The person to act as my personal cancer bouncer was the head of radio oncology at St Bartholomew’s Hospital in London. I had scans on the Monday and by Friday 19 December I was in front of Dr Amen Sibtain. I had two tumours: one, 3.5 centimetres across – golf-ball size – was the primary, located in the base of my tongue; and the other, 2.5 centimetres across, was a secondary tumour in the lymph node adjacent to the primary.
The rotten smell from my throat was necrotic cancer cells draining from the lymph node. Nice.
Cancers are staged according to their size and spread. Stage 1 means the cancer is small and contained; stage 2 is slightly larger but hasn’t spread; stage 3 has spread a bit; and stage 4 means the cancer has spread further through the body.
In addition, each tumour has unique characteristics, and cells are broadly grouped as: well differentiated, moderately differentiated and poorly differentiated. Translation: well stuck together – easier to kill; moderately stuck – might go a-wandering; poorly stuck together – aggressive mavericks on a mission to wreak havoc.
Typically, 80 per cent of this type of cancer was moderately differentiated, and mine was no different. From the moment Amen spoke, softly and gently, I believed I would be cured.
At first I felt sorry for Amen. What an awful task to tell people such bad news and sometimes watch them die. As we progressed through the treatment I realised that he relished his job, and I began to speculate a bit more about what drives oncologists.
‘You’re a bit like a cross between a sniper and Sherlock Holmes,’ I suggested. He grinned. He was also a rock fan. Not till he cured me did he confess that it was Rush, not Iron Maiden, that floated his boat.
‘Do you smoke?’ he asked.
‘No. Why? How much difference does that make?’
‘I’m 20 per cent more likely to get rid of it, and it’s 20 per cent less likely to come back.’
My treatment would start on 5 January. Before that was a trip to the dentist, as there was a chance I would have to have my teeth removed. Radiation and the lower jaw are not happy bedfellows. The bone is permanently affected, whereas the soft tissue can by and large heal itself over time.
The upshot was that if any of my teeth required work or were likely to have to be removed in the future, the procedure would take place immediately.
I could not begin radiation treatment until all the healing had taken place. My salivary glands were also liable to be put out of action by the radiation, though thanks to new technology it was possible that I would get most of the functionality back. Saliva is also, of course, extremely protective for teeth.
I had recently lost a molar in the middle of the tour. A root canal had cracked, and I spent two weeks in pain as the antibiotics slowly failed and extraction was the only option. Standing at the back was one solitary molar that looked like the rock at Masada.
‘Were you considering an implant?’ asked my dentist.
‘Well, I had considered it. Why?’
‘Well, we would have to do it and wait until it had healed before . . .’
‘You mean delay the treatment?’
‘Yes.’
‘If I don’t have an implant will the teeth either side look like the Leaning Tower of Pisa?’
She laughed. ‘No, it doesn’t work like that.’
‘In which case, let’s get on with it and get stuck into the cancer.’
Back to see Amen, I asked a few more questions. Actually, a lot of questions. Like was it an HPV cancer?
‘Well, let’s wait for all the results.’
Given a green light by the oncology dentist, I went for another scan. This time I was strapped on a gurney and a thermoplastic head and neck mould was created, which would be my home for every radiation treatment.
The only tattoo I possess looks like a small biro spot on my sternum. The nurses made it so they could align my body to within fractions of a millimetre on the radiation machinery.
Amen was playing a video game with my 3-D head, shooting radiation pulses at different angles and intensities to kill the tumours, and also to irradiate any other sites that might have been subtly infiltrated.
He warned me that I would lose a lot of weight, and that I would be very tired towards the end of the treatment and my immune system would be fried.
‘I could pop a feeding tube in before Christmas.’
‘You mean cut a hole in me?’
‘Yes. It’s very simple. Most people can’t feed themselves in the latter stages and it’s very important you keep up nutrition.’
‘You’re not cutting a hole in me. I will feed myself. If I can’t, I’ll let you know and you can stick a tube up my nose.’
I was not going to turn into a hospital-bed dweller.
‘How long before I recover?’
Amen gave a good think to that one.
‘I had an RAF fighter pilot sitting where you are now, with exactly the same tumour. It was 12 months before he was fit, fat and healthy again.’
Twelve months? That was too long. I would be bored by then.
‘I’ll beat that,’ I declared.
I’d barely considered the question of whether I would sing again, which surprised me. I realised that I loved life above all else, and if singing was the price to pay then so be it. Amen was acutely aware of my predicament.
‘I have replanned your treatment twice now. There is a natural anatomical plane, which means I will miss your larynx with the radiation.’
Hit me with your best shot, as the song goes.
Of course, my whole existence was now digging up every scrap of information on radiation therapy, survival percentages and any alternative assistance that might help. The dental issue had freaked me out. I read up on hyperbaric oxygen therapy, which was possibly a way of mitigating the damage to the bone.
‘You’re worried about that tooth at the back, aren’t you?’ He smiled.
I nodded.
‘Well, don’t worry. I have bent the radiation beam around it to avoid damage.’
Dr Amen Sibtain – magician.
Christmas was coming. I was determined to eat and drink like a pig and put on as much weight as I could before 5 January, when I would start chemotherapy and radiation simultaneously for nine weeks.
I had to get my house in order because I wanted to come out the other side fighting. My aviation medicals in the UK and USA would be suspended as soon as I started treatment, and getting them back would be tough. Nevertheless, while I still had a medical, I renewed my 737 and 757 licences in the simulator on 3 and 4 January.
The Iron Maiden tour was to be postponed, and Rod wanted to tell the world that I had cancer after New Year.
‘You don’t want this to get out there uncontrolled. Someone is sure to recognise you going into treatment. Better to announce and control it. Also, we have to tell the promoters something.’
Fortunately the tour was largely arranged but not yet announced.
‘Tell them the reasons are too tumorous to mention,’ I muttered darkly. ‘Can we at least wait until I have finished my treatment?’
Reluctantly, he agreed.
Fighting cancer is a lonely business. I don’t mean this in a maudlin sense, but it is such an intensely personal condition that it’s hard for others to get close. The only people who can fight the tumour are you and the doctors and nurses supporting you.
The more research I did, the more I was convinced that any edge you could obtain was worth it to win the battle. I explored anti-tumour alternatives, and both grape-seed extract and a shiitake mushroom extract called AHCC showed promise in clinical trials. AHCC had also cleared HPV infections in six out of 12 women in a University of Texas study.
My chemotherapy drug was cisplatin, one of the first chemotherapy drugs. It shrinks tumours but is highly toxic to the rest of the body. I downloaded the government toxicology report. It contained the wonderfully obscure phrase ‘the method by which this is demonstrated has not yet been fully elucidated’.
In other words, no one yet knows why this drug works, but it does. The ‘platin’ bit of cisplatin refers to platinum, which I was shovelling into my cells. I had plenty of platinum albums and now I was turning into one.
I sat in hospital for six hours on a drip that squirted several litres of special saline into me, then had a bag of drugs to stop me throwing up and then the cisplatin itself. I felt high as a kite.
‘Nurse, what’s in that bag?’
‘Anti-sickness drugs.’
‘Any steroids?’
‘Oh, yes. Lots of steroids.’
The steroids were there to stop my kidneys going into shock when the platinum albums arrived, and I didn’t go home until I was pissing out platinum like a racehorse.
The first week of treatment was like the phoney war in the Second World War. Nothing much happened except I lost my sense of taste, a side-effect that I had been warned about. Hair loss was a similar possibility and, in protest at having cancer, I grew a bushy, nasty-looking beard.
Cisplatin can be toxic to hearing and also to mental functioning – so called ‘chemo brain’. I found a University of Toronto study experimenting with aspirin to alleviate the side-effects. In the UK the University of Southampton was continuing the trials. I discovered the dosages and self-medicated.
My chance of survival at diagnosis was, I learnt, 60 per cent. I wasn’t terribly happy about it, but it was 10 per cent better than 50/50. If, however, my tumour was associated with the human papillomavirus (HPV), my chance of survival leapt to 70 per cent, or possibly as much as 90 per cent as a fit non-smoker.
My Christmas present was a phone call from Doctor Sibtain on Christmas Eve. I was in the supermarket.
‘Good news about the bad news. It is a p16 tumour, which puts you in a whole different percentage for recovery.’
It was the best Christmas present short of being told it was all a terrible mistake.
Getting rid of cancer became a job like any other. Monday to Friday, at 11 a.m., I turned up at the hospital, and half an hour later I was on the street with two grays of radiation glowering away at my insides.
The routine was the same: turn up, say hello, take a gown, lie on the gurney, strapped down tight, barely able to breathe. The giant machine resembled a lathe that circled my head. Lying still, unable to move, an internal snapshot of where I was the previous day compared to where I was today. The metre-thick concrete doors slid shut. The noises made by the machine became familiar. When the beam was switched on, there were three pulses and I counted the seconds, 45, 45 then 30.
I was being bombarded by X-ray energy created by accelerating photons to the required speed. There was no radioactive substance in the machine. The beam was thus able to modulate the intensity of the radiation to different tissue around my head by varying the power to the photons.
Not only that, but the beam could change its shape because of a device called a collimator. Think of two sets of venetian blinds at 90 degrees to each other, which can open and shut independently. The tiny slats were less than the thickness of a pencil lead.
It was thus possible to deliver large doses to the tumours while shielding surrounding tissue, and smaller doses to other lymph nodes, all in the same 360-degree pattern.
I was receiving IMRT – intensity-modulated radiation therapy – and it was cutting-edge stuff. The nurse in charge of me, Mandy, told me to buy an electric razor and gave me a tub of cream for my neck. As the treatment progressed, the creams became different and the redness and radiation burns more evident.
At first I didn’t need painkillers, but gradually the radiation stripped my tongue of its mucous lining and my immune system fell on its face. Oral thrush appeared, a common infection, and the painkillers got stronger, until finally I was on oral morphine for the last 10 days or so.
Sleeping, eating, drinking and talking became very difficult. The pain from all the nerves in my tongue being exposed was intense. My throat was swollen. I devised a system to get to sleep for a couple of hours. I raided every local chemist for their oral topical anaesthetics and soaked kitchen roll in them and wrapped my rear teeth in the paper towel. My tongue stayed numb for just long enough to get to sleep. Bliss.
After the first two weeks, I was still pretending there was nothing wrong with me, and I would go to the pub, even though everything tasted like water. One day, my chest started to itch. I looked down.
It’s the bloody cat, I’d thought. But no, the hairs were too short. It was me. My beard was falling out. There is no protocol for having your face fall off in front of your drinking companions.
I went to the loo and plucked the underside of my chin. The hair simply fell off. I got as far as looking like James Mason playing Captain Nemo in 20,000 Leagues Under the Sea, and went back to the bar.
The next day, I went and had my radiation. Eating was still possible, so I went to a café and ordered breakfast. Scrambled eggs and smoked salmon. I could smell it, but I might as well have been eating frogspawn – it tasted of nothing.
Absentmindedly, I scratched my cheek. The opposite table regarded me with a look of horror. I looked down at my scrambled eggs; it was not black pepper, but beard bits that were tumbling from my face.
Back home, I adjusted further. Okay, not James Mason. I plucked out a nice d’Artagnan number.
Next day, that too fell out. I was left with a rather scratchy moustache and some rogue sideburns. In protest, I kept the moustache. Everyone I knew hated it, which made me more determined to keep it. I had cancer – what’s your excuse?
Gradually, the side-effects built up. A mouth ulcer at first, skin breaking out and weight loss. As it became difficult to feed myself, I was ever-grateful for being a singer. One of the first things that has to be in control is the tongue, and I could therefore flatten it, open my gullet and take a huge gulp of whatever I could manage before the pain kicked in.
By the last three weeks of treatment I was on liquids only, and could not speak, simply because moving my tongue was agony.
Custard saved my life. I mixed a pint of full-fat custard from the fridge with a medical milkshake, and could manage to get it down in three or four big gulps. The whole process still took almost 40 minutes, with the odd bestial noises in lieu of being able to scream ‘fucking hell, that hurts’.
At the beginning of treatment I had done 50 press-ups every day, plus long walks round Regent’s Park after radiation. I had books to read through, and I would sit on the steps of Marylebone Church where there was an outdoor coffee stand. I could smell it, but no taste.
Over the years my lack of taste in matters like clothing and, in particular, trousers has never bothered me. Lack of taste with food bothered me more than I expected. Biscuits tasted like sand, chocolate like plasticine. Only aromatic foods gave any hint of flavour, and that was just because of the smell.
Slowly, my energy levels dropped. One day, I went to the supermarket, only a few hundred yards. I shuffled around and got halfway back to the house before I realised I could go no further. This was beyond exhausted. It was as if every cell in the marrow of my bones was saying, ‘Lie down, right now. Give up.’
I sat on a low brick wall for a few minutes to recover. This was fatigue. I thought I had been tired in my life, but actually I’d not even been close.
Early on in treatment I planned my TV schedule – I would be watching a lot of it. Daytime TV was full of cheery adverts for cancer charities, complete with suffering victims asking for contributions. If that didn’t cheer me up, there was a string of life-insurance ads, plus several offering help with funeral costs.
I had calibrated my treatment and recovery to a repeat of the classic TV series The Avengers. At 8 p.m. every night, after a repeat of M*A*S*H, all of the Diana Rigg episodes were being shown, Monday to Friday.
My thirty-third and last radiation session was on 18 February. My last three-week chemo cycle was beginning on 16 February. The radiation would actually peak in my system 10 days after the last administrat
ion of it, and would then continue to work for at least two to three months afterwards, but at a declining rate.
So my peak radiation effect and peak chemo would be on 28 February. I calculated that this would be the episode when Diana Rigg handed over to Linda Thorson. On that day I would cease to watch The Avengers and I would restart the process of normality, even if I had to pretend.
Oral morphine was a terrific disappointment. I was at least expecting pink elephants or literary inspiration – even a desire to cut off my ear and paint scary pictures of daffodils. No such luck. It made you drowsy, didn’t seem to kill that much of the pain and, worst of all, removed the ability to have a poo.
A liquid diet of custard and milkshakes didn’t help, although I emptied sachets of oatmeal into the milk in an attempt to keep at least something regular. The anti-sickness meds plus morphine put paid to any hope of normal operation.
To add to my meds, I now had a delightful substance called Movicol. I regarded it with suspicion. I was on various anti-emetic pills, occasional steroids, oral morphine plus a most-impressive substance that created a lizard-like second skin around my neck to prevent the real skin splitting open. In addition I had a bag full of antibiotics and had to take my temperature constantly in case I should spontaneously combust.
I had lost over 20 pounds (nine kilos) in weight and my head felt like it was on fire. Seeing as I had received the equivalent of 11 lethal full-body radiation doses spread over 45 days – all of it in my head and neck region – it was not surprising.
My body was eating itself. The damage to my cells put the repair teams and my metabolism in hyperdrive. The damage to the tumour was, hopefully, permanent.
None of this helped my tummy troubles. In Monty Python’s Life of Brian, there is a girl named Incontinentia Buttocks. Chance would have been a fine thing.
My insomnia was ongoing. Two hours’ sleep, plus the pain of the tongue, and I was downstairs. The awful snoring that resulted from the treatment meant that staying up all night also did the rest of the world a favour.
What Does This Button Do? Page 31
