Tuesday 30 July 2013

July 2013 - progress update

Well as I sit here today, things aren't looking too bad. My main worry is still the status of my bad back. I've referred to this before but not in great detail, essentially it is the reason I spent a night in hospital a couple of weeks ago and had the MRI scan on my lower back, the doctors are worried I may have Cauda Equina Syndrome. I hope to goodness I don't have it, because it may need another operation and recovery time can be very long. I'm hoping it is just "too long spent laying on my back annoying some nerves" rather than anything so serious. I just have to wait for the consultant to call me back in to discuss, which may not be for a few weeks yet.

In terms of my general health, just for a change I've got another rash (blood spots actually) on my legs, the doctor thinks this is the result of skin damage from my leg/feet Edema (water retention) that I had when I came out of the QA Hospital. It has allowed blood to seep into pores of my skin where the skin got really streched. The doctor made me have yet more blood tests to make sure my blood is coagulating, but he is fairly sure the blood spots/rash will fade away when the blood gets re-absorbed. Lovely.

My stamina is gradually getting better, nothing that a few swigs of Lucozade energy drink or a nap can't cure anyway. I have been trying to get out for walks now the weather has cooled a bit and have managed some decent strolls, and it is 'stroll' too. Our walking pace is normally about a 16 minute mile, I'm down about 19-20 minutes at the moment. But the positive is that I am not 'crashing' like I was, and can actually be of some use around the house rather than just watching daytime telly.

The DI (Diabetes Insipidus) is being held at bay by the drug I'm taking, so sleep is getting much more plentiful although I am getting backache in bed (in a place on my back that only aches when I'm in bed), so the planned new bed we've been talking about may be closer than we thought.

I'm now far enough away from the operation that I am allowed to do some bending and lifting (not that I have been doing much of either because of the bad back) and I have finished the wretched nasal rinses as well, which I'm glad about. And I can drink through a straw should I so desire, which was also banned for 6 weeks after the operation. I celebrated this milestone by going to our local Costa Coffee outlet and having a Mango and Passionfruit blended ice drink, bloody lovely it was too - it felt so naughty drinking through a straw again. Well maybe not the straw bit, but the drink was really nice.

On top of all that, I'm returning to work next week, so progress indeed. Let's hope this is a return to normality, and subsequently once my hormones are sorted out, something to look forward to.

Thursday 25 July 2013

July 2013 - booked me an important test!

So I had a telephone appointment with the Endocrine Nurse Specialist (Jean) today to catch up on my progress, I last saw her 2 weeks ago when I was still really not well. Luckily today, having made some progress in recent days, I was able to report several positive things and she has booked me a 'Short Synacthen Test'. That said, she was still cautious about my progress, making sure that I am not overdoing it in my quest to get back to fitness, she reiterated her belief that 6 months is a reasonable length of time to get me all sorted out.....still seems too long to me :-) (but I was grateful for the honesty, it is what I needed and Jean seemed to know what she was talking about)

The key thing I knew she would want, and I made sure I had achieved, was getting my Hydrocortisone dosage down to the 'normal' dose, unless I did this then the Synacthen test could not happen. So my target for the last 2 weeks since I saw the nurse has been get these tablets sorted. It worked, and I got my test booked - back of the net.....

This test is my kick off for the hormone balancing act that needs to happen to get me on the road to full health. To fully understand the delay my 2nd trip to hospital had on this process, my original Synacthen test was booked on June 24th, but I was in the QA Hospital in no fit state to attend the test. The new test is Tuesday 20th August, so my unexpected illness has put a TWO MONTH delay on my getting this test, what a disaster. No wonder I am getting impatient! 

So I will be counting down the days until I can get this test, and more importantly the results. Not that I am exactly looking forward to the test itself, canula inserted, drug injections and numerous blood tests, hrmph. But, until the results are known none of the other hormone balancing can take place. My production (or indeed non-production) of Cortisol is the key measure the 'Endo' team need to set my base Cortisol levels. Once that is done, some real progress can be made, or lets hope so. They won't even consider looking at my other hormone levels until this test is done, which is a shame.

What I really need to ensure is that I do not under any circumstances get anything else wrong with me between now and that test, because I really cannot stomach another delay to this process. I still cannot believe that it will be a 2 month delay to take the test, just a testament to how hard the infections hit me I suppose, but it is very hard to accept.

So, today was a good day, I've got my Synacthen Test booked!! Whatever you achieved today, it was not as epic as this, I guarantee it.

Tuesday 23 July 2013

July 2013 - Hospital and a SmartPhone

I was sitting here just now thinking back to my hospital stays, and how different it is now compared to only a few years ago. When mobile phones were still very new, hospital's kept the phones and their delicate equipment at arms length..."you can't use that thing in here". I'm really not sure what changed, or when it changed, but I'm very glad it did. In fact I didn't realise you could use your phone in your hospital bed, I asked a nurse if it was OK, and she was like "of course it is". But then whilst having a mobile phone that you can use in hospital is invaluable, having a SmartPhone you can use in hospital is an absolute godsend and cannot be underestimated.

I remember when they used to wheel a telephone between beds so that patients could get in touch with relations, or else you were reduced to phoning the ward and asking how your friend/relation was getting on. But now calls and texts can happen whenever you want, updates on progress, a quick text last thing at night to wish each other a good nights sleep, or a 'Hi' first thing in the morning, news from when the doctors visit....all so much easier with instant communication anytime anywhen. It was also really easy to email friends and family to give them 'live' updates on how you are doing....the downside of that is content and grammar do go down the toilet somewhat as a tired and irritable Carlton types away on a small keyboard with predictive text doing its best to skew the words you are trying to type. I was going through the 100's of texts I exchanged with Deb whilst I was in hospital and it has to be said not all of them made brilliant sense - perhaps that is usual though.

In the QA Hospital in Portsmouth they have these TV screens by each bed in the ward that you can pay an arm and a leg for to watch TV and listen to radio, but with a SmartPhone you really don't need to pay out for that. You have a mobile device that allows you to watch TV (TVCatchup, iPlayer, ITV Player 4od etc.) listen to the radio (TuneIn Radio, Spotify) or your own music loaded onto the phone, catch up with the daily news (Google Currents, Flipboard, BBC News, Twitter, Facebook) play games and of course surf the Internet and Google all those ailments the doctors tell you about (of course as mentioned previously, I'd never get drawn into Googling my ailments). You can even go shopping to brighten your day (Ebay, Amazon etc.). I also found it really useful for taking notes to remember things, my brain wasn't in tip top shape so I would be awake at 3am and suddenly think of something I wanted to ask the doctor or my wife so I used Google Keep to write out notes to help me remember. I think the doctors thought I was slightly mad when I whipped out my phone and started asking questions off the screen, but it helped me in the moment.

So in short, if you find yourself in hospital and you have a SmartPhone, it will help you. Just make sure you have your charger with you, there are plenty of power sockets tucked away behind the bed, and the staff don't mind you recharging your phone in them. If you have an HTC One X like me, it will be plugged into the power an awful lot.

Saturday 20 July 2013

July 2013 - another MRI scan

So today (20 July) I went for another MRI scan, this time on my lower back. It is the follow up to the one night hospital stay that I had last week. Having been so keen to admit me to hospital last week I was expecting a quick date for the scan, and indeed yesterday I got a call to go in today for the scan. If you've ever been for an  MRI scan, you'll know what to expect and so did i this time, mind you last time I only had my head scanned so I wasn't very far into the machine but this time I was all the way in....it is so noisy in there. But at least it was all over inside 30 minutes.

So now all I have to worry about are the results. With my run of luck they are going to ring me up and tell me i need an operation, but I truly hope that they find nothing more than a few annoyed nerves which will heal themselves. I couldn't face another operation, I really couldn't....so I have another worry burden for however long it takes for the consultant to come back to me. I really need him to get back quickly, so that if all I need to do is go to a chiropractor then I can get on with it, because this bad back is hampering my progress, as I am scared I will damage it further. But will have to play the waiting game.

Otherwise I have had an ok couple of days, still getting tired and running out of steam quickly, but did sit out in the garden with a pear cider earlier , which was nice.

Wednesday 17 July 2013

People - thanks!

I'd like to thank everyone who has wished me well over the last few weeks, it makes you realise you aren't alone.

Emails, phone calls, texts, 'get well soon' cards (I've quite a few now) and neighbours asking after you all warm the heart and make recovery just that bit easier. My work colleagues even clubbed together to get me a magazine subscription and my wife some lovely flowers, totally unexpected but so nice to receive.

So thanks again one and all for thinking of me when I'm laid low - I do appreciate your kind thoughts and words :-)


July 2013 - yet another trip to hospital

It is almost unbelievable to imagine I could end up in hospital again after all this, but I did....last Friday night Saturday 12th/13th July 2013.

On Friday I went to the doctors to get another sick certificate as I was clearly still not well enough to return to work. I mentioned my bad back whilst I was there, I have a 'reduced sensation' spot near my Coccyx and a tingly feeling down my left leg and my foot a bit numb. The doctor really perked her ears up when I said this, and she seemed to take it very seriously. So much so, she said she would ring Southampton Neurosurgery unit for some advice and ring me later.

She did indeed ring me later, Southampton wanted to see me and do an MRI scan - right then this evening. Good lord.

So in we trooped to get to exactly the same ward and unit that I had my Pituitary surgery in back in May, a bit spooky to be returning so soon. So I checked in at reception, "oh yes Mr. Hall we have your bed ready".....my bed ready?! I was astounded. A slight gap in communication it seems, but not only did the hospital have me as an urgent case, they were prepared for surgery the next day depending what the MRI scan showed. Essentially what they were worried about, was that I had trapped a certain set of nerves by my Coccyx, that if it all went wrong would leave me double-incontinent for the rest of my life. So despite protestations to the contrary, Deb left me about 1am to be yet again in D-Neuro ward. I had all the usual interruptions during the night, Obs, blood tests, questions and more questions. I was 'nil by mouth' in the morning, just in case of needing an operation.

So in the morning a doctor turns up, he seemed a bit puzzled. "Have you had an MRI scan he asked", "no" I replied. He said, what about the shooting pains in your legs, on a scale of 0 to 10 how would you describe the pain, I said "zero", I haven't got any pain....and I never said I did. Off he went. A while later, a gaggle of doctors returned, and I fully described my discomfort and how it came to be. Well it seems the lack of pain, and ease of movement swung it for the consultant. In fact the consultant said I didn't need to be in hospital, he would book me an MRI scan as an outpatient just to check nothing was untoward and I could go home. So Deb picked me up about 1.30pm and home we went. Another hospital scare I could have done without....unbelievable.

July - starting that recovery again

Early July......
So now we are into the current month, I've finished my second stay in hospital and I'm back home. Suddenly the way forward does not seem at all clear. In plan A, I would have been well on the road to recovery and had some tests I needed to get my hormones on track. But now in plan B, I'm too ill to even consider taking these tests and I need to get better fast in order to get back on track. But I've no energy, no appetite, fluid retention legs and feet and really all I'm fit for is sitting and laying down trying to fix the immediate problems. Added to that, nothing tastes right, my mouth is always dry and what appetite I do have is for odd things.

So the first few days back at home aren't really very happy one's as I come to terms with being much more ill than I started, and impatient at the delay caused to getting back to normality - I must be driving my wife mad by now - but if I am she's not showing it. What a star she is, and in fact there is no way I'd have got through all this without her, nursing me, helping me, talking things through with me, driving me everywhere. She did mention that I was stretching the marriage vow "in sickness and in health" a bit, but otherwise with all the other things we have on our plate right now, I couldn't have asked more from her, and in fact the point was I didn't have to ask most of the time, she just did what I needed.

Current....
Bringing things right up to date, I weighed myself yesterday, just a shade under 10 stone. I haven't been that light since I was at school, and everything I've lost is muscle. I know that people would be more than happy to shed almost a stone in weight as easily as I have, but I really want mine back, and the only way I'm going to get it is start to exercise more, and with it being 30 degrees outside, that means armchair aerobics. I look like a right idiot but a sit down cycling machine, resistance bands and a stepping machine will have to do for now. I've actually been feeling a bit more fit the last couple of days, my tingling foot and coccyx have eased a bit which makes getting about easier, and my energy levels are up a bit. My appetite has also fully returned, which has got to be a good thing. So as I sit here and type this, I can be more positive again and hope against hope that I get no more setbacks to my recovery.

I need to reduce my dose of Hydrocortisone back to the normal level (which I can't do before I am sure I'm not fighting any more viral bugs) before the Endocrine team will consider putting me through the tests I need, so I have a vested interest in getting better quickly.

Monday 15 July 2013

June 2013 - another trip to hospital

A very bad period of my recovery was on its way, and as it would turn out it would set me back weeks in my quest to get better.

One of the things you are told to look out for during your recovery is a leak of salty tasting fluid from your nose or down the back of your throat, it could be CSF (cranial-spinal fluid) from your brain leaking out of the operation site. If this happens it means another operation to go back in and seal the leak up. On Tuesday 18th June, I thought I had developed a CSF leak, as down my nose came this yellow liquid, and it kept on coming....and coming.

So we phoned the Wessex Neuro unit and were told to come in right away. The liquid was collected and sent away for testing. The consultant was hopeful that in fact this was not a CSF leak, in patients like myself I was tested during surgery for a leak and none was found. In cases where no leak is present during surgery it is highly unlikely that a CSF leak with happen, but if you have a CSF leak during the operation then it is more likely you can spring a leak again later. So although good news on that front, what was this yellow liquid coming out of my nose. As it turns out, it was the beginning of Sinusitis and indeed the beginning of quite a few infections that would run riot through my body, included Pharangitis and a hefty dose of sickness and diarrhoea. In fact it was the sickness that did for me, because I could not keep anything down and more specifically I could not keep my Hydrocortisone tablets down. These are my life blood, and without them I cannot fight infections, as the body would naturally inject large amounts of Cortisol into the bloodstream to fight such infections. Although I didn't know it, I was on a downwards spiral to hospital.

On June 22nd I was admitted to QA Hospital Portsmouth with Adrenal crisis, partial renal failure and in a "very poorly" state according to the hospital report. I really don't remember much about that day, when I ended up in the Medical Assessment Ward, on loads of IV drugs and catheterised because I was barely conscious. It took 3 days of two types of antibiotics (oh no, not them again!) and gallons of IV fluids to stabilise me. I got there in the end, but I was very weak and had no appetite. My mouth was so sore due to infections in the mouth and down my throat I could barely stand anything to eat, and wasn't sleeping at night because it was just too noisy....and I had the DI at this point too.

Then to add insult to injury I wake up one day to find my legs are tingling and are absolutely huge, I have fluid retention in my legs and feet, I look like I have elephants legs and it really scares me. But the doctors say not to worry, it is quite normal and once I get home and start moving about, the fluid will get moved out of my legs and back out of my body, it is a side effect of having so many IV fluids pumped into you and then not moving for 5 days.

I finally came out of the QA Hospital on the 27th June, much the worse for wear. I really didn't enjoy my stay at the QA, I felt it was nowhere near as well run as D-Neuro in Southampton and my state of heath was so poor, I don't think I had ever felt worse.

So I sat at home and cried, I was at my lowest ebb. Not so long ago I had walked 2 miles home and my recovery seemed on track, then in a whirlwind of illness everything seemed to turn on its head, how would I ever get better now? It is a question I am still asking today, but back then it was very dark. I spent day after day at home laying down, no appetite, still with giant legs and feet and barely any energy. 

After two weeks out of hospital, my fluid retention had indeed gone, but the tingly sensation in my bottom and foot and down one leg had not, and it was making getting about rather difficult. My appetite was beginning to return a bit now, but I've lost getting on for a stone in weight and if you know me, you'll know I didn't really have that much weight to lose. What I've lost is all muscle tone, getting around is hard, and I really need to start to build some muscle and stamina. God knows how, when it is 30 degrees outside. As I said, very dark days for me, but there has to be an end in sight, doesn't there?

June 2013 - Diabetes Insipidus

Its name alone strikes fear into me, Diabetes "Insipidus" (DI). Essentially what this disorder does ( http://en.wikipedia.org/wiki/Diabetes_insipidus) is make you want to drink a lot and pee a lot, usually at night time. It is a side effect of having the Pituitary surgery, as the gland is bashed about during surgery it can set it off. I first had DI in hospital and they gave me an injection which stopped it dead, and I hoped I'd seen the last of it, but it was not to be.

I gradually started losing more and more sleep during late June as I got up every hour for a pee, and had to take a 1 litre jug of squash up to bed with me to drink during the night. If you don't drink in what you pee out, then you get horribly dehydrated (my body would pee whether I drank or not). So my recovery was in jeopardy due to chronic lack of sleep, you really cannot imagine what it is like to just keep waking up hour after hour going through the same of pee-drink cycle. I spoke to the Endocrinologist team hoping they would help me, but they said it was probably just a 'transient' episode of DI and it would pass, but it didn't it just kept on, and I was getting desperate.

In the end during July, I got an appointment with the Endocrine team again and persuaded them to prescribe me Desmopressin tablets, which stops DI in its tracks, but it is a scary drug because it stops the kidneys producing urine and it means that you have to be careful how much you drink whilst you are under the influence of the drug. I have been on the drug a few weeks now, and it really is miraculous the effect it has it just works. I have had some blood tests which show my body is just about coping with the effect of the drug, and I will have to have regular blood tests to make sure it stays that way.

What should happen is once the Pituitary gland calms down from the operation and the rest of my hormones are balanced, everything should go back to normal. But I couldn't have hourly wake up calls from now until whenever things go back to normal. So I am happy I'm on these tablets, but also a bit nervous that the Pituitary does indeed go back to normal. You cannot underestimate how confusing all this has become....when things were normal you just drank and pee'd, essentially if you drink too much your body gets rid of what it doesn't want...you don't even think about it. Now I have become a bit obsessed by how much I drink and pee, and it is something I really don't want to be thinking about, and with the weather up at 30 degrees right now of course you are bound to drink more, and this just compounds my worries and confusion. The advice is straight forward enough, if you are thirsty follow your body's urges and drink. So that is what I am doing and so far so good. Trust me you don't want anything to do with DI, it really ruins your day, and it is another thing I want rid of in the near future.

June 2013 - making progress

So, things are starting to bob along nicely. OK so I have an unsightly rash, but I have started to get some sleep and relaxation and the operation is starting to seem a world away. The weather has bucked up a bit and is really quite nice. Having been at home a couple of weeks, I am ready to start going for walks and building myself back up again fitness-wise so I can face the world and look to get back to work.

So I decide to take the bus into Portsmouth and meet an ex-colleague, it might not sound much but to me it was quite an adventure. A Pituitary tumour is a notifiable event for the DVLA which means you have to tell them you have one, and it means at least 3 months not being able to drive whilst they assess you. So a trip on a bus is the only alternative, not something I do very often. In the event, the trip into Portsmouth and back was uneventful and although I was a bit tired by the end of the day, I was hopeful that this was my recovery getting into full swing.

A couple of days later, I go with my wife to the doggy hydrotherapy pool, and whilst she is there, I walk back home a grand total of nearly 2 miles which pass by quite quickly considering I was only meandering along. I was very chuffed with myself, and again the recovery looked like it was on track. I spoke to the doctor during that week who also seemed optimistic but urged caution, as it was still only 3 weeks since I had had a major operation.

But little did I know that lurking around the corner was major illness, and Diabetes Insipidus (again).......

June 2013 - the first hiccup

When I was discharged from hospital, I had the biggest green bag of medication I had ever seen. Principle amongst the host of stuff was Clarithromycin Antibiotics, and a Nasal Rinse.

I haven't had that many antibiotics in my life, but I wasn't that bothered about taking them. You have to take them because of the damage to your nose done by the operation...the surgeons don't want all the mucky things that live up your nose causing infection near the operation site, it can give you Encephalitis or Meningitis amongst other things. So it was with some alarm when I noticed a bit of a rash on my skin one morning. This rash soon turned into unsightly big purple blotches nearly all over my body. A rush visit to the doctors confirmed that I had developed an allergic skin reaction to the Clarithromycin and I had to stop taking it straight away and the doctor prescribed a new antibiotic, Doxycyclin, that I had to keep taking. But guess what, I reacted to the Doxycyclin as well, which came out in round red itchy blotches. I looked hideous and was scratching like mad, and this went on for a couple of weeks. In July the final part of the skin rash puzzle came together when all that rash-y skin started to peel, and all of my arms and torso and some of my legs started peeling off....I looked like a bad attack of sunburn, but without any sun. As I sit here today (15 July) my fingers have started peeling, seriously if you saw me coming towards you, you'd give me a wide birth, I really don't look good at all. Hopefully this will finish soon, because I am sick to death of it.

Then onto the nasal rinse, you have to do it for 6 weeks. Basically it is a saline solution that you mix up, pop in the microwave to warm it up a bit, and shoot it up your nose... it is this stuff Nasal Rinse 

At first, it takes a bit of getting used to, you put the nozzle in one nostril and squeeze the bottle, and it shoots salty water up one nostril and down the other...or out the back of your throat. It really isn't pleasant but you have to do it for 6 weeks after your operation to clear out your nasal passages of congealed blood to make sure infection doesn't set in (after the antibiotics have finished) so as you squirt this stuff up your nose, all kinds of bloody mucky nasty stuff comes out of your nose. A necessary evil I suppose.

So there you go, recovery has started, setbacks regarding hideous skin rash....but no tumour any more. But at this point I really couldn't say I felt any better or any worse than I did before, it was praying on my mind exactly whether my Pituitary gland would ever work again, or would it fire up and do it's thing. I was impatient to find out....


May 2013 - hospital release

It was with mixed feelings that I finally got word that I would be discharged from D-Neuro ward that day. On the one hand I couldn't wait to get home and start recovery, but on the other a lot had happened in the last few days and you knew that if something went wrong with you, the staff were always on hand and so knowledgeable as to what to do. So I knew I had this recently operated site in my head that was really delicate, and so much I had to be careful of, going home was a bit daunting. But after a final barrage of checks and tests, off I went waving goodbye to the staff. The date was Friday 31st May 2013.

The drive home was a bit nerve racking, somehow the world seemed a different place than it did just a few days before when I was admitted....all loud and bright. Of course it was the first time I'd even stepped outside in days. Home at last.

Now at this point, sat in my front room finally resting, I could have only imagined a few weeks off work whereby I would get stronger, have lots of tests to get my hormones balanced and within a short while feel a whole lot better. This was pretty much what I was promised by the consultants...have operation - remove tumour - test Pituitary gland - replace hormones - feel better...all fairly quickly. Compare that to a conversation I had recently which went more like "it can take 6 months and be a rocky road" and certainly the latter feels much more realistic. 

What I didn't know sat on our (brand new leather) sofa was that my recovery wouldn't in fact be at all straight forward and would indeed take several turns for the worst. But what I was really looking forward to, was a night in my own bed in peace and quiet. That is what I got and boy did I have an epic sleep. Another thing that I shouldn't get used to just yet.

Saturday 13 July 2013

May 2013 - the hospital stay

When I came to the next morning the state I looked became obvious. I had a massive thick bandage on the end of my nose, and two thick packing cotton things up each nostril (a bit like tampons). In order to perform Pituitary surgery, they go up the nose with cameras and tools and then in through the skull into the brain cavity. It is a clever idea and avoid cutting a big trap-door in your forehead. But as I came to find out, the nose is quite heavily damaged....but ultimately preferable I suppose.

One thing I missed out from the previous post was that after I came back up to the ward, I had a very serious nose bleed, massive amounts of blood lost from the operation site. It happens apparently, and copious amounts of ice applied to the area eventually stopped the bleeding, but it was a very worrying time to have blood flooding out of your nose and down the back of your throat. It even prompted the registrar to call the surgeon that performed the work at around 11pm just to check everything was going to be alright. He seemed certain it was....but I lost a lot of blood that night.

Lots of things I can't do now, have hot meals for starters, no drinking out of straws, no bending over, no heavy lifting. So stuck in a hospital bed, not being able to breathe through your nose and feeling pretty miserable. The staff on D-Neuro were the real stars, the ward was run like clockwork and was kept very clean and tidy. The drugs and food all turned up like clockwork and sitting with nothing else to do but watch the world go by, you realise just how much nursing staff earn their wages. They were really very good to me.

One thing you don't get very much of in hospital though, is sleep. So many noises, bleeps, alarms, buzzers, interruptions for observations and of course people in a poor state of health needing 24/7 care....many in a far worse state than me. I hated not sleeping, because it is the one thing I needed loads of. Never mind, I figured I wouldn't be here for ever!

After a couple of days it was time to take the packing out of my nostrils, the packing stayed in an extra day because of the massive bleeding I had before. So out they came along with lots more blood. In fact one of my nostrils bled all day, not as badly as the major bleed, but trickling out most of the day....more ice on order. Eventually it did stop, but throughout my stay kept on starting again, it was most off-putting. However it did at least make my nose a lot more comfortable, because it wasn't jam-packed full of cotton wool and nasty mess. Finally I'm making some progress, and I don't look so stupid with this massive cotton wool 'bumper' on the end of my nose. The end of my hospital stay was in sight!

May 2013 - The operation day

So, Tuesday 28th May turned out to be the day. I didn't know when during the day I would be 'done' but I knew today was the day. I had the dreaded 'nil by mouth' sign by my bed which meant I could only sip a bit of water until my time came. As the day wore on, I became quite dehydrated, which would prove difficult because as everyone knows, when you are dehydrated blood veins become very hard to find, and mine were on the run.

Inevitably after so much waiting at around 3pm, suddenly a pair of anesthetist's appeared ready to wheel my bed away. I hurriedly changed into my gown, had a pee, and that was it I said goodbye to my wife and was being wheeled in my bed through the hospital. The next bit of the story will remain in my head forever.

They wheeled me into the anesthetists room and they immediately began work on trying to get canulas into my veins to get the anesthetic into me. I was starting to panic and my body was shaking, they failed to get the first canula in and switched hands to try the other. Clearly they were struggling, and I carried on panicking. Bizarrely they started asking me about where I worked and what I did, between my shaking I tried to explain and as I was doing so, my world short cut to this head looking down at me saying my name.....it was about 4 hours later and I was in the recovery room after the operation. I still struggle to believe the instant feeling of being transported from the panicked state I was in whilst they were trying to prepare me, to "that all folks". I'll never forget the face of the woman who was staring down at me saying my name [to wake me up] although I never knew her name. 

Strangely I was still shaking, and they asked me if I was cold - I didn't think I was but they put this air blanket on me and warmed me up and it did help. It felt like I was in the recovery room for about 20 minutes but in all I was there nearly 2 hours. Finally they wheeled my bed back to the D-Neuro ward and back to my wife who was waiting for me after all those hours. I don't remember saying this, but she assures me as I was being wheeled to where my bed would rest I said "that's my wife over there", in a rather soppy and slurry state.

So I'd made it through the operation, as it turns out the surgeon was sure he got pretty much all of the tumour although that won't be clear for a few months until I have another MRI scan. So operation over, but journey only just beginning!

Friday 12 July 2013

May 2013 - First night in hospital

As I said, I've never been in hospital before, so what followed was probably standard fare for all you seasoned hospital pro's. Having waited around to be admitted it was nearly 10pm at night and the staff in D-Neuro were clearly run off their feet. Anyway, I duly sat down with a nurse who asked me a thousand questions, and before I knew it, I had the plastic identity tag around my wrist, this was getting pretty real now.

At around 11pm I had the scariest conversation in my life, a very efficient Registrar named Sheila came to my bedside, and laid out the surgery in the most gory and percentage detail. "There was less than a one percent chance they could cut through one of my carotid arteries whilst removing the tumour, this could mean death", "there was less than a one percent chance that they could sever my optic nerve", "there was a one in 2 million chance that they could give me infected blood if they had to give me a transfusion to save my life"....the list went on. Of course the whole purpose was to lay out the risks of the operation, and to get me to sign a consent form. Sheila was lovely and was only doing her job, but at 11pm at night on your first ever night in hospital it is a lot to take in. Of course I did sign the consent form, and at that point, my wife left me on my own at the mercy of the hospital staff. Who I have to say, were brilliant.

All through the night, more interruptions came, this was a bit of a rush job after all. Chest xray about 4am, long talk with doctor about medical history about 2am, wired up to a ECG machine about 1am. Blood tests at some point and of course the obligatory regular 'Obs checks'. By the morning I was exhausted and had no sleep whatsoever, but the operation was all I could think about and it wasn't very far away now. Or so I thought.

In fact, although I was put on 'nil by mouth' that night, there was a complication. Important as my operation was, several life or death cases had come in overnight and that meant that my planned operation was not going to happen that day after all. So in fact I got day release from the hospital to go back home, and report back on Monday evening, which I did. It was all rather bizarre, although I was glad to be temporarily out of hospital. But that evening back I went and settled in for another 'nil by mouth' night. When the morning of Tuesday 28th May came, I knew this was the day and frankly (to use a British term) I was 'bricking it'.

Thursday 11 July 2013

May 2013 - an unexpected call

So after that fateful Friday (which was also our wedding anniversary), when we found out that I had a Pituitary tumour we kicked off a bank holiday weekend, and incredibly we were facing a lovely sunny weekend. My wife had grand plans for us to do a mega-weekend of gardening and I was looking forward to a relaxing 3-day break. Saturday went to plan and we had sat down to our traditional pizza Saturday dinner when at about 7pm the phone rang.

"Hello is that Mr. Carlton Hall" said a very serious lady on the phone. Well yes it is I replied. "Has anyone spoken to you today about coming into Wessex Neurological Unit tomorrow for an operation on Monday" she casually asked. I nearly dropped the phone in disbelief, I had the phone on speakerphone, my wife was equally shocked. I asked her to repeat what she said, and in the end I pursuaded her to get the registrar to ring me to explain further.

The plan that had been initially laid out by Dr. Kar was following the confirmation of the tumour, which incidentally was almost guaranteed to be benign, was that I would get an appointment with the surgeon who would outline the risks and benefits of the surgery and ultimately get an appointment to go to hospital. I hadn't planned for this to happen within 24 hours of seeing Dr. Kar.

The registrar duly rang me back about 8pm and explained that because of the impact on my optic nerve the surgeon had decided that immediate action was required to save my sight. It seems odd looking back on it now, but my wife and I were really put out that our planned relaxing bank holiday weekend was going to be ruined. In fact, what was happening was the NHS swinging into action to get me fixed up, and of course we realised this and accepted their appointment.

So at 8pm on Sunday 26th May, we walked into D-Neuro ward at Wessex Neurological Unit at Southampton General Hospital. What followed was a very scary few days for me, my first stay in hospital and what did I go in for, a bit of light brain surgery. Yikes!

May 2013 - Diagnosis

So having made it through the perils of Googling, blood tests, "is it this or is it that", I finally got a referral to an Endocrinologist at Portsmouth QA Hospital, Dr. Kar. I'll say this now as I didn't realise quite how I would come to respect him, but Dr. Kar is truly "epic".

I went to see him at our local community hospital at a clinic, and the results he was looking at led him to believe it was most likely I had a Pituitary tumour. This was because several areas of my body were affected, and the Pituitary was like a 'master send' gland which controlled so many things. He was going to send me for an MRI scan which would tell us for sure what the answer was....for once it was a test I thought I could cope with, how difficult could be be to lie on my back in the middle of a big machine.

So on Saturday 18th May, off I went to Portsmouth QA hospital to have my scan. It went well, almost. I mentioned my hate of blood tests, which extends to injections and needles. When in the middle of the scan the nurse came over the intercom and said "I'm just going to inject you with a contrast die is that ok?" Well what choice did a man have, in the middle of the MRI scan, I could hardly say no. Blooming well stung it did, but anyway I just told myself to "man up".

I saw Dr. Kar the following Friday to find out the results of the scan. With a huge amount of trepidation we sat down and Dr. Kar swung his computer screen around and showed me some bizarre almost alien like pictures on his screen, they were of the inside of my head. In almost slow motion I heard him saying about, and showing me, this peanut casing sized shadow in the middle of my skull and how this showed it was definitely a large Pituitary tumour. He also showed me a white ribbon like structure that was my optic nerve, it was being badly squashed by the tumour.

About that last bit, I had been having some visual disturbances in my left eye, that I couldn't quite put my finger on. I knew something wasn't right, but as it turns out one of the most common symptoms in the later stages of a Pituitary tumour is visual problems. As the tumour gets to a critical size, it can impact on the optic nerve squashing it. Ultimately if nothing is done, blindness can occur. Luckily it hadn't got that bad with my eyes, but Dr. Kar explained that once impaction has started, damage can occur quickly and be permanent. Worrying.

So we left the room, happy that a firm diagnosis had been made. What happened next was most surprising, shocking and showed the NHS in a very good light.


March 2013 - Googling!

March 2013 - Googling!
So having visited the doctors and got some information, what's a man to do. It is one thing to do to be chatting to your friends and family about something and you suddenly remember some old TV programme you used to watch. You all whip out your smartphone or iPad and Google the answer you were trying to remember....oh how you laugh when you remember that old TV episode you watched when you were younger.

What isn's so clever is when you think to yourself, "so I wonder what I could have wrong with me, let's have a Google". I knew I shouldn't be doing this, because the scope of what you can find on the Internet is just too wide, but this didn't stop me. The range of tumours and diseases I could have seemed endless, and the type of Pituitary tumours, adrenal tumours (which were still an option at this point) and other conditions such as Addisions Disease really scared me.

There really is an obvious answer and I knew it, put Google down! I did, but not without scaring myself first, I chatted this through with my wife who of course told me what a plonker I was for looking on the Internet in the first place. But it really brings home the information we have at our fingertips now, and also how important it is to rely on the medical profession to do their thing and work rigourously through the facts of the tests they were doing. I eventually sat back and waited on what they would find. This took us through March and April 2013. Waiting, don't you love it.

Wednesday 10 July 2013

February 2013 - when it all started

February 2013. 
I go to the doctor for some reason or other, but I mention that my once hairy manly legs are now bald, is this anything to worry about? She thought not, but ordered a blood test anyway.

I hate blood tests, so dragged my heels for a couple of weeks, but I had the test anyway about 11:30 and thought no more of it. I was at work the next day about 10am, when my work phone rang, it was my wife. "The doctors surgery have been on the phone about your blood test" she said, there was me thinking blood tests took a week to come through. "They want to see you today". 

Well that was my day ruined, by the end of the day, I had imagined all kinds of horrors that had been found in my blood for them to be so desperate to see me. So off I went to see the doctor at around 5.30pm. "You've got very low adreno-cortisol levels" he told me.....well that meant a lot. What it actually meant was that it could send my blood pressure very low and cause me to pass out, and it meant that my adrenaline glands weren't producing the correct level of hormone by themselves, so I needed to take hydrocortisone steroid tablets to supplement what my body wasn't doing. It was all rather sudden, and I didn't really take in what it all meant.

The doctor said he would need to do many more blood tests (great!) to ascertain what the problem was, and refer me to an Endocrinologist.....whatever one of those was. Endo what, didn't know there was an Endocrine system. I know a lot more now, and between that fateful day in February and the following weeks, a pendulum swing of "it could be this" and "it could be that" ensued. One thing was for sure, I didn't like the sound of any of it

Introduction

10 July 2013
Well, I'm not really sure where to start......How about the Pituitary Gland (www.pituitary.org.uk). We've all got one, and probably haven't really given it much thought. It is located in between your eyes at the base of your brain, and although this tiny little thing is fairly insignificant in your body, it does a lot of things. In my case, for many years, it hasn't really been doing quite enough....so it decided to grow a buddy to keep it company, a lovely enveloping tumour. I found out about mine recently, and had to have the tumour taken out, it has been one hell of a ride, so I thought I might try and blog about it, and see how it works out. Probably boring as hell.