Celebrity Ambassador - Stephen Campbell Moore
The Pituitary Foundation is delighted to announce Stephen Campbell-Moore as our new Ambassador.
Pituitary patient, Stephen, is an English actor who made his screen debut in Stephen Fry's Bright Young Things. Stephen created the role of Irwin in the original West End stage production of Alan Bennett's play The History Boys, and also played the character in the Broadway, Sydney, Wellington and Hong Kong productions and in the film version of the play. In 2004, he starred alongside Scarlett Johanssen in A Good Woman. He has also starred alongside Joely Richardson in the British television drama Wallis and Edward and had a recurring role in BBC series Ashes to Ashes, as Evan White. You may also recognise Stephen as the Prime Minister in Johnny English Reborn
Stephen is looking forward to supporting the charity and has already given his backing to our Brick by Brick campaign
Sweet for survivors to recall their toils
Even of pains a man has later joy,
Recalling all he suffered, all he wrought...
"There’s something to be said for telling your story after an ordeal, getting it out there - actors tell stories anyway, but I’m not naturally demonstrative outside of work and for me, it’s odd telling my own story rather than someone else’s.
I have read a few (stories) in this magazine and they have invariably been instructive, moving and heartfelt. My own condition, though serious to a point, is mild in comparison with most. I had a large benign tumour on my pituitary gland that was successfully removed by Michael Powell, in Queens Square London, two years ago. I am now on a low-ish prescription of hydrocortisone as my cortisol production is permanently reduced.
To all intents and purposes, everything else is now fine - the other hormones which had been seriously affected by the tumour whilst it was there, such as testosterone, have improved to normal levels and so far the tumour has shown no signs of re-growth. Nevertheless, it managed to turn my life upside down and inside out in a very short period of time and two years on, continues to be a daily struggle.
The day after my operation, laying upright in bed with ‘packing’ stuffed up my nose and a feeling that I’d survived the worst, I was told by a man in blue scrubs that ‘it’, the adenoma, was the size of a walnut and was a ‘bugger’ to get out. Fair enough. I still think that sounds like a bit over the top, that it was the size of a walnut, but that’s what he said, and it was an image that stuck. Walnuts have never tasted or looked the same since. Every time I have one - I think of that day and thank my lucky stars that life has slowly but surely improved since then.
In the two years preceding the operation, my world started changing dramatically, going from confident, lively and extroverted, to well… the complete opposite.
Most pituitary tumours are very slow growing and in my case, slow to identify. If anything, my own experience is an example of how, if local GPs and the public at large were more aware of the pituitary and its function and the symptoms of its consequent malfunction, a lot of suffering can be avoided before a tumour grows dangerously large, pressing against the optic nerve and causing irreparable damage. Being the most common brain tumour - the sort I had and its effects, would be worth GPs taking note - as in my case, my GP missed it and refused to consider the possibility of it being what it was.
What were the symptoms? Excruciating headaches - firstly few and far between, but gradually coming more often and with a greater force; arriving quickly and without warning. There was a constant feeling of high pressure behind my right eye, but when the headaches came it developed into a band of pain around my skull and into my neck, until my whole head felt like a thumping throbbing weight and each new wave of pain increased in intensity.
I went to my GP who suggested an eye check (pressure etc) which I did, but they couldn’t see anything wrong. Other early symptoms included night sweats - often around the back of the neck and head or sometimes I just woke up soaking wet!
Perhaps most persistent and worrying was the sense of bodily disorientation and worry that crept into my life incrementally over those two years. My cortisol levels were being knocked out by the tumour - but I just felt afraid.
My energy levels and forward drive became very low and I went from a thirty two year old actor who loved his life and work to someone who feared engagement with it. In the last few months before being diagnosed, it became hard to leave the house because of anxiety, to answer the telephone, make the bed - let alone perform on stage or spend a day on a film set and all the social interaction that naturally accompanies that profession.
In the last week of rehearsals for Arthur Millers “All My Sons”, a play that I was about to perform in the West End with David Suchet and Zoe Wannamaker, I reached the point of calling the producer; confessing that I could not face the paralysing terror of a public performance and would have to let everyone down and pull out. I rehearsed the conversation in my head for a whole weekend. I was so close to doing it - I even tested the waters with my agent, discussing what would happen in such a case - with the Theatre’s insurance etc.
Being the sole cause of a big West End production grinding to a halt and the subsequent unemployment of colleagues and the outrage of thousands of ticket holders was unimaginable... and yet the fear I was feeling was tipping the balance towards bowing out. Luckily, I spoke to my Dad on the phone - he couldn’t remove the fear but he managed to calm me a little, saying it would be better to try and fail than to give up altogether:
Him: “What’s the worse that could happen?”
Me: “I could die”
Him: “You’re not going to die. Trust me.”
I did go on. And once I’d done it once, I did it again and again and the fear was washed away by adrenaline and I settled into the routine. Being onstage, if anything, became a respite from the disorientation of daily life offstage.
Daily, from waking till bed, I was increasingly paralysed by a bodily sense of danger. I remember driving home one night and becoming aware that the movement of approaching headlights were causing me to feel terrified - if I was scared of moving lights then I was definitely losing it!
I started to find it very hard to concentrate and keep track of conversations and my short term memory was failing me - an actor’s worst nightmare.
However, I was also, for the most part trying to hide what was happening to me. Professionally, I had to, but to people close to me, it was very hard to communicate what was happening to me.
Sometimes I would try to explain to my closest friends but afraid I was going mad, erred on the side of understating my fears, and was always assured I ‘seemed’ fine and that it would pass. Looking back, I think the chemical imbalance that occurs and which affects us so strongly, is often viewed by the outside world as an emotional blip that will resolve itself by a change in the way you think rather than the possibility of it being hormonal.
Work situations were hardest, as it got to the point that learning lines was such a struggle and I would have to go over and over and over them all night before working the next day. I was sure that everyone could see how much I was struggling and that I’d be ‘found out’ - but somehow I got away with it.
In time my perception became almost permanently disassociated- I can only describe it as looking out through ever thickening windows onto a distant world that was in actuality, right in front of you. Familiar objects, places, people became strange to me - I was looking out but all ‘connection’ was becoming muffled, my instincts, which had always been trusted and clear, were blurred, and even my ability to ‘feel things’ emotionally and aesthetically was dulled somehow. A blue sky was no longer anything more than that - I could see it but no longer appreciate its beauty or derive pleasure from anything.
Emotionally, underneath this blanket of cloud, I always felt that the real ‘me’ was happy deep down - I have a close group of friends and family and an amazing girlfriend and many things to be very thankful for. But there were days where I was tearful and writhing in frustration at it never lifting up and away and being able to get back to myself.
Of course now those changes can be identified as the result of the fact that I was producing hardly any cortisol and a reduced level of testosterone, as the tumour was pushing my pituitary out of shape. Presumably, the space the tumour took up affected pressure in my head and that had an effect too. And as it got larger, the tumour started to press against the eye, causing headaches.
No doubt, the anxiety I felt was compounded by a prolonged period of losing the sense of me too. At the time I felt I was losing my mind - like I was on a very long, bad trip.
Why, with all these symptoms, was I so slow to identify the problem?
It was a combination of things. Firstly, my response to these emerging perceptions and feelings was to shake myself out of it - the disorientation, fear and fuzziness - by running, exercising, distracting my body from what it was telling me. The adrenaline always helped and seemed to temporarily replace what I was missing, but after a short period I’d feel sluggish again; my muscles becoming achy and tired.
With reading or trying to learn lines, I’d try harder and harder to concentrate, berating myself for not getting it under control - perhaps a very male reaction. But each day, I was feeling more and more “hung-over”, even though I wasn’t drinking. The healthier I ate and the more exercise I did - the worse I was becoming.
I went to my GP a number of times in those two years. He was a lovely, naturally sympathetic man, and I have no doubt a good doctor, now retired - but he failed to make the connection between the symptoms I was labouring under and the possibility that it might be a tumour. I suggested a brain scan. He did some basic tests but assured me it wasn’t a tumour.
Convinced it was a psychological issue, he asked me repeatedly about my personal life and my finances - saying that money was often the root cause of anxiety. I felt a little patronized but was in no fit state to press the case clearly enough for him to change his mind.
Though sympathetic and taking time to listen each time I came to the surgery, he was unwilling to pursue the possibility of it being physical rather than mental. If he had known me before, he may have been shocked by the change in my nature from relaxed and easy going to being so desperate, but we were newly acquainted and though I had no medical history of hypochondria or being a time waster - I can’t help thinking that maybe he had me down as a ‘highly strung artistic type’.
Eventually, exasperated by my repeated attempts of being granted a scan - he suggested I saw a therapist. I was surprised, but did so - anything to get right again.
After one session the therapist said that I was clearly anxious but perhaps rightly so, and that maybe I should get a private scan and take it to a neurologist if my GP was unwilling to pursue that line of enquiry.
When Michael Powell placed the disc of my scan into his computer and immediately identified the cause of all this suffering, as the image of my brain popped up on his screen, I was calm, collected and utterly relieved. My enemy was real now, identifiable and physical and I could start to tackle it with the help of this brilliant surgeon. I was no longer punching the air, I still had no control but at least I was moving in the right direction. A few weeks later I had the op
The weeks following, of course were all about recovery - taking it easy, sleeping a lot but getting on with things as normally as possible. Within three weeks I was filming a TV series called ‘Hunted’. I don’t regret it, but to be honest I wouldn’t recommend throwing yourself in the deep end either - it was too early to be back at work. I was playing a grief stricken widower which suited my world weary look though. Perfect!
The job lasted five months and rather than being a new man again, I was still forgetful, nervous and de-energised, though the headaches had gone - I still experienced disorientation and fuzziness.
On the upside, I never slept so well as in those few months, night times were a knockout: I clearly needed the rest - and used to half joke that my conscience had been cleared somehow during the operation. In the knowledge that someone had been rummaging around in my head, I really felt the extra space that had been created up there, and that things had not quite settled. It sounds silly, but I was acutely aware of pressure changing, as stuff was ‘clearing through’ - I heard some very unusual and unexpected popping and squealing sounds in my nasal cavity, like when the cabin pressure in a plane changes.
Emotionally, I was exhausted and upset that things had not become right again - that I was not back to my old self as I had hoped, and if anything, the future looked bleak and full of fear. I had countless nights writhing and in tears. I was mourning something I’d lost forever - as if I had to say goodbye to someone I’d known for years and get to know this slightly fuzzier, tired, less capable and less humorous man. And I wasn’t too keen on him at all - nice enough, but a bit pitiful and just a bit of a bore.
Five months after the op, blood tests showed improved hormone levels except for cortisol - I was prescribed 10mg per day of hydrocortisone, which was then upped to 15mg. It made a huge difference almost immediately in combating that bodily sense of fear I had been having for nearly three years.
Two years on, I have just finished a run in the West End, of ‘Chimerica’, - a play that took a lot of energy and love and I gave it all back with full force each night.
It tells the story of a photojournalist searching for the “tank man” - an unknown figure he had photographed twenty years before, on the day following the Tiananmen Square massacre. In the photograph he stands alone, in front of a tank convoy that was moving into the centre of city, halting them, and refusing to let them pass. David and Goliath; an iconic image of bravery in the face of a towering military might. It was a humbling story and a joy to be in.
During the run, we were able with the theatre owner’s permission, to use the theatre as a place to leaflet, raise awareness and collect money for the Pituitary Foundation.
My next step for myself is to try to understand now when I feel disorientated, detached and fuzzy; whether it is something I can overcome by my outlook, or medically, or both. I can’t help feeling that during the time I’ve suffered having a lack of cortisol, a real and other fear has crept in too and I’ve used my condition as an excuse and reference for everything I feel. Though it maybe true to an extent, it is also time to be a bit more brave, and in a different way, from now on.
I now look forward to supporting The Pituitary Foundation as much as I can and will be starting by making a monthly donation via the Brick by Brick campaign"