It’s really quite surreal sometimes to think that 18 months previously I was fighting for my life. I feel so normal, but at the same time I know I have grown an incredible inner strength. Whatever day to day work and life pressures are thrown at me are nowhere near as desperate as how I felt back in February 2013…..and that is a liberating feeling.
I am back working 5 days a week and operating at full strength again…..able to cope with the multiple requests and pulls on my time. The emotional struggle I was grappling with a few months ago is fading, as many have told me it would, and I can look forward again to the future. The scars are hidden, which given my overall general hair loss is no mean feat! And people who meet me for the first time have no idea – I get a real kick from that! This year’s scan is key and if clear, I can really start to think I have come through the biggest fight of my life.
I don’t think as a family we are entirely back to normal just yet – My wife is exhausted and still “on alert” I would suggest, my mates still call me brainless and other such names but that’s absolutely fine with me – the fact is I am here to cop the stick and that is good enough for me. I am planning a fund raising hike up Kilimanjaro in December 2014 with my close school mates.
I’ve thought long and hard about what to call this story – the word “hope” sums up my overriding feeling when facing the fear that is a brain tumour. The other question is who I have written this for. There’s no doubt I have benefited enormously by putting my thoughts to paper – will I read it in years to come? I’m not sure. Part of me will want to bring it out for my 2 girls to read when they get older and particularly when they are giving their old man grief…..hoping that they will take pity but in truth they will never know how close they came to not having their Dad around and thus I treasure every day that I see them grow up. Others may read this and take comfort out from it – I would feel very good if that was the case.
Lady luck, as you will read, plays a major part in my story and I know that I have been extremely fortunate. I fully intend to appreciate all aspects of this good fortune moving forward.
I am eternally grateful to Henry Marsh and will never forget what he did. It’s hard to explain to people what it’s like to go through a near fatal experience – it’s frightening, absolutely petrifying but also very frustrating and your mind doesn’t help you – you enter a rollercoaster of emotions and grab any sign of positive news and hope, just hope that you will get through this, have a joke about it and just get back to normal.
The story runs from Friday February 1st 2013 until Feb 2014, with the real action occurring in a very intense month of February 2013. There are so many people who have been incredibly supportive and they know who they are, but very special thanks must go to my parents, sisters, daughters and of course my wife, Katherine.
WTF – Diagnosis
“We’ve found something I’m afraid Mr Richardson; it’s a brain tumour….” It was approx 4pm on Friday February 1st 2013, the time my life changed. I duly fainted in the consultant’s room, a real Hollywood effort and when I came round I asked the Neurologist to repeat what he had just said…….I asked questions but nothing was registering and I certainly wasn’t listening to any of the answers. “please don’t bullshit me here, but with a scale of 1-10, 10 being I am dead in a month, what do you give me?” I enquired wanting to get to the point. “a 6, but you are seriously ill Jim and have a long journey to go on which involve huge risks; you have acute hydrocephalus and a pinealoma, a tumour of the pineal gland and we must operate immediately to release the pressure.”
Random thoughts entered my head – How the hell do I inform Katherine? My parents? My sisters? My friends? I concluded very quickly that I had to deal with this head on (sh*te gag) It has happened, I can’t hide from it and I will need all the love and support from those closest to me. I was a very happily married 42 year old father of 2 gorgeous girls, had a good job and plenty of mates – what the hell is this? This isn’t supposed to happen!
I had been suffering from headaches for a few weeks, but not the kind you would assume a tumour, but they had started to wake me up from sleep. My job is fairly full on and I had thought that I was clearly working too hard, it was smack in the middle of winter (a cold one as well) but I was actually in pretty good physical condition. I had lost almost 3 stone in weight just before Christmas and was running 5 miles at least 4 times a week. Ironically, I was the fittest I had been for years but the headaches and more recently pulsing sounds in my ears were becoming irritating. Maybe I was coming down with something – a virus, yes they seem to get used when a diagnosis isn’t obvious. But not a brain tumour, surely, people die from those! On reflection, I sometimes wonder why I chose the latter end of 2012 to lose weight and get fit – I had been very active when younger and like many had allowed middle age spread to take hold post the age of 35. But losing that weight without doubt gave me a much better chance of survival during the operations and recovery. Did my subconscious know what was going on? – lady luck played her first tune before the nightmare had even started!
Things started to get worse at about 4am on a snowy Saturday morning (Jan 19th). I awoke with a real humdinger of a headache – really pulsing through my whole head. I returned to bed and Katherine had to go and get some hard core migraine pills. I stated vomiting at around lunchtime but by the evening I was starting to feel better. The next morning, the headache had gone but my vision was distorted – everything seemed to wobble in the middle of my sight. I put the distorted vision and extreme exhaustion down to a lingering migraine, nothing to worry about I convinced myself. It’s incredible how your mind lies to yourself to make you feel better – no wonder we are the most dominant species on earth!
Looking back at old photos now, the weekend before I was diagnosed we have a picture of me taken at the local pub which shows quite clearly a bulge in my forehead. John Merrick would have been extremely proud!
I was due to get up at 5am the next morning to get a cab to King’s Cross, where I would board a train to Manchester. I was hosting a 2 day meeting with my global team with colleagues flying in from Singapore, India and the US. I couldn’t let them down and despite Katherine’s pleas to take the week off, I cracked on. I recall having to leave the meetings at regular intervals to be sick, but no-one suspected and when I went to bed early no-one guessed or knew how ghastly I was now feeling.
That Friday I went to my GP who checked behind the eyes and confirmed that everything looked ok and maybe a Beconase nose spray would help! I don’t blame the GP at all – clearly brain tumours are thankfully rare. To put my mind at rest he referred me to a neurologist in Guildford the following week. I checked myself into the opticians later that day and again they confirmed that as far as they could see I was ok. Interestingly enough, one of the eye tests they did involve looking at a number of straight dark lines vertically next to each other. They were all wonky and for the first time I had a fear that something more sinister was at play. It was a small feeling in the pit of my stomach but definitely there.
The following work week was typically busy – I had some tricky year end reviews to complete on the Wednesday and I do recall that during those meetings I was beginning to feel pretty awful. I recall getting home one night, and collapsing through the front door into Katherine’s arms. My mother in law was over for supper and remarked how shocking I looked! I was exhausted, really bone achingly tired – it felt very much like flu but clearly I had no idea of the horror that was to come.
On the Thursday night I had a quick drink with a couple of work colleagues and I mentioned I was having a scan the next day and was a bit apprehensive. Being good friends they put my mind at rest and told me to stop whinging and that it would be fine. Friday morning came and I drove into Guildford for the consultant Neurologist meeting. We had a good chat, worked through some co-ordination type exercises and then concluded that my eyes seemed ok, nothing visible to explain the vision but we should do a MRI scan to eradicate anything sinister. I was very kindly fitted in for a scan slot at around 2pm and thought that would be enough excitement for one day.
Having been inside the groaning magnetic tube for about 20 mins they stopped it, pulled me out and injected a dye into my arm. I didn’t think anything was wrong, and after the scan, the radiologist informed me that the Consultant would fit me in at the end of his day, saving me another trip. As I walked into the Consultant’s room, I thanked him for fitting me in, but his face told me something was up and then he hit me with news.
Who do I tell? My secretary called first asking how it went and without thinking I told her the news (which I instantly regretted) – silence on the end of the phone and my secretary is never silent, never! It was a reaction I had to get prepared for as people find it very hard to hide the horror when they hear that someone they know, and care for has a brain tumour. Human nature dictates that they think the worst scenario and I certainly was in that camp. The easiest thing would be to bottle it in, not face up to it, but I felt strongly that I would be very open about it and face whatever horrors I had to, but use humour and my friends to get through it.
I was told not to drive home and they had to take some blood straight away – I guessed to check to see if I was riddled with cancer. I can’t recall how I told Katherine …she tells me she was driving to pick the girls up from school and had to pull over. I then became rebellious and explained to the hospital staff that I was going out for some fresh air, only to get into the car and drive home! During the drive, I opened all the windows and thought how best to manage this – it was all very surreal.
I recall phoning my boss at work and a few close mates opening up with “I can’t dress this one up I’m afraid, but I’ve been diagnosed with a brain tumour..! The reaction was pretty stark, my guess is they all thought as I did, that I was toast it was just a matter of how long I could fight it. I called my sisters and then my father who was on holiday abroad with my mum- I had thought about not telling them but as a parent myself, I quickly concluded that they really ought to hear this kind of news.
The 4 days between diagnosis and meeting my surgeon, Henry Marsh were probably the worst and saddest of my life. I was convinced I was dieing and every time I saw my daughters, Megan and Ella, I would find it impossible to keep the tears in. I did not sleep a wink…..my mind was rushing, the gremlins set in at night and set me on my way to an early death, missing the girls growing up. I was very scared. There was no anger at “why me….” But a real sadness that having reached 42 with everything I had ever wanted in life, it was going to be taken away by the grim reaper. I had too much more to do, to accomplish. Those who know me well know that I tend to live life to the full, never shy away from problems or issues, but will also be right there if mischief and fun are on the agenda. My oldest mate popped round on Sunday visibly upset and we had a coffee around the corner where I asked him to make sure my daughters hear about their dad’s childhood. How could my life change this much in 48 hours!? Surely there’s a good news story, a bounce back, a dramatic recovery…I called a couple of medic friends and their synopsis was grim but truthful.
As a family, I recall we went to pizza express on Sunday teatime and saw friends of my parents – normally I would go over and say hi and a chat, but not today. We went back to the house and watched a DVD as a family and I broke down and had to go next door…….our lives were about to change forever all due to my condition. My daughters aged only 8 and 2 were going to be impacted by this bluddy thing growing in my head they didn’t deserve this – they were too young to be part of such a real life dramatic event.
My parents flew back from holiday early and came round on the Monday afternoon to see me – I couldn’t keep the tears from flowing and asked my folks to look after my family if the next few weeks didn’t go my way….that must have been hard to listen to but I was feeling absolutely desperate.
On Tuesday Katherine and I went to meet the Brain surgeon, Henry Marsh in London. We sat in the waiting area and were called in and I met for the first time the man that was to save my life. Henry Marsh looks older than his 63 years – clearly he has a stressful job and I recall studying his hands to see if they were steady….I felt ashamed afterwards for doing that. “I bet you’ve had a tough few days” was his opening line…..clinical, straight to the point – “I think I’m going to like this man.” I immediately concluded. He then proceeded to tell me what I had, and what needed to be done. “Your eyesight is already failing, that will go in a week or so and then you’ll die shortly after due to the pressure build up. Once we’ve operated initially to relieve the pressure, we’ll give you a week to recover and then go in through the back of your head and try and get the tumour out. We’ll take a biopsy and then judge whether to carry on or leave it. If malignant it could be best to leave it where it is and go straight to chemo and radiotherapy.” He then went on to explain that the operation was dangerous and puts pressure on the heart and thus I would need a hole in the heart test to ensure my heart could take the strain. I guess my feelings at this point were mixed – I now knew how seriously ill I was but at the same time we had a plan that could get me back to being normal…..a chink of light, hope, something I could cling to.
Hope is a word I came to study and define many times over and thus became the title of this short story. Before leaving, Katherine asked whether he would recommend anyone for a second opinion to which his answer was a classic “well I’m probably the most eminent brain surgeon in the UK and have pioneered these operations but you are entitled to…” in essence he was saying I am your best hope sunshine…..Later we would feel ashamed for asking for a second opinion and quite quickly realised that my life was in very capable hands – if anyone could do this, Henry could.
Strangely, I felt much better after the meeting – I could now concentrate on the plan of action….there was hope. I later spoke to my cousin, who is a breast surgeon about my concerns regarding Henry’s age. His response was short but spot on ” in brain surgery Jim, you need experience not speed….this guy has years of experience so my suggestion would be to run with him..” I also spoke to Katherine’s Aunt who herself had had brain surgery as well as one of her daughters. Again, it was great to talk to someone who has been through a similar experience and her advice was blunt but wholly truthful – “you will be fine and get through this but you are about to embark on a tough journey where you will need to dig deep but have hope you’ll pull through, there is a light at the end of the tunnel”
Your mind starts to do odd things – I cashed in my season ticket and we scaled back the house extension that was fully underway. Henry would later warn me not so self diagnose myself using the web, but it’s very hard not to. What I read sent me into a tailspin…..why on earth did I have to have such a rare tumour with no stats to support how it should be treated.. I searched Henry Marsh on Google- he looked like the main man – bags of experience. I started writing down notes to Katherine about how to access our bank accounts on-line in case I didn’t make it through the operations. I contacted work to enquire about the death in service and critical illness cover, praying I would need the latter and not the former. The payout on my death looked ok, Katherine could certainly keep the house going if I kicked it and hopefully we would have enough to alter the house if I became handicapped post surgery. It was very strange being so clinical but there was no time, once I was under the knife all the eventualities were possible.
Operations and the week in between
The wait before the first op was getting unbearable – I knew what I had and was waiting for the first op to release the pressure. I took solace in music. Music has always been a passion (despite not playing an instrument) and I started to listen to the lyrics intently. Carole King, Neil Diamond, the Carpenters all took on new meanings. I have subsequently made a play list of all these songs plus others that could be related to what happened….some are quite dark such as “alive and kicking” by Simple Minds. “Home again” by Carole King prompted a flood of tears, and still does today – “whenever will I see home again?” I just didn’t know if that would happen again. I so longed for a miracle, a prayer, something that would take me back to my ordinary life. If someone had said that if I ran 5 marathons in 5 days I would be cured, I would do it. The physical, surgical aspect of this thing was out of my hands, now in Henry’s, but I could control the mental aspect. I clung on to every hope I could find – I had to remain positive, not to give in but wow I was petrified!
We took the decision to move the family to my parents. With both sisters nearby the extra pairs of hands would be invaluable to help Mum with the girls, freeing Katherine to be with me. My mother made me cry when saying to Katherine “I’ll look after your kids; you just look after my son…” I’m not sure if it was my mind playing up but I sensed the pulsing noise in my ears was getting worse. I called Henry and explained my worry to which he replied that it would be very unlikely that I would suffer a catastrophic reaction to the pressure build up before the following Monday but then again he had known patients who had died before even getting to the operating table. Once I had heard that, I lost it and Henry sensing my angst agreed to bring the first op forward to Friday morning.
The night before the first op, my dad took me into The Atkinson Morley wing in Tooting. The nurses settled me into a bed on one of the wards, but the seriousness of my condition began to sink in. Henry, not for the first time, flouted hospital rules and told me to go home and come back by 7am the next day rather than get zero sleep in the ward worrying. That night would run a familiar theme – pure insomnia, light and radio on. I didn’t want to fall asleep in case I never woke up!
The next morning, Katherine drove me to the hospital – I would imagine the conversation was lacking but I wanted to focus on what was going to happen. For some reason “I kissed the spikey fridge” by King was going thru my head – a heavy bass beat but an odd song to be playing through my mind considering I hadn’t heard it for over 25 years!
It was pretty quick preparation before the first op and Katherine joined me in the ante room, where I was given a fabulous drug to sedate me – I recall I was flying above the bed but then the main anaesthetic kicked in with it’s cold sensation through the arm and I was gone…..I was surprisingly calm in those last few seconds as I would also be for the main operation. Katherine’s step dad, David, was one of the world’s gems, a lovely warm man who I had hit it off with straight away. He unfortunately passed away 18 months previously from cancer. I felt that if I was not going to make it through the operations, then there was at least someone I knew and respected who I could have a beer with on the other side. I can just imagine how annoyed he would have been to see me!
I remember waking in recovery and felt quite with it. Katherine came in to see me and we had a couple of gags about hair loss and then I was wheeled back to the ward. The next few hours were spent slowly coming round. I recall really struggling to go for a wee – several failed attempts later I went and ticked one of the recovery boxes. The ward was a war zone – I recall a number of priests coming in to give the last rights to a few patients and it begun to strike me that this was a place that some people never left. One of the side effects of brain surgery, particularly around the 4th ventricle, as I would find out later, is severe vomiting and that was going on all over the ward. The nurses were doing the best to help everyone but they were clearly understaffed and overworked. I was given pills to help with the pain and Henry popped in his running kit to see how I was. As he left he turned round and gave me the thumbs up. I felt very comforted. Clearly he knew I had tougher battles ahead but he is the captain of the positive thinking club, which is something I know he struggles with his patients – the careful balance of realism and hope…..you can read it in his book and the documentary he starred in.
Henry explained that it went all to plan and he had inserted a valve in the top of my head. I remember thinking that was a bit odd as we hadn’t discussed it but as the following week materialised it was used to save my life. , and not for the first time Henry’s experience and judgement was spot on. He clearly balanced information given on a needs must basis – a career in politics could have been an option!
I was moved to a room that night and I spent most of the night and early hours texting banter to friends. As soon as the UK mates were off to bed, my friend in Perth came on line and then others in Singapore and HK resulting in almost 24 hours banter -brilliant. I hope I have been able to portray my thanks to those who were on the other end of the phone at that time – They helped enormously. I’ve always used humour as a vehicle to deal with stress and boy did I need to use it now. Could the surgeon alter my dress sense part of my brain, the Aston Villa supporting bit were constant gags…..most just pleaded that my personality would be altered!!
By the next afternoon, I tried to exit but as I sat up, my head spun and I fainted. Katherine was shouting for help and as I came round, they were questioning which direction my eyes went as I went down. They rolled backwards, which was a good sign and signalled a faint rather than a seizure. As the operation was in the front part of my brain, the risk of seizure and fits is significant. (Another piece of information we found out along the way!)I had to stay another night and the next day we tried to leave again and I fainted downstairs this time and had to be carried back upstairs again and spend another night in hospital. Was I ever going to escape? I finally escaped the next day and armed with a large supply of sleeping pills arrived back at my parents house.
That week went painfully slowly and I was acutely aware that it could be my last. I recovered from the op pretty quickly and I had a full week to prepare for the main event. There were an awful lot of banter texts with friends. I received a lot of cards and one particular letter from a work colleague, who was going through his own very public work exit. To receive such a warm letter from him filled me with hope. Night times were the worst, Iplayer became my best friend and I had to take the sleeping pills to get any sort of rest. I had a heart test on the Friday, which gave me some sort of routine to the week. The main operation involved placing me in a sitting position to allow Henry to get into my brain from the back of my head. This puts additional pressure on the heart and thus they needed to check that I did not have a hole in my heart, apparently a normal condition that affects around a third of adults. I recall the appointment with a very pleasant heart consultant, we bantered about sport for most of the time and the test went well showing that my heart appeared strong enough to progress.
I wrote letters to Katherine and the girls. It was genuinely the hardest thing I have done – the opening line to both girls’ letters started with “I am so sorry that you are reading this as it had meant your daddy had not made it through…” I can’t completely recall what I wrote but it was torture and involved a lot of parental preaching…..the kind all kids hate to hear but I thought if I had died, the girls would read it and take it in out of respect for their old man. Katherine’s letter was simply terrible….I was saying things like move on for the good of the girls but at the same time saying don’t forget me and lighting candles on my birthday etc…. all very strange. I prayed that I could burn the letters at a future date.
The final 2 days up to the operation were extra painfully slow – it felt that life was moving in slow motion. The day finally arrived – Monday February 18th will be etched forever in my mind – this was it, the day that would shape my life going forward. It could also have been the day I died.
Katherine and my father drove me up to Hospital this time, again I don’t recall a lot of chat going on in the car and when we arrived in the waiting room in the ward, I was asked to fill in a form and await next steps.
Henry’s co-surgeon then took Katherine and I aside to an adjoining room. “I’m sorry but I need to run through the consent form with you..” He then proceeded in taking us through the risks of blindness, paralysis and death with not massively favourable odds. I felt for Katherine…..for me I had no choice but to go through the surgery. I signed the paperwork and then walked along the corridor, clinging onto Katherine, to a little changing room. I slipped on my gown and then walked to the room next to the operating theatre. I cracked some gag about doing a runner, but in truth I was petrified and had zoned out. I got onto the bed, the canular was inserted into my hand and I said goodbye to Katherine Hoping for all eternity that I would see her and the girls again. I muttered something along the lines of look after the girls but I was somewhere else. I recall that the anaesthetic really hurt this time and as I whined, it went dark and I was out and in the lap of the gods.
Katherine met up with my dad and they then spent the next few hours in the cafe trying to not think about what was going on. Katherine thought the op was 5 hours but it was well over 6 hours before she got the call that I was waking up. She tells me it was the worst few hours of her life…..you forget sometimes what toll this takes to those around you.
I remember waking up in recovery and feeling spaced out. Clearly I was on morphine as I had no pain. I remember being simply overjoyed to see Katherine and my dad and then proceeded to check my fingers and toes- yup they were still working. I felt ok, is this it? Am I through the worst?
I was moved into the Intensive care ward for the first night. That night in intensive care was tough. At one stage once Katherine and my dad had left, the nurse put an ECG on my chest to which I enquired why and indicating that the problems were in my head. She then explained that I had had a couple of embolisms during the op so they needed to check that my heart was fine – yikes! I was also warned by the nurse that a very sick patient was being moved next to me. He was clearly in pain and not in good shape, which resulted in the poor bugger “flat-lining” and not making it after a few attempts to resuscitate him. Stay calm jimmy boy, I thought to myself, you’re not next….another patient who clearly was not with it and in terrible pain was shouting and screaming at the doctors and nurses. He was then doped up because he went quiet and allowed the rest of us to get some sleep. The intensive care ward is like a flight deck – the army of doctors and nurses stationed centrally running to patients whose machines had indicated a cardiac arrest……this was a place so different to my normal life.
Henry said that the op went well, the good news was that the tumour and the pineal gland had been taken out in full, the not so good news was that it looked a little malignant. Tests showed later that it was a grade 2 and thus I had faced the dreaded Cancer face on and would need monitoring. My neck was incredibly stiff (as Henry had to cut through the muscles) and I could feel the staples keeping the wound tight at the back of my head. It felt like a zip holding the contents in….the gags came in on the text – had they filled the space with cotton wool? newspaper?, how was the surgeon?, in shock as he found a wide open space when he went in…etc…
Brain surgery is all about ups and downs and at that stage I felt generally ok and clearly on one of the ups. That was about to change……
The next few days went well – I was moved out of intensive care and into a room back on the ward and I was doing ok. The nausea was terrible and the multiple drips were keeping me pain free and sane in equal measure. When I felt sick, it was always a rush to call the nurse in time before I vomited. Those little cardboard egg holders / come sick holders became vital and when the anti sickness medication was put in via the IV the hit was instantaneous and the sickness feeling moved south and then disappeared. Then, unfortunately I entered a new hell.
I can’t recall an awful lot of the next few days – I couldn’t even remember my mother coming in to see me. But I knew I wasn’t functioning too well. I felt quite out of it…spaced out. I had contracted meningitis – they were unsure whether it was the very serious and deadly bacterial version or chemical meningitis caused by the brain swelling post surgery. As well at that time, the pressure in my head had rocketed and my head was now pulsing again and hurting through the morphine! I was given a cocktail of drugs including steroids to reduce the swelling and that’s when the real fun began. The valve on my head was opened up and a drip was attached 24/7 – I must have looked like Robocop or iron man. No pictures were taken thankfully. My arms were bruised all over from the drips and numerous failed attempts to find a vein. A Chinese man was the king of vein finding and I started requesting him when it was time to swap veins.
I began hallucinating- snakes were jumping out of the basin in the corner of the room and attacking me – I recall swaying from left to right to avoid their aim! I was certain I was a spy being interrogated and thus started to ask “spy like” questions to the nurses in order to trip them up. It was also during this time that I had an out of body experience. I recall looking through some gates, the image was blurred but I was determined to see who was in behind the gates. I definitely got the feeling I was doing something forbidden but I couldn’t quite see round the gate and after a period of time I felt a tug on arm and a sensation of being pulled away. I have thought about this long and hard since it occurred and have been questioned it several times. I know I had the experience but at the same time I was James Bond, dropping in behind enemy lines and fending off snakes thus I am relaxed about what it means and don’t have any plans to investigate it further.
I also sent texts to several people where I stupidly copied the initial response and pasted it to several people. I thought the text was pretty clear and explained that I was feeling better but in fact it was something along the lines of “xcvfbbbnmmhh” i.e. complete gibberish. One work colleague on holiday in the US became very concerned and started contacting work to see how I was and another actually phoned the hospital and got through to my ward asking them to look in on me! Katherine immediately confiscated my phone and proceeded to phone all the recipients of my dodgy text to explain that I wasn’t quite myself.
Tuesday 26th February was the depth of my relapse, and it was about the same time as I had the out of body experience. It was made clear to me that I had to start moving to give the body a chance to start the draining otherwise they would have to operate for a third time. I knew the risks, and the likelihood of scoring a successful hat Rick seemed low. I had survived 2 ops already, a 3rd would be pushing it! So Katherine and a tough German nurse began pushing me to get up and get moving. I really felt awful and didn’t want to get up but the thought of going under the drill again filled me with horror. Somewhere I found the strength to get up, shower (sitting down), shave and walk about. Without getting too dramatic, I had to dig very deep at this time as I was feeling horrendous.. On the walls of the ward they stick letters from past patients explaining how they are very grateful for the care and have recovered. These letters became inspirational – I particularly recollect a picture of a traffic policeman on his motorbike who had gone back to work and thought to myself how amazing it would be to get back to work and normality. When you are in a neurosurgical ward, you become very institutionalised and sometimes forget what goes on in normal life. I recall getting quite tearful and fed up because I had also now got sciatica alongside chronic constipation. This had now taken me over the edge and I blubbed openly for the first time since the op. Katherine was simply incredible at this stage and pushed me hard into getting up and moving about to try to get my head to drain. I had hit rock bottom and craved to be normal again. The nurse had a couple of attempts at an enema – no luck, it’s not the first time that I have been accused as being full of shit!
I subsequently learned that that Tuesday night was a low point for Katherine and my father. I found out that Katherine had broken down at my parent’s house that night as the surgeons were so worried and convinced that another operation was imminent. I clearly was having difficulties and there was the real risk of another brain operation for a stent and worse if my condition didn’t improve. Katherine asked my dad to get to the hospital first thing on Wednesday to be with me as I had become paranoid and convinced I was going to be operated on again.
But something incredible happened overnight. On the Wednesday morning, I awoke and felt different, felt better, much much better. I have to admit for a fleeting moment I thought I was somewhere else – had actually died and thus this was the next stage. I felt pain free, had no sickness and for the first time in a month I felt normal. The breakfast rounds had missed my room (again) but this time I buzzed and asked for cereal and some bread. Instead of feeling sick, I was starving and demolished the food. I felt great, what the hell had happened? My dad arrived expecting to see me at death’s door and was met with a chirpy son ” hi there mate…” The look of surprise and relief on his face was something I won’t ever forget.
During the morning, my nose had felt wet but when I blew it, it was dry – the feeling of running liquid behind my nose was strange but could this be the drainage working? The pressure was checked on my valve – it had dropped from 40 to 18 and was almost normal !!!!! Yes, this mini victory was mine. Little did I know, but this was the start of the proper recovery.
Henry and the other consultants were visibly more relaxed that day – it’s amazing what you study when you’re bed bound – you search for any kind of change in body language. Today, the mood was certainly more relaxed, the feeling that I was out of immediate danger. Henry was like Eric Morecombe – kept cracking gags that I should get back to work soon to help the failing economy!!
I am in awe of this man, Henry Marsh. Here is a proper brain surgeon who saves lives on a daily basis. He was almost always brutally honest – including himself, I guess you have to be. He explained that with brain surgery you only tend to extend people’s lives, but every so often you give back life, his “prizes” and he hoped and expected me to be one of those. That was it, I was off crying again. I so wanted to be normal, to do normal things again. He also explained how tough it is to talk honestly and also give hope. Most brain tumour operations only extend lives and thus is it his right to not allow a patient to have some sort of quality of life for the short period remaining.
A nurse came round to test my mental agility, which I seemed to nail but I was still struggling to see very well so the observational puzzles were ridiculous. I recall Katherine letting her know her views – the “Pankhurst” in her that I love came out in bucket fulls!
Within a couple of days, I was being sent home! It was March 1st and only 1 month from being diagnosed! The journey back from Tooting was tough – I felt nauseous and had to go straight to bed as soon as I got to my parents house. They were clearly very happy to see me but at the same time very anxious about me returning so soon after the dodgy events earlier in the week.
The first few weeks’ recovery were slow – I was behaving very similarly to a new born child. I initially slept most of the day, and then gradually I would spend more time up and about downstairs. The nights were still the worst – the light was always kept on and the radio was on at all times. Test match special from New Zealand became a comforting mate as well as the BBC Iplayer. That still remains my perfect job – radio cricket commentator, following the sun and warmth summer and winter bantering about a game about a bat and ball – marvellous.
I had lost a lot of weight – I reckon I was down to around 11 stone and started eating for England, then Britain and eventually Europe. – My dear mother cooked legendary treacle tarts etc… and I happily woofed it. She was an absolute Trojan keeping the meals going and coming up with many different soups and casseroles. I recall watching my daughters open a selection presents, very kindly sent to them by my work mates. The joy to see the girls thinking it was Christmas again was unbelievable. I recall that I only had enough energy for about 10 mins present wrapping before crashing out again – would I ever be normal? Several of my school mates popped in and I could see their faces gasp at my scars but the piss take would then restart again to my relief….”have they done you a favour and extended your manhood with the tumour? “ was the latest quip.
After a few weeks, I started making a few trips with my dad in the car – lunch with my aunt, a pub lunch etc…and slowly I began to get back on my feet. I recall the lunch out with my father and aunt – it was my first real trip out and I struggled to follow the conversation and realised that I would need to get my brain speed back if I ever thought about going back to work. It was quite a sobering jolt. I took myself off the medication and immediately felt less dozy. I started to speak more openly about the experience even though I was not yet given the green light – and immediately felt guarded, as if not to count my chickens too early.
Katherine drove me back to the house one Sunday afternoon and I cried all the way, breaking out into uncontrollable sobs as we came into the driveway. I honestly didn’t think I was ever going to come home, so to actually achieve it was all too much. We then popped in for tea with some close friends and I broke down again…..the emotional impact was something I hadn’t really anticipated.
April check up and recovery picks up
The day of the April check up came…….I had been feeling nervy the whole week before. This time the whole spine was being scanned as well as the head, and I was feeling every creak and ache in my back as being a sign of multiple tumours. There was a small risk that I had a condition that meant I had a number of tumours on the spine and the diagnosis would be grim. I was feeling pretty good and kept saying to myself that I was feeling too strong for there to be a big problem. Sadly, this is warped thinking, but not for the first time my mind was tricked to make myself feel better. If positive thinking makes a physical improvement I was in good shape. We arrived at the scanning ward and I took a deep breath and endured 2 hours of MRI scanning – stuck in a small tube with banging and clattering all around as if midgets were somehow hammering at work around me. I did recall that I should prepare a play list for them as their 80s mix was ropey and needed some New Romantics! Bit of Spandau Ballet with fellow brain tumour survivor, Martin Kemp, was definitely required.
We waited outside Henry’s room; he spotted us and gave a warm smile before asking us in. He seemed excited, pretty animated. He hadn’t yet reviewed the scans and thus we all reviewed them together for the first time – he clearly felt confident. Then I heard the words I had dreamt several times over the last few weeks…”.you’re clear”. I gingerly asked whether I was all clear – 96% clear was the response! Wow. I can’t really recall the last 10 mins but I was told to get on with it, my body will tell me if I shouldn’t do it – I could fly, no need for physio for my stiff neck, I could return to work but would need to train the brain again….it needed working.
We left my parents house at the start of the Easter holiday and moved back home. We were crammed into the annexe so the chance of a restful recovery was limited, but actually it was just what I needed. Henry was very keen to always point out that I needed to push myself….only then would I know what I could do…..and he had been right on pretty much everything so far Once I returned home, I embarked on a strict regime of 2-3 hours of brain training and regular swims. The brain training helped me gain confidence that intellectually I would be able to eventually cope back in a work environment. The swimming enabled me to regather some fitness and muscle shape. I’m not normally a great lover of swimming but I learnt to enjoy the physical rigour and used each length to think about that year in my life – clearly length 42 was tough and I always swim that length quickly!
Week on week I gained strength and regained confidence that Jim II was actually an ok model. I received a very touching e-mail from an old boss which lifted my spirits hugely and have the confidence that I was ready to return to the world of work and make a difference again. Humour remained a key ingredient of the day. One of my close pals who was updating my old work mates as to my condition played a particular blinder – he emailed them to say that I had unfortunately turned “gay” as a result of the operation and that I was very sensitive about it and was working it through with Katherine. For the next 2 weeks I was getting all sorts of weird mails from people “Jim, the fact that you’re alive is the most important thing….if you need to talk about what you’re going through, then please do..” I confronted one of the senders and found out the truth – git! Months later I would be taking the piss out of the same individual in the pub about turning 50 (as he was about to) and his response was typical “Jimmy, not sure why you’re worried, you won’t make it anyway!” brilliant !
My boss came to visit the family…..I was very touched and we went to dinner and discussed what had been going on at work…it set my juices going and I became more inquisitive. Pete, who had been brought in to cover my role, fortunately lived very close by and I started pestering him more and more about work issues. The weather was picking up and getting warmer – I would walk the dog most days and when Katherine left the house, the music levels were ramped up. I started rekindling my love of the Smiths and other alternative 80s bands…
I organised a 3 day trip to Cornwall with dad in April – we had tried unsuccessfully to arrange this for years and so with great delight we had a fabulous 3 day bonding. I played my first round of golf and despite losing quite a few balls as the eyesight was still not great, my putting ironically was better than normal !! We had a few meals out over some wine and I hammered him with question after question wanting to find out about the family and his views on his life and situations. It was an utter joy to spend the quality time and I felt that we had reached a new level of relationship which I am very happy about. The following week, I took Katherine away for 2 nights to Dorset. She was clearly exhausted and thus we spent the 3 days lazing around and sleeping! We enjoyed one particularly special evening in a restaurant overlooking Poole harbour with the sun going down – it was invigorating to be with my favourite person in the entire world in a beautiful place drinking pink champagne!!!!
A week before returning to work during May, we took the whole family to Prague to stay with close friends for a week. It was a great week, the children had a great time but it never stopped raining! Prague city centre was entirely flooded! It was a Noah’s Ark experience as even the zoo was evacuated!
Work have been incredibly supportive and allowed me to phase my return by initially going back 3 days a week. I was so excited that first Monday morning – I looked around the train carriage- lots of grumpy looking commuters. I couldn’t keep my smile away, here I was returning to work 4 months after my life had stopped – I felt a surge of satisfaction rush through me. I was back and boy did it feel incredible. To Katherine’s horror, I had started using Facebook while recovering and my entry this morning simply said ” First day back at work after 4 months 10 days out – have so many people to thank for their support. Please keep the banter coming…” I was tired but ecstatic to be back at work and ready to repay their faith. After initially phasing back 3 days a week, I stepped it up to 4 days after the summer holiday in July. There was no pressure from work to step it up, but I was up for it and with Henry’s words about pushing myself ringing in my ears, it was the right call to ramp up.
I had an amusing work medical in September – normally you have the full array of checks and then told you need to eat better, lose weight etc…They asked me what I wanted from the medical. I was blunt and straight to the point…” I am recovering from a brain tumour, so please check my blood pressure, white platelets in my blood (for cancer) and my prostate. Thankfully the platelets were low which gave me confidence that the tumour was a primary growth and I wasn’t riddled with cancer. I know of 2 work colleagues who found out they had cancer from that test so getting through it was a big plus.
I went back to see Henry in October for the next scan. I was equally nervous before this scan but was feeling strong and thus surely I was going to ok? Katherine always calls me “jimmy jamster” due to my tendency to get Lady Luck to be on my side. I tend to think that you need to always ask the question, otherwise the answer will always be a no – thus you tend to earn the rub of the green in my view. I recalled the same dodgy 80s collection in the MRI tube – those songs are so naff, but excellent at the same time.
The scan was only an hour this time and then we headed down the road to meet Henry. He was running late (clearly operating on some poor soul) and thus the wait was longer than anticipated. Once it was our turn, he was taking a look at the scan before asking us in….unlike last time. “Bollocks” I thought, it clearly is a bigger deal than I was expecting or had the bugger grown back? He called us in and immediately said it’s fine, the scan is clear…… The discussion then was very jolly and we cracked a number of gags. He explained that in his view I was cured but needed to come back in 12 months rather than 6. He told us he was going to retire in the next 18 months and so October 2014 would be the last check up with him. He reminded me again how lucky I was ….jimmy jamster to the fore and I plucked up enough courage to ask him how he did it……he showed me and it quickly dawned on me how lucky I am.
I am regularly asked how have I changed. The answer is not quite as straight forward as people are expecting. Yes, I think through things a lot more, I get impatient at people who procrastinate, but I actually am more normal than people probably expect. The biggest difference is that I’m a much deeper thinker now – taking time to review a situation rather than crash on through it and await the next challenge. I tend not to waste time on things that don’t warrant it….both at home and work. At work, I certainly see things a lot clearer and call out a lot more on people’s behaviours. I find it helps me in the work environment, knowing that however stressful it gets at work, nothing will touch the month of February 2013 and that is quite powerful.
Physically I have a valve remaining on top of my head, which will be a permanent reminder of what happened. I still get clicking sounds in the back of my head, similar to a dolphin, although these are reducing as the bone knits completely to my new cement in the back of my head. The eye sight has returned to 90% of what it was before, vertical lines still wobble in the middle but the wiggles are softer, more rounded now. It’s good enough to read, drive and play golf – and I’m fine with that.
Mentally I am very close to where I was before as far as sharpness. I can cover up when things take a little longer. My dreadful sense of humour, array of useless sports trivia and music lyrics remains intact. I am definitely more emotional, and I take more time over things I flew through before.
I know that I am not entirely out of the woods yet, as Henry has kindly reminded me a couple of times, but I am in a good place. I need to get through the next few check ups before I can claim a victory but I live life as if I am in the all clear. I really wish I hadn’t have gone through the last few months, most particularly because of the impact on those around me, but there are some real positives to come of it. I am adamant that the experience will make me a better person and I can concentrate on the more important things in life and not take my health and well being for granted ever again. This may sound quite odd and a touch dramatic, but if I can get through several more all clears I will see the last few months as a positive impact on my life.
There’s not enough that I can say about Henry Marsh. He’s clearly quite an eccentric, but an extremely skilful surgeon but there was something else to this man that makes him exceptional. He was always clinical in his advice and views, but balanced the giving of hope with the seriousness of the condition brilliantly. He has written a book where I am mentioned in chapter 1 and we went to see him for his Book launch – I’m not quite ready to let the man who saved my life leave my life just yet.
The staff at st George’s Hospital in London are stretched, no doubt about it, but they do a fabulous job in very trying circumstances. It does make my wonder how this great country has let the NHS decline so much. It preserves the most precious thing in life, life itself, and thus how we can allow the politicians to use it as a political football in order to obtain power seems quite disgusting to me now.
I met up with Henry’s co-surgeon in December for a beer. It was great to see him and he recalled how he remembered the operation well as it is a rare tumour. He kept on commenting how well I looked and after the 3rd time I asked him why he kept bringing it up. “People, who have your tumour and operations, don’t tend to look like you!” was his response”
There are huge positives from the experience, and I am determined to channel the positivity into making me a better person. My relationship with my family, particularly my father is awesome now. My respect for my wife is now at a place where she can never do anything wrong. Her strength in dealing with the situation and run the house and 2 kids is something I will always be in awe of – she quite simply is a very special human being and I am hugely honoured that she is on my side.
I feel blessed to have come through it, and sometimes guilty at having survived when I speak to others who don’t have a long term prognosis. I hear sad stories of permanent damage, cancer struggles, “Schumacher like” head injuries and death through operations and conditions less severe than mine and it brings it back – it’s never too far from the surface. I could tell by the way people hugged me when I first met them after the ordeal whether they truly understand. Their hug is longer than offers; it lingers clasping tighter than usual. I know that they have either had similar experience, or an extreme empathy. Conversely there are others who have no idea how traumatic the last few months have been. I am not sure if it’s out of ignorance, a lack of empathy or fright but they visibly struggle to discuss it. I don’t blame them; it’s not an experience I would recommend but its part of me now and unless you have experienced a near death experience, you don’t understand that experiences become so heightened, every card, text and mail is read, studied for glimpses of hope. Thus, when I hear that someone I know is unwell, I make sure I write or text as I remember what a difference it made.
As I finish this piece several months after what happened – physically and mentally I am back to normal. My neck is fine after a stint of physio, I am coping with work stress well and am running more regularly to get fit. I have lost ¾ stone in weight and have a bit more to go, I have even had a couple of humdinger hangovers which initially scared the shit out of me.
When asked, by others who have to face a similar struggle – I try to be succinct “have hope, do not ever give in, use those close to you for support and most importantly take in the experience and use it for inner strength – when you come through the struggle you will be stronger for having gone through it. That is your prerogative.”
I get a real kick out of people double taking when they see me……it just feels great. I’ve heard “I thought you died…” quite a bit. In meetings now when I meet people for the first time, they have no idea what I went through – I quite enjoy that bit too. Getting to over a year from it helps with moving on….I’ve now gone through birthdays, a Christmas and now the 12 month anniversary. Can I finally put this to bed? Nope I’m not quite ready to do that – This year’s scan is crucial and then after that I can hopefully move on.
When you’re lying in hospital thinking that your life is over, you hope so hard to return to normal…..I am very thankful that my wildest dreams have come true and there is more life in the old dog yet.
Jim Richardson 2014
My sister sent me a mail quoting a passage from Daniel Koepke at exactly the right time when I was struggling to come to terms with my mortality and the real fact that it was in serious jeopardy – it helped me enormously then and I read the words every now and again and it sets me off and reminds me of the depths of my fear, but at the same time it reminds me how far I’ve come and I feel pretty chuffed about that. “I have learned that the darkest times can bring us to the brightest places; the most painful struggles can grant us the most necessary growth. I’ve learned that what seems like a curse in the moment can actually be a blessing and what seems like the end of the road is actually just the discovery that we are meant to travel down a different path. I’ve learned that no matter how difficult things seem, there is always hope. And I’ve learned that no matter how powerless we feel or how horrible things seem, we can’t give up. We have to keep going. Even when it’s scary, even when all of our strength seems gone, we have to keep picking ourselves back up and moving forward, because whatever we’re battling in the moment, it will pass, and we will make it through. We’ve made it this far, we can make it throu