Martin's story - My adventures with a Craniopharyngioma
In early 2009, I began to experience a range of health problems. I was 40 at the time and generally very fit and active.
At that time, I was working as a manager at a hospital in Newcastle. I was an experienced manager and had worked in difficult roles before and the role I was in should not have caused me too many problems, but it was proving to be a bit of a struggle. However, I began to experience some health problems - more or less as soon as I arrived in post, in May 2008.
I was initially diagnosed with Graves’ disease. This problem led me to go into atrial fribulation and I had been admitted to the RVI in Newcastle as an emergency, and had undergone a cardio version to re-start my heart in the correct rhythm. I was starting to experience some problems with my peripheral vision and had problems reading documents. The text was blurred and rubbing my eyes just didn’t make any difference at all. I also had some issues understanding some of them and my levels of concentration were very poor.
I had not really had any headaches, but I had been incredibly tired for some months and I had been finding work quite difficult for the whole time I had been in post. On one occasion, my wife Rhonda, asked me to mow the lawn and I just fell asleep in front of the TV instead; I was so tired. The kids used to call me “Sleepy Dad”. When I mentioned this to my consultant endocrinologist, he suggested that I had some blood tests done, which I did. When he got the results back, they showed that I was deficient in testosterone and I think this made him concerned that there was perhaps something which warranted further investigation. I told him that I had also fallen asleep at work a couple of times in (very boring) meetings, I was so tired. I think he then put all of these issues together and decided that I should have an MRI scan.
I was pretty nervous about the scan; they arranged for me to go to the Newcastle Clinic on the town moor and have an open scan. However, they then recommended that an open scan might lead to sub-optimal results and consequently, I agreed to have a closed scan as long as they could give me some sedation. Big of me!
They arranged for me to go and look at the scanner at the General Hospital and talked me through the whole process. They said I could listen to music of my choice and suggested that an iPod was a good idea, as it could sometimes get quite noisy inside the scanner. So I went for my scan. I put together some tunes on my iPod as a playlist in readiness for the scan – Kasabian and Black Rebel Motorcycle Club.
I went in the scanner having taken a sedative earlier that day, given to me by a doctor and actually going in was no problem. There was a device which went on my head with a mirror, which allowed me to see out of the scanner past my feet and to be honest it wasn’t that bad. There was a fair bit of noise and clanking, which was a little unnerving.
I went back the following day and gave the Radiologist a bottle of wine for taking me through the process. Around this time, it all began to feel a little surreal. I think I knew something quite serious was the matter with me, but it didn’t cause me any particular worry or stress. It was as if what was coming was inevitable and there was nothing at all that I could do about it, so I was quite resigned to my fate. I had stopped even thinking about work as I think I knew that health was now the most important issue.
Next thing I heard was a call from the Endocrinology Department, following the scan, telling me that the scan results showed a cyst on the scan results and that I would need to be referred to the neurosurgeons. The referral was very quick indeed. I think from memory it was within a few days as an urgent referral.
When Rhonda and I went to meet a Neurosurgeon, in his office at Newcastle General Hospital, the cyst turned out to be a brain tumour. It was a benign pituitary tumour, which I had never heard of; four centimetres in diameter. This was one of the largest of its type that he had seen. He said that he would need to take the tumour out. Normally this was done by a transsphenoidal operation, which is basically through the nose. However, mine was in a more difficult location – 11 centimetres inside my head.
He showed Rhonda and me the picture of the tumour on his monitor (on his desk) and there it was - right in the middle of my head, like an avocado stone. He explained that he would take it out via a craniotomy. This would involve initially cutting a six inch hole in the top of my head. Because of the exact location of the tumour, he would need to split the two parts of my brain and then insert a long type of sucker device between them, which would break up the tumour and allow him to take out the bits through the top of my head. It was easiest if the tumour was soft but sometimes they are more rock like (calcified), but he said he wouldn’t know for sure about this until he started the procedure.
He also mentioned that the tumour was very close, or attached, to something called a hypothalamus, which is a part of the brain. I had never heard of this at that time but was to find out a lot about it later as it turned out to be a very important part of the body which manages aspects of behaviour like appetite, fluid balance, body temperature, sleep and fatigue.
The tumour itself was a pituitary tumour. This meant that is was attached to the pituitary gland and it was therefore likely that he was going to have to remove or damage the pituitary gland during the operation (as it happens he removed it in its entirety). I thought at the time that this would be important, as the pituitary gland is the master gland because of the control it exerts over other glands like the thyroid gland and adrenal glands
Half jokingly, I asked the Neurosurgeon if he had done this kind of operation before and he said that he had spent most of his training doing operations like this, so that was re-assuring.
There was no real discussion of how I would be after the surgery or what specific problems I would face. I suppose, that on the basis that every patient is different, it may not be possible for them to do that but I remember feeling quite strongly afterwards that it would have been helpful to be told what kinds of things I would have difficulty with.
We went home and I decided to eat lot of crisps and dips, like it was my last request before the gallows, while having a cigarette in the garden. The surgeon had told me that it would be helpful to stop smoking in the days up to the operation but I decided a last one wouldn’t hurt. I didn’t have any more cigarettes.
I remember walking round and round on the lawn, late on a sunny afternoon being quite nervous about what the future held for me. The date of admission was set for a few days later. The operation would be done at Newcastle General Hospital.
I had to surrender my driving licence at about this time and so I posted it to DVLA with a covering letter and in a funny way that was a relief – one less thing to worry about.
I recall packing some things to take. I was getting fatter and had bought a horrible purple Atari T-shirt from somewhere and I took that with me (I think I have now thrown this away as it always reminded me of hospital) along with a Ramones T-shirt. I took my iPod and a couple of books, one of which was the ‘Unforgiven’, which is a kind of follow-up to the ‘Damned United’, a history of Leeds United under Don Revie.
In a way, the whole thing seemed very surreal. I would compare it to the feeling of going on say a residential training course for a few days, but not going to hospital to have a hole drilled in my head and have someone meddling with my brain.
I remember arriving by car on the day before the operation, 28th July 2009 (I think around mid -afternoon) and Rhonda parking in a small car-park tucked away next to the ward, round the side of the General Hospital. I don’t really remember saying goodbye to anyone at home, or what if anything I had said to Mum and Dad before leaving for the hospital. Rhonda was with me though.
We went up to the ward which was several floors up in a lift and we were shown my bed which seemed to be in the corner of the room. Lots of the other patients seemed quite ill. One guy was moaning about his back.
There was one patient who kept trying to ring a friend at Coxlodge Club. He rang at least 10 times but had the wrong number each time. At one point he had started a conversation with a total stranger. When he realised, the patients who had been listening to his little travails all laughed out loud. “Is this not Coxlodge Club then?” he said to whoever he was actually on the phone to.
I was getting really nervous. The guy in the next bed had about 12 visitors at one point, the night before the surgery. They were jabbering away. Some of them were young kids. Rhonda and I went to the day room to try and get some peace, but then some of them came in there and so I complained about the situation at the nurses' station. The excess visitors were asked to leave.
I recall waking up as if it was a normal day. I had a decent night’s sleep by hospital standards, but I became a bit tense as I knew I was first on the list. It is crazy, but I have been more nervous about job interviews, doing a best man’s speech at Steve’s (my brother’s) wedding and even doing a London marathon. I remember having the ingenious and groundbreaking idea of trying to stay awake during the anaesthetic and see how long I could resist it. Obviously, that went well and within about three seconds I was fast asleep. What a jerk!
I guess the five hour operation went well. I can’t remember talking to the surgeon about it as I think he had gone on holiday pretty much straight after the operation.
I believe that the neurosurgeon spoke to Rhonda (maybe I was there, but I have no recollection) after the operation and he confirmed that everything had gone very well. He said that part of the tumour was close to the hypothalamus and he had been forced to make a decision as to whether to remove the whole tumour and potentially damage the hypothalamus, or whether to leave some of the tumour in situ. He decided to remove it all. I think we were both sure that he had made the correct decision. He had also removed my pituitary gland during the surgery and this would have a significant effect on my production of a range of hormones.
The surgeon had told Rhonda that he thought I might never be able to work again. He said I would have problems with my appetite because of the damage caused to the hypothalamus. I remember him telling Rhonda, when we met before the operation, that she would have to keep the fridge door locked when I came out of hospital because I wouldn’t be able to control what I ate.
My memories of being in the High Dependency Unit at the General Hospital are not pleasant at all. This unit is now closed, but I have been to the new high dependency unit at the RVI on a work related matter and it was not pleasant for me. I think that visit brought home to me how ill people on HDU actually are and thus, how ill I must have been when I was an inpatient there. It was a sobering experience. I can remember it seeming to be in a very small room which I shared with another patient. He was behind some kind of screen and I don’t think I ever actually saw him. I recall pretty much being bed-bound at this stage and wasn’t really able to move around that much.
However, I have a very clear memory of lying in bed and the Endocrinology Consultant being in the room pouring over his charts on a table next to the window. They seemed to be very complex and he was updating various numbers etc. They seemed to go on for metres and metres like a roll of wallpaper. It was a bright sunny day and I recall feeling quite well and not being in any pain. I think I thought then, for the first time, that everything was going to be alright. Rhonda came in and she had bought some new kind of shampoo, a lemon zest type one, which was just fantastic. My catheter had been removed and Rhonda helped me get to the shower by my putting my arms around her and she sponged me down. It felt fantastic and the shower and shampoo were so refreshing that I have subsequently bought it to make me feel invigorated.
I vividly remember the feel of the scab on the wound on the top of my head, which was where the surgeons had cut my skull to access the tumour. It ran right down the middle of my head, back to front and had a dark scab all the way down. It felt extremely lumpy and pronounced though it wasn’t actually that bad. It wasn’t really too irritating and I don’t remember being in too much pain as a consequence of the surgery. Once I asked for some more pain relief and the nurse just gave me some paracetomol, so it couldn’t have been that painful.
I remember my room-mate’s visitors, who I guess were his mum and dad, and the nursing staff talking to him and using his name all the time from behind a screen or curtain. He never spoke. I don’t think he was able to. I think he had been involved in a motorbike accident. Every now and then he would cough, or there would be a horrible gurgling noise from behind the screen.
Sir Bobby Robson was in the Trust at the same time and unfortunately he died following his struggle with cancer. This was obviously big news and everyone who came to see me, including all the staff told me in sombre tones that Bobby Robson had just died.
I also remember the Lockerbie bomber Al-Megrahi being repatriated at the decision of the Home Office. This had just happened in the days after my operation. All of the news channels reported that he was to be sent home to Libya on compassionate grounds because he apparently had cancer and did not have long to live. You can imagine what my visitors thought of that!!
At this time I was having great difficulty with the patientline TV / phone contraption. I remember trying to ring Rhonda, but I couldn’t get the phone to work at all - possibly because I had insufficient credits but also possibly because I was trying to use the TV remote control instead!
One night, for some reason, they thought that there was something wrong with me. I can’t remember why now but Rhonda will know. I think I had possibly been a little more confused than normal. They sent me up for a CT scan which showed that there was some bleeding in the brain. I remember going for this quite clearly and being taken up on a wheel chair along seemingly miles of empty corridors.
On the ward, once my catheter had been removed, there was a toilet in my room which I was able to use on my own but occasionally I would forget it was there and so I would wander off down the ward looking for a toilet, when there was one two feet from my bed.
The highlight of the day every day (apart from the meals) was visiting. Rhonda was a tower of strength throughout all of this carry on and always cheered me up. I think in the early days I was quite confused about whether or not she was coming in (and she always did) and whether she had been or was still to come. I remember that I used to write down the details of when she was next coming in, in a little black book which I still have. She must have been so miserable, especially not knowing how everything was going to turn out in the end. I imagine she must have missed her Mum and Dad especially at this time but she has a very supportive network of friends that she can rely on. What would I have done without her? That really doesn’t bear thinking about.
She would bring me in a paper and usually some food that I had requested at her previous visit like some fruit or something.
I had become quite obsessed with getting my hands on a Snickers Bar. I hadn’t been able to get my hands on any chocolate while I had been in hospital as I had no money. I decided that I would get some from Rhonda when she came in to visit, under the auspices of getting some money for a newspaper. There was a guy with a trolley who came round selling papers and various things.
One day I asked her for some money “for a newspaper” and she gave me some money. I don’t recall how much, but it was a note. I was quite confused about where I was at the time and so I told her that the money she had given me “was no f**king use to me” as it was the wrong currency. I told her that I “can’t use that in here”.
We do laugh about this incident now but I guess it just shows how confused I actually was at the time.
Mum and Dad
Mum and Dad came to visit frequently too. I remember the difficulty with visitors is that I would look forward to them coming all day, but really found it hard to have anything to say when they come.
They bought me a small transistor radio with little headphones, so that I could listen to the cricket (the Ashes in Australia were on at the time). It had a small dial which you could use to tune it in. Unfortunately it was just such a confusing device that I couldn’t get it to work at all. It is funny really as it is such a straightforward device to use, but I just didn’t even try and use it after a while.
Ward rounds – reading etc
I remember one doctor in particular who seemed to lead on the ward rounds. There would be a group of doctors and nurses who would come round together and look at me, while I just lay there looking like something out of ‘One Flew over the Cuckoos Nest’. I remember vividly him doing the whole introductory bit each day of “This is Mr Crosby, came in for a craniotomy on Thursday, doing well, currently on 10mg hydrocortisone blah blah blah”.
I have subsequently emailed him to thank him for everything he did for me back in 2009. He replied to thank me for getting in touch and saying that it was nice to know how patients were getting on as they rarely heard what happened to them in the end!
I remember they gave me various things to do each day. They would ask me where I was, which I would frequently get wrong. I pretty much always said I was in the Freeman when I was of course in the General.
They also gave me something to read - I guess to check both my eyesight and my ability to read. It was a really complicated piece of old literature, Dickensian or similar and I had great problems with it. Once, one of the nurses told me I needed to do better (cheeky cow), so I had a bit of pop at her and felt guilty about it pretty much straight away.
My brother Steve came in one day and we discussed the Newcastle match that had been the first game of the season, I think away to Nottingham Forest. I think the match was a draw but I couldn’t remember this at all. We also had a discussion about the football scores I had been reading in the paper. I asked him how the scores in each game were calculated. He looked at me slightly strangely and told me that it was to do with goals and whoever scored the most goals won. This was news to me but did strike a chord with me somehow.
I had also forgotten that Newcastle had been relegated in May to the Championship and this confused me as I read the pre-season summaries in the Times.
I was also a bit confused about when Keegan had returned and then what had happened to Jo Kinnear who had subsequently been replaced by Chris Hughton. This is probably the period that my memory struggles with the most and I suspect in retrospect that I was quite ill throughout this period.
Dad and Steve visiting me
I remember one particular visit when Dad and Steve came to see me and I was particularly confused about where I was. I was sure that I was in Burnley. I have a recollection of me saying that to them (or saying that they made good time to get here) and them looking at each other in a funny way. Some of the nurses (or at least one) were Irish and for a time I was sure that I was in Ireland. I don’t think that I mentioned that to anyone at the time
One day just after my surgery Rhonda fed me grapes like they were going out of fashion, one after the other, like she feeds the penny machine in the arcade. They were lovely and sweet but then suddenly the ‘grape overload’ button activated and out they came - all over Rhonda and the bed.
Going home for my birthday – cake, presents
They decided that it would be alright for me to go home for my birthday, which was just over two weeks after the operation. Anne, the ward clerk, made me a lovely birthday cake (chocolate I think) which I took home. I had already been warned about my appetite and Rhonda warned me about eating too much of it but we all had a slice once we got it home. I went back for a “bonus slice” when Rhonda was upstairs but she only bloody came down and caught me in the act red handed! She told me off and I had one of my “grumpy” moments when I suspect I asked her to “get off my back”.
Rhonda had made a fantastic banner “Welcome Home Daddy” which was hung by the front door for when I came home. One of the neighbours that we don’t know that well asked if I was back from Iraq which made me laugh.
I remember some of the neighbours looking out of their windows and seeing me and feeling a little self-conscious, but it was great to be home.
We were having an extension built over the garage and Rhonda had been updating me with progress while I was in hospital. A couple of times she brought photos on the camera in to show me. It was good to see the works being done, but I suspect it added to be confusion and I still remember what the works looked like, particularly the gap at the top of the stairs. They had started work the day I went into hospital so I missed the whole thing really.
While I was at home I began to feel some pains in my chest which were quite severe. I went to see the GP and he said that I needed to be in hospital straight away (unbelievable!) I actually had a pulmonary embolism in one of my lungs. It was extremely painful and I was prescribed Oramorph (oral morphine) to help me with the pain. This did seem to work. I was subsequently prescribed tinzaparin and warfarin to manage my blood. The tinzaparin had to be administered via a subcutaneous injection into my tummy. I couldn’t do this at first and when I was home at the weekend our next door neighbour Anne-Marie did the injection for me as she is a trained nurse. As we got more confident, Rhonda was able to do the injection and then subsequently I was able to do it myself.
Trying to come home – packing my bag
One day, I had really had enough of being in hospital so I decided to escape and go home. I packed a bag with my iPod and football magazines and went to the nurse’s station to tell them I was leaving, but that I did not know my home address. I tried to call Rhonda but could not work out how to use the phone so it was not a very successful attempt at self-discharge, all in all. For some reason, this episode made me upset for months after being discharged. I think it is because I realised how ill I was and in many ways, how my brain was so damaged that I couldn’t do even the most basic things like use a phone or find my way around a building.
On another occasion I tried to leave, without telling the staff, and they found me wandering around on the fire-escape.
Walking round and finding my room
One day I went for a little walk because I was bored. I didn’t leave the building, but went up and down stairs and onto different floors. I managed to get completely lost. I didn’t even know which ward I was on. I saw a door which had a name on it and would you believe - it was my name. When I peered round the door, all my stuff was in the room.
Going to Walkergate Park
Rhonda arranged with a specialist nurse at the General, for me to be transferred after a few weeks to Walkergate Park International Centre for Neurological Rehabilitation. This was seemingly the first time that Walkergate Park was mentioned, to my knowledge, and I wasn’t really sure what to expect. Rhonda had spoken to Sean, a Consultant friend of mine at Sunderland, for some advice and he had said that without doubt Walkergate Park was the best place for me to go for rehabilitation.
Walkergate Park is a fantastic modern facility. I thought of it as being Scandinavian in style, wooden floors and timber frame on the outside. It had a garden inside the main building quadrant, although I don’t think I ever went down to sit in it.
When I arrived I had a feeling that I had been there before. They share the site with the SHA and in the corner of the carpark is a small building with some SHA staff in. I had been there for a meeting when I worked at CHS, though I hadn’t actually been in the hospital before.
I had my own room which was very large, with my own wet-room, DVD player and TV and a couple of chairs, one of which was by a small writing table. I did spend a lot of my time in this room but as I got more confident, I would go for walks down to the shop to buy a paper and a chocolate bar and can of diet coke or Fanta zero.
My room had a TV which had the freeview channels on but I don’t recall watching much TV. I don’t think I had any interest in what was on. I remember watching one of the music channels regularly and every time I put it on, within five minutes, Muse would be on. Luckily I really like that song. I think they only played the same hand full of videos all day long.
The days at Walkergate Park were more structured and I had a weekly timetable. I had physio sessions in the small gym there and then some cognitive sessions with Doris, an OT. I also had some sessions with another OT called Doreen. Sometimes we would meet and I would throw a ball through a hoop or some other tasks to work on my dexterity. On other occasions we would play something like table-tennis, which I would always beat her at! Ha ha ha. What was interesting is that I could normally throw the ball through the hoop every time, but if she distracted me, even just by talking to me, I would miss the hoop frequently. Sometimes, we would go out and get a metro into Newcastle which was very exciting. We would go for a little walk and then grab a coffee in Costa or somewhere. On one of these trips I bought a small Newcastle shirt for Ben at the club shop which I was really pleased about.
Occasionally, I would go and sit at the nurses’ station and have a chat with them if I was bored. They were quite a friendly bunch and didn’t seem to mind me going to talk to them.
I ate my breakfast in the room – usually Weetabix with no sugar which is horrible and then a couple of slices of toast with Duerr’s orange marmalade on. Then I might go for a walk around or just read or listen to my iPod or something until it was time for a session. Sometimes I would walk to the newsagents down the road and get a paper and a can of something and maybe a chocolate bar. It is funny that I would always buy a paper but I don’t really remember reading them. I don’t think I had the attention span to sit and read it, but I think I liked the idea of finding out what was going on in the world. I knew that the newsagents were on the left, just off the main road down to the metro station. At first I wouldn’t be sure which way the metro station was. Was it left or right out of the hospital? It was right, but several times I made a mistake and went the wrong way and only realised as I got closer to the coast road. I was never sure whether or not I was allowed out of the hospital. Some people would stand outside having a smoke but there was never anyone to ask you where you were going so I would just toddle off to the shop. I sometimes felt when I arrived back at the ward that the nurses had been looking for me but no-one ever said anything.
If I had a gym session, they were about 30 minutes long. On a couple of occasions we ran round the perimeter of the hospital with Sue Raine. The gym sessions weren’t especially tough, even for me, then but at least I was doing something active. I would pull the bar on the rower and do some mild bench presses, but the weights were almost negligible.
I had some cognitive tests done there by a psychologist and they didn’t go very well. I struggled with all elements of it and, for example, couldn’t point to the end of a short straight line when asked (I pointed to the middle).
On the day I arrived they asked me if I wanted to have my meals alone in my room or in the small dining room with the other patients on Ward 4. I said I would eat with the others, which was possibly a mistake.
At mealtimes a nurse would come and knock on my door to tell me it was time to go along to the dining room. I would walk along on my own and the others would be there. One was a girl in a wheel chair who kept forgetting words. So, she would want the salt but couldn’t remember the word so she would just say “Can you pass the thingy”, and point to the salt. This would happen quite a lot during a conversation. Then there was a patient who was a young lad, who had been serious drug user, taking ecstasy, coke, heroin, the lot, on a regular basis. He had some kind of OCD and would frantically clean his chair before meals.
If the nurses gave him the wrong meal or something he didn’t like he would go mad. He would shout “What the **** is this ****” at the top of his voice. I remember he hated wholemeal bread and only liked white bread. He would shout “This is ****** wholemeal bread” and sometimes chuck it on the floor
All in all mealtimes were very depressing. I would think of what my friends and family were doing at that time and thought “I bet they’re doing something nicer than this”. Thinking about it, I barely spoke at mealtimes. I just sat there. There was no-one I could have a conversation with. They were the worst times and I really missed home then.
I went home every weekend which was great, but I used to have to go back on a Sunday night which I used to get down about - but just in a “Back to school” kind of way.
For a week before my discharge I was in a “flat” at the end of the ward. I had my own kitchen in the flat and was able to have my own food. Doris gave me some money and took me up to the supermarket and I bought some bits. One day I cooked a meal for Rhonda and she brought the children in. We had a spaghetti bolognese. Some people on the ward commented on how nice the smell was which made me feel pretty good about things. That is a happy memory.
Shortly after that I was discharged and allowed to go home permanently. Happy days!! Overall my memories of Walkergate are quite happy and I am very grateful for everything they did for me.
Looking back at my care as a whole I have a tremendous sense of humility. The fact that all these people whose names I can’t even remember looked after me so well, makes me feel very humble. I know it is their job but they do so much more than it says on their job description. I have no criticisms at all of any of my care, which could not have been better anywhere in the world, and I think I am very lucky to have been treated here, given the seriousness of my condition.
I am about three stone overweight which has pretty much been the case since my surgery. I do eat too much but this is partly because of the damage caused to my hypothalamus during the surgery and so I have difficulty knowing when I am full. I have not been able to lose any weight until very recently when I have taken my diet a lot more seriously. I was just over 16 stone when I left Walkergate Park and I am about the same now, but I increased to well over 17 stone by September 2011.
I now have Diabetes Insipidus which in essence means I am often thirsty and need to go to the toilet more often than before. Sometimes this is very inconvenient, but this can be managed by drugs, namely DDAVP (or Desmopressin).
I also give myself a daily injection of Human Growth Hormone (HGH), as this is another hormone I am not able to produce. This seems to help my general wellbeing and also my weight management and production of muscle.
I am pleased with my cognitive function, which showed when tested in April 2011, that I was in the top 5% of the population for many of the tests.
Tests of my memory showed that there is a problem with memory, particularly in respect of future events. Memory of past events is better but still not especially good.
I have had some problems with low mood and occasional episodes of crying in fairly routine situations. These have included crying after a family meal in Hexham, while walking back to the car with Mum, walking home, talking on the phone to Rhonda after my INR results were not great, watching TV in Crinan and on various other occasions. I had a little cry (behind my 3D glasses) at the cinema recently. We were there with both the kids and my mum and dad to watch ‘Dolphin’s Tale’ (not a classic but enjoyable all the same!!) and I think I had a feeling of how lucky I was and how far we had all come to be sitting in the cinema together like a bunch of (fairly) normal people having a good time.
I think I am less likely to be prone to this now as I think I have made some significant strides in the last three months. I feel emotionally stronger.
I have made a conscious decision to exercise more robustly going forward, as I don’t think there are any physical restrictions on the intensity of exercise I can undertake. I have completed the Great North 10k and last month I did a triathlon and I am incredibly proud of myself for doing so. I have some further running events lined up and am training very hard for them so hopefully my fitness is gradually returning.
I am managing my medicines well. In February 2010 I was sick and was unable to keep my hydrocortisone down. This meant that quite soon I became very weak and felt faint. When I tried to get back to bed from the toilet I collapsed and fell into Ben’s bedroom, smacking my head on one of his toys and cutting my forehead just above my right eye. I felt terrible. Rhonda called an ambulance. I was taken to hospital and think I was kept in for a day or so. I wasn’t given any hydrocortisone for a while. The Endocrinologist told me in future if this happens again, to take the injection of hydrocortisone straight away. (The injection is ten times the normal dose and will make me feel better straight away).
I was sick again when we were on holiday in Scotland but this time I was able to have a little rest and then take my hydrocortisone tablet and keep it down, so I felt better quite quickly.
Return to work
In March 2010 I returned to work after seven months. I went to work in Patient Services at a large hospital, where I had worked before my surgery. I was responsible for aspects of patient information, organising the review panel meetings, doing minutes and writing to authors outlining recommendations. I wrote some documents and developed my skills in “Easyread”. I maintained a database of leaflets and so on. It was a good return to work and went well.
My manager seemed to be pleased with how I did, which was very gratifying.
I started my current post, as Quality Standards Manager on 1st June 2010. In retrospect, this was less than 11 months after my brain operation and it was probably too soon. I had a lot of problems when I first started. I was duplicating files, losing changes, saving things in the wrong drive etc etc and it was very confusing. I was attaching the wrong versions of files to emails and all in all I was struggling to manage the role.
However, this has all improved considerably and at my last appraisal my manager agreed that I was making good progress and she had seen “massive improvement” in the quality of my work. I am hopeful that this can continue.
I also feel that I was quite paranoid and self-conscious when I took this post. I think people expected more of me because I had been a fairly senior manager, yet it was hard for them (and me) to realise exactly what I was realistically capable of. I thought people were talking about me and blaming me for things.
It is a more junior role than the one I had before my operation and as a consequence I am paid significantly less, but I am optimistic that I can return to work at a more senior level.
The Future - updated in 2017
When I was assessed by the Clinical Psychologist back in 2011, he said that although my memory would probably not improve, my intellectual ability was in many respects in the top 5% of the population. This cheered me greatly. He felt that my reasoning powers and IQ were more or less unaffected and if I could manage my memory, there should be no reason why I couldn’t return to a decent level of work. (The picture below shows my tumour before and after my surgery).
One of the things I wanted over the last few years was to prove to myself more than anything that my brain was still able to function at a high level. As a consequence I enrolled on a Masters programme at the University of Birmingham and I was awarded an MSc in Healthcare Leadership earlier this year. It was hard work and the dissertation in particular was very challenging, but I completed the programme and overall it was a very enjoyable experience. When I look back at my initial rehab in Walkergate Park in 2009 it is almost inconceivable that eight years later I would be awarded an MSc.
After several attempts I was finally successful in getting a more senior post in November 2017. To say I was pleased was an understatement. Although the salary is still lower than the one I was earning when I had my surgery, it is a big step in the right direction and it feels like at last my hard work towards recovery has been acknowledged by someone other than Rhonda! Getting this job has been great for my overall confidence and I think it has even helped me with my running.
I have also successfully established and co-ordinated a Pituitary Patient Support Group (North East). The group took a while to get going. The first meeting in 2012 attracted a handful of people but then over the next couple of years there was little interest and at one meeting in 2015 only one ther person turned up! However, since then things have moved on and I now have a contact list of over 45 patients and we usually get between 20 and 25 people at our meetings. We meet quarterly and where possible I try and arrange a speaker. I am pleased that it has grown as I was on the verge of giving up on it back in 2015.
I am still struggling with my weight. I acknowledge that I eat too much but it remains very difficult to manage. The damage caused to my hypothalamus during the surgery has had a huge impact. My weight in the year up to my surgery was around 12-13 stone but I am now closer to 18 stone. However despite this I am still able to exercise and my goal for 2018 (when I will be 50) is to see if I can run a marathon. I am still reasonably fit and I claimed Scafell Pike in August with Maddy and some friends from The Pituitary Foundation which was another pleasing day!
Overall, it has been a difficult journey, but hopefully the toughest times are past now. As a write this things are pretty good and I certainly don’t complain. I hope that if anyone reads this, who has been diagnosed with the same tumour as me, they will know that they can make a full recovery and lead a full, active work and family life, just as before. I am now as happy as I have ever been which seemed inconceivable in 2009!
Martin Crosby, 23rd November 2017