours in my lungs and a ‘golf-ball’ lump on the side of my neck. My betaHCG hormone was about 364,690 – a mere 364,687 higher than it should be, or over seven times higher than the level at which a good prognosis becomes seriously ‘iffy’!
First there was surgery to remove the cancerous testicle, then some heavy-duty chemotherapy – with a few ‘adventures’ along the way. When the chemo hit the ‘grapefruit’ massive internal bleeding ensued, 7- 8 pints the first night, 11-12 the next. I was looking Death straight in the face but I didn’t know it at the time.
I survived! Perhaps, “I survived” isn’t quite accurate. It implies survival was my achievement – it wasn’t. The real glory belongs to the scientists in Michigan who first produced Platinol and their colleagues in Cancer Research UK who perfected that drug to produce Cisplatin which changed the survival rate from 5% to 97+%; the clinical trials volunteers, the medical staff who treated me, the 80+ people who donated the blood transfusions I needed, the family, friends, colleagues and strangers who gave their support, encouragement and prayers for my benefit.
Most of these people will remain ‘anonymous’. One of the few who will not is Lance Armstrong – it was through a link on his website that I found The Testicular Cancer Resource Centre website, the best and most trust-worthy source of information on TC. Lance’s book, “It’s Not About The Bike” was just published and it went with me to hospital and was read and re-read during each cycle of chemo over the following three months.
I also owe Lance a debt of gratitude for his openness about his TC – during my third cycle of chemo, with my wheelie pole and bag of chemo drugs I shuffled painfully up the Ward to watch that day’s Tour de France programme. 12th of July 2000 was a Tour Rest Day and [UK]Channel 4 simply repeated their show of 10th of July – at the bottom of the Hautacam mountain in the Pyrenees, Lance and his main rivals were together. Suddenly Lance took off and [seemingly – it looked so easy on television] stormed up the mountain, taking about 6 minutes out of his rivals and the Yellow Jersey, which he held all the way to Paris and his second Tour victory. For someone with the same variety of TC as he had to sit and watch that day’s ride, knowing that just three and a half years previously he had been in exactly the same situation I was then in, was amazing medicine. While the chemo drugs were taking care of my body, Lance’s ride that day was powerful medicine for the soul. I didn’t shuffle painfully back to my bed – I glided effortlessly!
So, I survived – or “I was survived!” I’m still here because of the work, the efforts and the sacrifices of so many others. What now?
S – Survivor
I’m a Survivor, and I have to choose what to do about that. Put the whole experience behind me, move on and ‘forget’ about it. That might be valid if the achievement was mine and mine alone. As we know, none of us would survive a cancer experience all on our own, and with that simple fact comes an obligation. I can’t individually thank all the people responsible for my survival but, when and where the opportunity presents itself, I can pass on to others the help, encouragement and support I received.
U – Unique
Each of us is unique, a complex blend of genetics, upbringing and lifestyle choices, and we are going to react differently to a cancer diagnosis and to cancer treatments. We have to allow people their uniqueness, we cannot and should not ‘impose’ our experience on others. After I was diagnosed I heard more stories about what to expect. Baldness didn’t really bother me – I was well on the way already! Looking back though I wasted way too much energy wondering when I was going to get sick. I never did – no nausea, no vomiting and no diarrhoea. By all means alert people to the possibility of side-effects but emphasis the possibility.
R – Realism
Realism, or Honesty is vitally important. It’s CANCER – it’s not “a man’s problem”, “a lady’s problem” or any other silly euphemism so often used; and it most certainly is not something to be whispered. Talking openly and honestly about cancer gives ‘permission’ to others to do likewise. When I was diagnosed I phoned my boss with the news. She asked what I wanted her to say in work. “Just say that Andy has Testicular Cancer, he’ll have surgery tomorrow to remove the testicle and chemotherapy starts in two weeks.” Why get all prissy and secretive when the truth will eventually come out anyway? She did as I asked, and one unforeseen effect was that TC became an ‘acceptable’ topic of conversation at the guys’ lunch table. Some did research to know more and I later heard that several had discreetly visited their doctor for a check-up. Fortunately no medical issues were discovered but it could so easily have been a very different story. Just being open and honest can save lives!
V – Vocal
Don’t ever be afraid to talk about a cancer experience, when a situation presents itself – I once told my story, commenting that it could have been worse. I had two testicles; I could afford to lose one! The next day my listener learned he had a tumour in a kidney and he claims my throwaway comment is what got him through his ordeal. You never know when something you say will have a positive effect. There’s never too much encouragement!
I – Irreverence
OK, you have cancer! Not something you chose, but something you have to deal with. You’re in a serious situation but does that mean you have to lose your sense of fun? Surely not! Humour and Fun are wonderful tools! I was barely settled in hospital awaiting surgery when a Consultant came to ask if her final-year medical students could come and examine me. Sure! Why not! It helps pass the time and it’s nice to ‘give something back’. They came, examined the ‘golf ball’ and then one rather hesitantly asked if they could look ‘down below’. Again, why not, but they would do it on my terms! I explained I was about to have a testicle removed and it was rather important to me that the surgeon removed the correct one. A mistake would mean a second surgery and I’d become a eunuch! So I made each of them examine me and then I lined them up and asked each in turn which testicle they would remove. Lucky for them, luckier for their future patients, they all answered correctly. We had fun – but more seriously they hopefully learned something valuable; and if they are ever faced with a similar set of symptoms they’ll remember that ‘daft guy’ in hospital and come up with the correct diagnosis.
V – Volunteer
We all have skills which can be used in the battle with cancer, and volunteering can be wonderfully satisfying! I’ve stood on the street collecting for Cancer Research UK and doing that you get to meet some amazing people – the two young lads coming down the street that had me unconsciously tightening my grip on the money-box; and yet when they realised I was collecting for a cancer charity they fed handfuls of £1 coins into my box. It’s moving when people apologise they can’t give more, or thank you for what you’re doing. Occasionally you meet someone who has just been diagnosed, and they’re apprehensive, and you get the chance to reassure and encourage. There’s also the public speaking for CRUK – telling my story and linking it to the work of the charity. One of the best was talking to a room full of cancer researchers and starting off with “I’m really looking forward to the day you lot are out of a job!”
A – Advocate
Part of the ‘obligation of the cured’ is surely to advocate for others. It can be difficult at time, tiring and exhausting, and sometimes uncomfortable – but always worth the effort. At one point it took thirteen days for a blood profile result that clearly indicated cancer to get from the lab to the Consultant. I took the Hospital to task over this with the Health Authority. After nine exhausting months of investigations and argument, I did get the Hospital to revise their procedures – a small victory but one that might make a big difference to some future patient.
I’ve never been timid about expressing an opinion, I quite enjoy it – argument can be fun! By expressing my opinion I’ve ended up on the BBC national new channel arguing for better diagnosis services; on various radio shows talking about my cancer experience and encouraging men to self-examine and then to ‘have the balls’ to go see the doctor is something odd is found
L – Living STRONG
It may sound a little odd but I’m grateful to cancer. Because of my cancer experience I’ve had some wonderful opportunities I wouldn’t otherwise have had. I’ve had the privilege of meeting some truly amazing people and the good fortune to now call them ‘Friend’. All-in-all my cancer experience has so enriched my life – it taught me what is truly important, it gave me a matchless appreciation of life with all its complexities and absurdities. In short cancer gave me the opportunity to really live!
While I have no desire to repeat the experience, all in all I wouldn’t have missed it for the world!