By Ian Gray, County Down Spectator and Ulster Standard
Updated March 12, 2004
It was the summer of 1999 and I was on holiday, staying with friends on the Mediterranean island of Mallorca. The weather was glorious, as one would expect, and several evenings, when there wasn't any football practice for the boys to attend, I went for a run with Kristian. Well OK! We started off together and that was the last time we were within shouting distance, and I wasn't the one in front! I hadn't run at all since I had a knee operation about five years previously, and was a little out of practice; and there was the small matter that Kristian had a 33-year advantage. I flatter myself by drawing attention to the inequality of the match, when the sad truth is that Kristian was more of an athlete than I ever was, even when I too was 16.
It was during the shower after the run that I first noticed that my right breast area was tender and sore. Quite naturally, I did nothing about it. I later managed to walk into a door, and throughout the autumn when the breast area got sore the door was blamed! In December I was advised to have my blood pressure properly checked by my doctor. When I was at the doctor's I mentioned the swelling and soreness in the breast area and that when I was regularly checking my testicles I noticed that my left testicle had changed, it had become hard. After an examination the doctor said he would refer me to a consultant at a major hospital.
On 11th January I saw the consultant, was thoroughly examined and sent for an ultrasound scan of the breast area. Never has conversation stopped so suddenly as when the nurse brought me into the waiting room of the Breast Clinic with about fifteen women waiting their turn! The outcome of the scan, according to the consultant, was that there was some thickening of the breast tissue, but this is something which is quite common in men in their fifties, and he would see me again in three months. Great, I was showing signs common in men in their fifties and it was only four months after my fiftieth birthday! Nothing quite like being made to feel older than you think you are!
Life continued as usual, every now and again my breast area would get sore, and at times it would noticeably swell, but after all the consultant said it was only something that was quite common in men in their fifties, you know, the polite way of saying "You're not as young as you think you are!" I continued going to the gym after work most days, and was in the best shape I had been in for at least the last twenty-five or thirty years. Life was good and the waistline was down two to thirty inches, the gym instructor put me through an assessment and I was as fit as the average twenty-five year old!
Then it happened, I left work on Friday, 24th March feeling a little stiff but put it down to sitting at the computer all day. Next day the stiffness had turned to pain and I reckoned I'd pulled a muscle, so it was just the jacuzzi and the steam room at the gym. On Sunday the pain was very definitely a pain. I phoned the emergency doctor and went round to see her clutching a urine sample. My pain was diagnosed as a kidney infection, and anti-biotics and painkillers were prescribed. Monday the pain was worse again, bad enough that I stayed off work. After two visits to my doctor I was sent to the hospital A&E (it would have taken weeks for an appointment). I was examined and x-rayed and had my painkillers changed to stronger ones. The doctor mentioned they thought they might have seen something on my x-ray and could I come back the next day for more x-rays. Well, of course I could, and I did. This time I could lie back and see the x-ray image on TV (I do have a damn fine looking spine!!!!!) especially when I was injected with an iodine dye. Again they said they could find nothing wrong, my kidneys were fine–no stones, no gravel, not even a hint of fine powder!
The situation continued for several weeks, I lived with the pain, swallowed the pain-killers every four hours; took a dose of pills at bedtime and was wakened four hours later by the pain, and still the doctors talked of sending me for ultrasound scans to see what was causing the problem.
Meanwhile, on 18th April I went back to hospital for the three-month follow-up with the consultant I saw in January. This time I was seen by his Registrar who immediately told me that the breast swelling and the dodgy testicle were clearly two parts of the same problem; they would take some blood and check my hormone levels, and they'd be in touch. (I was later told that instead of having a particular hormone level of 3 or 4, I had one in excess of 200,000!) A couple of weeks later I got a letter telling my one of my hormone levels was abnormal, there was absolutely no cause for concern and they would arrange for an ultrasound scan! (Where did I hear that before?)
By the end of April I was still waiting for an appointment when I noticed a lump on the side of my neck. A cyst on the thyroid the doctor said, from a distance of eight feet. "We'll have to get an ultrasound scan and a needle biopsy to see what it is exactly!" he added. I eventually discovered that if I waited for an appointment for an ultrasound scan it could be the end of August before I got one. I phoned my doctor and asked him to arrange for me to go private; I would gladly pay to get this matter sorted out. It really isn't much fun being a medical question mark!
It is amazing how money greases the workings of many a machine. I was seen by a consultant that afternoon and scanned from chin to knees six days later. Of course I had to beg from one doctor and swear at another to achieve this. I had been contacted by the hospital on Friday to see if they could schedule me for the scans on Monday. I asked if they could scan the neck lump as well–after all I was there, the machine was there and the doctor/consultant was there so why not do the lot. "Very sensible," said the hospital, "but could you bring us a request letter from your GP." I made the request at my GP's practice (my own GP wasn't available) and the senior partner in the practice dealt with the request and thought that I should be perfectly satisfied that I had been referred to a general clinic locally! It was quite clear that he was the Doctor and I was the patient and I had could do as I was told. I (not so politely) pointed out that perhaps he wasn't aware that ultrasound scans were no longer done at the local clinic, that it could be four months before I was likely to get an appointment and finally asked him calmly, and politely, "How the hell would you like to spend your summer months with a lump the size of a f*c*ing satsuma on the side of your neck?" Boy! He did such an about turn his head must have been spinning for a week! Of course they were terribly interested in sorting out my problem, etc., etc., in fact they were just as keen as I was, perhaps even more so, to get to the bottom of this, and he couldn't understand why this doctor, whoever he is, needs a letter, but he would write one to keep him happy and could I come to the surgery to collect it. Needless to say when I went round to get the letter he didn't come out and give it to me himself, he got his secretary to do it! What a chicken!
Anyway I had my scans on Monday and eight days later, on 16th May my consultant gave me the diagnosis. I must say he did it superbly, any doctor would be well advised to follow his example. He began by saying that I would be relieved to hear they had identified the problem, and I'd be happy to know that my condition was both treatable and curable. He quietly went on that when talking about my condition they had to use the word cancer–but since I was still hearing 'treatable and curable' the mention of cancer had none of the horror one might expect at being given such news. The Consultant went on that he had the operating theatre booked for the following afternoon and wanted me in hospital the next morning.
I suppose I'm very lucky. There I was, just past my fiftieth birthday and this was my first time in hospital as an in-patient! I was hardly settled in my hospital bed when I got the first request for final-year medical students to conduct an examination. Why not! It passes the time and it's nice to put something back into the system and we had a ball (oops!). With one group we had a competition, they each had to examine and then state which testicle they would remove and any who got it wrong were automatic failures! It's comforting to know that the new generation of doctors will be just fine–they all got it right.
In the early afternoon I had a chat with the surgeon, my friendly consultant, and declined the offer of having a false testicle implanted. With all the problems women have with breast implants I figured the fewer foreign bodies inside me the better! And, quite frankly I don't need a second bollock, even a 'pretend' one, to be a man! Since when was masculinity measured by the number of balls a man has?
The operation went smoothly... as far as I can tell; after all I was asleep at the time. I have a faint and distorted recollection of coming to in the Recovery Room and the next thing I was aware of was waking up back in the ward. Now, most normal people tend to be a bit on the sleepy side when they come round after an anaesthetic, but just to be awkwardly different I was hyperactive. I insisted on taking my dog Fido (my intravenous drip on its wheely stand) for walkies up and down the word. Some guys from work phoned to see how I was and were told I was up walking around the ward so they came up to see me... and I was still 'taking Fido for walkies'!!!!! I blame the anaesthetic–there was, and is, absolutely nothing wrong with the balance of my mind! Anyway after my visitors left the nurses coaxed me back to bed, my pulse rate was getting too high, and gave me a sleeping pill to keep me quiet?..and who could blame them!!!!!
The next day the white coats came round, inspected my operation scar and declared that it was healing nicely and I could go home. Before I could make good my escape there was the farewell blood test and that put paid to me going home for a while–my haemoglobin level was down to 5–it should have been between 13 and 18! Suddenly I was being quizzed as if national security was at stake and once I mentioned the black stools they were able to determine that there was internal bleeding. The blood transfusions began and I was back in theatre for the fibre-optic camera down the gullet job–there were two small stomach ulcers so obviously these were the culprits! It was blood transfusions and Lansoprazole for me! My blood levels climbed back to normal and I was allowed home on Saturday afternoon. It was good to be home again but as the following week progressed I felt progressively worse.
On Friday evening I collapsed and had to be rushed back into hospital by ambulance–my blood level was back down to 6!!!! I was so lucky that one of my mother's care workers, the wondeful Carol, was in the house at the time. As I lay crumpled on the floor–I managed to head-butt the wall as I fell–she wrapped me in a quilt and phoned the doctor. When he arrived he just wanted to get me back into bed but Carol was having none of it. Quite simply she bullied the man into sending me to hospital, which, it transpired, was the correct course of action. It is no exaggeration that her insistence that I should be in hospital saved my life. So it was back to blood transfusions and the every 20-minutes blood pressure tests, all through the night so the chances of getting any sleep were pretty much nil.
By the following Tuesday it was judged I was fit enough to be transferred to a specialist cancer unit in another hospital and only at this stage did I hear the word 'tumour' mentioned for the first time. The cancer had spread from the testicle and I had a large tumour the size of a grapefruit behind my abdomen, spots on my lungs and the infamous 'satsuma' on my neck!
On Wednesday 31st May my chemotherapy began and all seemed to go well. The ventflon was put into a vein in my arm, the bag was attached and the first of many drips began. First, there was twenty-four hours of saline hydration and then on Thursday they began to administer the hard stuff. it's an odd experience when chemo drugs are being administered, the nurses wear goggles and gloves and cover their bare arms with slip-on sleeves; the drugs arrive in black plastic bags with lots of 'Toxic' symbols... and they're going to pump this stuff into me!!!!! And of course you wonder when all those horror stories that you've heard will become part of your experience.
All went well until Thursday night–I had blood going in one arm and chemo going in the other (talk about having your hands full!) when the diahorrea began...and went on...and on...and on! The following day I was transferred to the Cancer Care Unit at Belfast City Hospital so I would be close to 24-hour-a-day operating theatres should I need it. That night, another massive bleed, or as I thought at the time another bout of that awful diahorrea! Ignorance really can be bliss–if I'd known it was bleeding I'd have been crapping myself!!!!
I was prepped for surgery and carted off to the theatre at 2am. Although I didn't know it at the time my life was in real danger. In spite of the constant transfusions I had bled over eight pints of blood and the staff were squeezing the transfusion bags to get it into me. I was sedated through the next two days, but I do remember a catheter being inserted up my penis–not the sort of event a guy could sleep through no matter how strong the sedation. Ye Gods, if ever there was an instrument of torture it's having a catheter inserted up your dick! The only thing that comes close is having it taken out again and then trying to pee!
Gradually I began to return to normality, I had slept through about two days and wakened up in a room all to myself, I had been moved out of the ward so I must have been judged a serious case. It was very pleasant being in a single room, a TV all to myself. If I couldn't sleep at 3 am I could watch TV without disturbing anyone else. Talk about luxury!!! The only drawback was that all I was allowed was sips of water to keep my mouth moist. It was a strict 'Nil by Mouth' regime for me! On Monday morning I was allowed up to have a shower–what luxury!!!! WOW!!!! it's the little things that make the most difference and stick in the mind most. When I was at my lowest on the Friday night it was the simplest of human contact that made the biggest impression. One of the nurses, a truly lovely lady called Linda, simply rubbed my back as I sat bleeding into the commode–the simplest of human contact and yet that is what I will remember for the rest of my life!
On Wednesday I had a ball! I had been asked if I would agree to be a human guinea pig in this year's final medical exams. At 8:45 am a porter arrived and I was wheeled in style to the eighth floor where I joined the other guinea pigs and spent the morning being examined by nervous students. "This gentleman has a lump on his neck. I'd like you to examine it, please." and the next set of nervously clammy hands would go to it. After lunch, which I didn't get–I was still on the sips of water–I had one student for about 40 minutes during which time he had to get my medical history. He would then be quizzed about my case by the examiners who had all my case notes in front of them. It was a good feeling to think that it was possible to put something back into the system, and maybe years hence some poor soul will have a lump on his neck and the doctor will remember his finals and order the necessary tests to determine whether or not it's Testicular Cancer and maybe save someone. I was really thrilled when the next day my afternoon student came in to the ward to thank me for being 'such a good patient' and to tell me he had passed. I now have a stake in a young doctor in one of Belfast's leading hospitals!
I still wasn't allowed to go home although my first round of chemotherapy was over. Had the hospital allowed me home and I had had another major bleed it would not have been possible to get me back to hospital in time to save my life–and home was only fifteen miles away! When faced with that kind of choice staying in hospital suddenly becomes quite an attractive proposition. Suddenly I couldn't think of anywhere else I'd like to be!
Of course, by now it was quite obvious that all the bleeding wasn't the result of two small stomach ulcers after all. It was the ?grapefruit? tumour behind my abdomen. As it grew it pressed on just about everything there is back there, hence the severe back pain, and then pressed on the bowel causing the bleeding. Once the chemo began it started to shrink and since it is sticky it pulled the bowel wall with it which, you guessed it, caused more bleeding. At one point there was a very real danger that the moment of separation (of tumour from bowel wall) could also be a moment of perforation in which case surgery would be an urgent imperative. Fortunately the hospital's response procedure never had to be put to the test!
At last, on Monday 12th June I made my escape! I was allowed to go home. Absolute bliss to be out of hospital, even though I was a bit unsteady to say the least. My weight had dropped from 165 lbs to 135 lbs. It was great to not only be free from the confines of hospital but I could feel myself getting stronger and there was none of the awful exhaustion that I had felt when the bleeding was going on. All too soon it was time to return to hospital for the second round of chemo, a routine that would become very familiar over the next two months.
On a chemo week it was into hospital on Tuesday morning, report to the Admissions Office and book in to the ward, see the doctors and go off for a chest x-ray. Back to the ward and get the intravenous ventflon inserted, and settle down to wait for a bed. This depended on when some of the guys on other regimes were finished receiving their treatment, but we could get things going by starting the saline hydration before getting settled in bed. The sooner the process began the earlier we could expect to get home of Friday.
The normal routine was:
By now it is afternoon or early evening on Friday and this round of treatment is complete and there's a dignified headlong dash for the door!!!! I should add that this sequence of treatment is a non-stop enterprise from Tuesday through to Friday. If the bags need changing at 3am then they get changed at 3 am. Once started the sequence doesn't stop until it's finished.
On the following two Thursdays I attended the Day Hospital for my Day 9 and Day 16 booster doses of Bleomycin; and the following Tuesday it was back into hospital for the next cycle.
On two occasions the blood test on the Day 16 visit to the Day Hospital showed that my white cell count was either low or tending towards low so I was given a course of Granocyte to kick the bone marrow into producing plenty of cells. It was a daily injection for three days. Usually it all went virtually unnoticed but Granocyte can produce quite severe pain often in the bone at the bottom of the spine, or in the breastbone.
Because of the severe bleeding I had suffered early on in the chemotherapy I was not allowed any anti-sickness drugs that contained steroids. Over the entire course of my chemo treatment I was extremely lucky in that I had practically none of the common side effects of nausea, vomiting or diahorrea. On one occasion I had a bout of vomiting, but this was put down to the joys of hospital cuisine rather than a reaction to the drugs; and on my fourth round I had a lousy four or five hours, about two hours of feeling very chilly and cold yet with a rising temperature, followed by a period of the hot sweats which lasted nearly two hours and that was more or less it. I was as washed out as a wet dishcloth at the end of it all but after a good night's sleep I was fine. it's difficult to be sure but it's at least possible that my lack of adverse side-effects may be connected with not getting the steroid anti-sickness drugs.
It's strange how suddenly life can change and instead of the normal being important you suddenly discover an obsession for numbers, the latest test results. Throughout the 'adventure' my alpha-fetoprotein (AFP) markers remained normal while my human chorionic gonadotropin (HCG) climbed to a high of 182,325. All summer it has been a consuming interest to see what the latest number is, and how much it has fallen since the last time.
My fourth round of chemo ended on 17th August when I went to the day hospital for my last booster dose of Bleomycin. I had a long chat with the doctor and he confirmed the 'gossip' we'd heard on the ward, that my case and another one were referred to the experts in the U S. Yip! All our case notes, x-rays and CT scan pictures were copied and sent off to colleagues in the U S and my case was reviewed and advised on by a Dr Lawrence Einhorn. WOW! While I was having my chemo in hospital I had been reading Lance Armstrong's book so I knew the significance of the name Einhorn. "Einhorn says" surely has the same kind of standing and authority as the Biblical phrase, "for the mouth of the Lord hath spoken it!"–there just isn't anyone more qualified, and he had reviewed and advised on my treatment! I was as good as cured there and then! And then the doctor gave me a wonderful illustration of what constitutes real fame–he added, "You know, he's the guy that treated Lance Armstrong!"
Not quite accurate, he advised rather than treated, but what the hell! I'm not about to give up the chance of starting a sentence, "Well, me and Lance?" Too bad (for me) that's about all we have in common, unless of course you want to get into membership of the 'One Short of a Pair' Club, the fact that I can ride a bike (although not so far, so fast or so successfully)!!!
It was a strange coincidence that I should discover that Dr Einhorn had reviewed and advised on my treatment because just days before I had posted a letter to him just to thank him for what he had done for TC guys in general and me in particular.
An important part of any medical story is the hospital and the hospital staff. This was my first experience of being a hospital patient and I have to say it didn't take very long to realise why nurses are often referred to as angels. One might expect a cancer ward to be a dull, gloomy place–far from it; Ward 4 South in the Belfast City Hospital was one of the happiest, most fun places that could be imagined. Sure there were the sombre moments but they didn't last long and were very right and proper when they did occur. We had all sorts of laughs and light relief... and a great deal of humour, a lot of which was as black as the ace of spades!
I'm now in the surveillance programme. I attend the day hospital once a week for a blood test and my HCG count continues to fall. The latest CT scan showed the 'grapefruit' behind my abdomen has shrunk to a table tennis ball, and some of the spots on my left lung have disappeared. The next question will be whether or not the tumour remains should be removed by surgery.
Life is good! Really good! And continues to get better! For others facing a diagnosis of Testicular Cancer, I would have to stress that the word 'cancer' doesn't mean a death sentence. Sure, no one would choose to have cancer or to go through chemotherapy, but now that the bad bits are behind me I find I'm glad I've had the experience. We go through life and so many things happen to 'the other guy'–well, this time it was my turn to be 'the other guy'. It's just a real bitch that it was Testicular Cancer that was on offer instead of a lottery win!!!! Ah well, just proves my luck is consistent!
In retrospect, undoubtedly the best thing I ever did was to go private to get a diagnosis. It was by far the best £267 (about $400) I have ever spent or am likely to spend in my life? it may well have saved my life! An overstretched and under-funded National Health Service cannot always deliver as quickly as we might like but we are so lucky to have it. When I was in hospital I read about Lance Armstrong having, at one point, to sit down to work out how much money he could raise by selling his house, his car and so on to pay for his treatment. There I was in bed getting tens of thousands of Pounds worth of treatment, and once it was over nobody was going to give me a demand for payment! I have paid my taxes and was getting the medical care I needed and it wouldn't cost me a penny. Now that's something to be thankful for!
By Ian Gray, County Down Spectator and Ulster Standard
Cancer sufferer Andy Anderson is to cycle the length of Britain to raise awareness of the disease.
Bangor man Andy [54], a curator of the Ulster Folk and Transport Museum, is to ride from John O'Groats to Land's End on May 7.
He hopes to cover the entire 872 miles in just 14 days.
Four years ago, Andy was diagnosed with testicular cancer which had spread into his lungs, abdomen and neck, putting him in a 'very seriously ill' category.
After surgery and months of recuperation he took up cycling on the advice of his doctors.
He was inspired by Lance Armstrong, who went on to win the Tour de France five times after treatment for the same type of cancer.
Although he cycled as a young boy, he had let his interest in the sport slide. Since his illness he has been training in the Elysium Gym in the Culloden Hotel-"It's too cold to train outside," he joked.
Andy has to cover more than 60 miles a day and some days must do 70, but he doesn't see himself as anyone special. "Essentially, I'm just a bloke on a bike," he said.
A member of the international group Cyclists Against Cancer, he will be joined by 11 others on his journey.
Other riders include Maureen Hurrell from Castledawson, whose sister is a breast cancer survivor, and Crawford Inglis from Glasgow, who twice survived non-Hodgkin's lymphoma.
It is estimated that one in three people will be diagnosed with a cancer at some point in their lives and Andy wishes to speak out against the dangers of complacency.
"Although my disease mostly affects men aged between 15 and 35," he said, "it can strike those older and even younger and sadly it seems to be on the rise."
"Men need to take on the responsibility for self-examination and if anything seems abnormal they must go to the doctor."
"Died of embarrassment" is not much of an epitaph.
