June 2014 - Anniversary of 2nd hospital visit

Not so fond memories of a year ago today, as described in this blog post

At the time I had just started to come through what I thought would be the worst bit of the whole Pituitary tumour saga and was just about to find out that actually I could feel a whole lot worse. I didn't know about the words 'Addisonian crisis' or 'Adrenal Insufficiency' and looking back on it that was a shame because maybe I could have avoided another stay in hospital, who knows.

Before last May (2013) I had unknowingly spent many years coping with a lack of Cortisol, as it gradually reduced over the years due to the tumour. This gradual ebbing away did present some symptoms but I didn't recognise them and slowly but surely my body acclimatised to the levels of Cortisol in my body. Finally I was diagnosed as having very low Cortisol levels and was prescribed the Hydrocortisone to replace my natural source, and it made a big difference to me. Now I was in a position of being on the correct level of hormone and my body would then not cope with a sudden drop, which is what happened when I got very ill back in June 2013. Sickness and diarrhoea saw me unable to absorb my Hydrocortisone tablets and that led me to have an acute Adrenal insufficiency - my body could not cope with the lack of Cortisol and the resulting lack of immune response and the inability to cope with the stress of the infections I had contracted, led me straight on a collision course with a hospital stay.

I now recognise that this cannot happen again, and have strategies in place to make sure that I have an emergency injection of Cortisol with me and know only too well what to expect if I ever have an Addisonian crisis again. Let's hope I don't.

Looking back, it is a shame I wasn't warned about the danger of adrenal insufficiency. I do remember seeing leaflets that informed people about carrying cortisol injections, but I was told I didn't need these yet. All I had been warned about was the sick day rules that said "double your dose" if you get ill. This didn't cover the precautions you should take and the dangers you face with adrenal insufficiency, including ultimately, death. So perhaps a bit more early education for patients like me about the dangers of not being able to take the hydrocortisone replacement.

I've recently been reading this website http://www.adrenalinsufficiency.co.uk/ which is trying to promote the dangers of this condition and the measures campaigners are trying to get in place to help those that suffer with the issue. It is still not very well understood. I've nicked this image off their site....which I found quite interesting. The dosage of Hydrocortisone I take tries to mimic this pattern by taking a higher dose first thing in the morning and less as the day progresses....

So June 22nd 2013 turned out not to be a very good day for me, as I have said before, I cannot remember much about it, but my wife can and it makes her shudder.

June the 22nd this year - a world apart thank goodness.

May 2014 - The anniversary of my Pituitary operation

I've been blogging about this topic for nearly a year now.....The 28th May 2013, a date I will never forget. The day an expert neurosurgeon put some Endoscopic surgery tools up my nose and into my brain to remove my Pituitary tumour. 

The Pituitary gland

My actual tumour

I suppose I could have gone one of two ways with all this, had the surgery and just got on with my life, or had the surgery and spent some time reflecting and blogging about the whole process and what I can actually get out of such a big event in my life. Obviously I did the latter, and I'm glad I did.

The surprising thing is that one year on, a lot of memories are still so strong - elements of my time in the run up to the operation and the stays in hospital that I remember so clearly. There are other elements that I've forgotten (or purposely blocked out) that suddenly pop back into my head for no apparent reason when I'm least expecting it.

I thought I'd take some time to capture a few thoughts about my tumour and list out the things that have come and gone (and a few that have stayed) along the way. In case any other Pituitary patients happen across this blog and have similar symptoms.

In terms of symptoms, I've been thinking of all the things I used to have that I haven't got now and indeed some of the things I have now, that I didn't used to have. Some more explainable than others, but I thought I'd list them out below in no particular order. If the changes I've noticed are really all down to having a pituitary tumour removed, it's amazing to think just how much of your body is controlled by this unassuming little gland the size of a pea.....

Things that stopped after the operation
Black eyes
Deb sometimes used to say it looked like someone had punched me in the face....she probably felt like doing so on many occasions! But I had these black lines from the corner of my eyes down underneath at a diagonal. I just assumed it was an ageing thing (like so many of my other symptoms) but they have largely disappeared. Don't know why

Muscle spasms in the morning
When I woke up, sometimes the muscles in my back and legs would spasm and lock solid, I'd go rigid as a board. It would take a few attempts before I could move. Again not sure what that was all about, but I don't get it now.

Hip ache
Another one I'm not sure of, I used to get bad hip ache whilst laying in bed....I don't now. We did get a new bed last year, so perhaps it is down to that.

Nearly fainting and sweating when exercising
This is more explainable. Because of my lack of Cortisol, I really struggled with my stamina and fitness and would just run out of juice when exerting myself. We would go out for walks, and I would have these unexplainable crashes where I would sweat a lot and feel dizzy and nearly faint. Needless to say, I don't have these now, although I do still have the odd energy crash - but I am much better at spotting when these are coming up (just before my due tablet dose normally) so a quick tablet, drink and food and I'm sorted. When my low Cortisol was first diagnosed, my GP said he couldn't understand how I was still going at all with such a low level in my body....I found that statement strange at the time, but I understand it a bit more now.

Funny vision
Again very explainable, the tumour was pressing on my optic nerve so the funny black spots in my vision that I could never quite pin down, if only I'd known that these were an early symptom. Shame the eye specialist I visited didn't spot the issue when I saw him. Eyesight is all normal now.

Pale complexion
As soon as my consultant saw me, he said I looked like the typical Pituitary patient, a pale complexion and thin face. The times people said to me "are you ok, you don't look very well" - of course I thought I was fine. Well now I have a much more colour in my cheeks and have put some weight on, so look (and feel) a lot more healthy.

Dry skin
Another feature of lack of hormones can be dry skin, which I certainly had. It is a lot better now, but still have some areas that need attention. Also for many years I had a patch of dermatitis/eczema on the top of my head which I couldn't get rid of, that disappeared within a couple of months of my operation....I can't think that it can have been for any other reason.

Hayfever
About 10-15 years ago I started getting hayfever, I never used to have it when I was young. All the normal symptoms, sneezing, itchy eyes, streaming nose & occasional coughing fits. Not bad hayfever by a lot of people's standards, but annoying enough. However, since the operation, it's gone. I really don't know why, either it is because my sinus passages have been rummaged around in during the surgery or having the right hormones in me has sorted me out. My working theory is the latter, because as the tumour kicked in over several years and put my hormone balance out of kilter, so the hayfever appeared - now they're sorted, it's gone. Who knows, but I'm glad it has gone!

Being cold
[added 29/05/2014] Forgot about this one! The final 6 months or so before the operation saw be being frequently cold, really feeling the cold like I'd turned 80 years old. This has gone now, and I think is down to having the correct hormones in my system, particularly Cortisol. Blooming good job too, it is much nicer being toasty all the time :-)

Mouth ulcers
[added 10/06/2014] Just thought of another one. When I bit the inside of my mouth, more often than not it would turn into an ulcer - painful little blighters...I probably had one a month before. Well, although I still bite the inside of my mouth every so often, I haven't had a single mouth ulcer since my operation, not one. My body must be producing efficient anti-ulcer hormones now.

Things that have changed since the operation
Tastes
After I got better from my second stay in hospital I suddenly got a taste for a few different things, some of them revolved around sweet things such as fruit. To this day I enjoy fruit a lot more than I ever did...melons, oranges/satsumas, pineapples, grapes, mangos etc. along with Coke, lemonade and orange squash....All go down a treat. I also enjoy the odd alcoholic beverage more than I used to, particularly cider. Perhaps there is that fruit link again!

Fingernails
I had very 'ridged' fingernails before my operation, then afterwards there was a distinct line across all my fingernails where they suddenly started growing much more normally. They continue to do so to this day, as if I was lacking something before. They look much more healthy now and are less brittle.

Weight
As mentioned above, I've recently put some weight on....at just under 11 stone (70kg) it is the heaviest I have been in a long time. After my second stay in hospital I was under 10 stone and it took quite some time to get back to my normal weight of 10.5 to 10.75 stone. It is the weight I have been for years and probably about right for my 5' 6" frame. I'm not panicking or going on a diet just yet, but I'll keep an eye on my weight, I like to think the weight gain is all muscle ;-)

Diabetes Insipidus
I haven't mentioned this for a while, as I think finally I am finally getting over the mental scar it left me with. I had it twice during my recovery and it was a result of my surgery. I think it has gone for good now, which is fine by me. Good riddance Diabetes Insipidus.

Lost sensation/tingly foot and leg
This isn't anything to do with my tumour or operation, but it is something I have now that I didn't have before. Tests are still ongoing, but I get the feeling there is nothing to be done except hope it will heal itself in time. It doesn't stop me doing anything, it is just a niggle that I wish wasn't there....

Cramp
I never used to get cramp, but ever since my operation I have in my legs, toes, jaw and fingers/hands. Sometimes just my thumb would lock up whilst I was gripping something, or my calf muscle would lock solid in the middle of the night. I never appreciated just how painful a locked calf muscle could be, so cramped that I could stand on the leg and I couldn't push my foot back to a normal position. I've thought there were various reasons for this over the months, hormones, lack of exercise, lack of salts, dehydration etc. as the months have progressed I've discounted each one. No-one could give me a definitive answer, although Indian Tonic Water did seem to help, as it has Quinine in it (thanks to Jean the Portsmouth QA Endocrine nurse specialist for that tip). However, of late I have (on the advice of my consultant) upped the dose of my Testosterone and suddenly the bouts of cramp are all but gone. Could be a coincidence as I haven't changed anything else, I've been 3 or 4 weeks virtually cramp free and not drinking the tonic water.

Nervousness/making me jump
I used to be a bit of a bag of nerves, it was very easy to make me jump. I hadn't really thought about it lately, but it suddenly occurred to me that I'm not like it now. Presumably being pumped with the right hormones has put something straight.

Mucky nose
A result of the endoscopic nose surgery unfortunately. I do still get a mucky nose and a bad smell up the nose periodically, not badly - in fact it is better than it was - but something I'll probably put up with in the hope it will sort itself out. Probably if I got a referral to the ENT department the first thing they'd want to do is stick a camera up my nose to have a poke around....and that's what caused it in the first place...so I'm thinking I'll avoid this if possible. As long as it doesn't get any worse it'll be fine.

Hair
[added 29/05/2014] I've always had quite fine lank hair. But for whatever reason, probably the Testosterone, my hair is thickening up now and getting some body to it. Strange really, with the male hormone installed I expected all my hair to fall out! In fact it looked like it was going to for the first couple of months on Testosterone, but it seems to be regrowing with vigour. I'd rather that way around than being a baldie!
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So one year on, what gives?
So how do I feel after the last year? I think the best phrase/words I can come up with are "a hell of a lot better" and "lucky". I am lucky in that I eventually went to the doctors and got checked out, and that the tumour I had was benign and still of a size which could be removed without major permanent damage. There is also a certain amount of luck (or maybe fate) involved in the type of tumour I had, how big it had got and how I recovered from it. I have learned that there are many different types of tumour, each tumour can have different effects and even someone with the exact same type of macro adenoma that I had may not experience the same outcome as me. I have just two hormones deficient at the end of the process (Testosterone and Cortisol) whereas other people may have had no Pituitary function or full Pituitary function and anywhere in-between....depending on the success of the surgery and how their body healed. 

There is no luck element in the diagnosis and removal of the tumour, that was much more about skilled doctors practising evidence-based medicine at their very best. 

Dr Kar (Endocrinologist) in Portsmouth QA Hospital and Mr. Mathad (Neurosurgeon) in the Wessex Neuro Centre in Southampton UHS Hospital worked together as one team and, in order to protect my eyesight, only 10 days after the MRI scan that confirmed my tumour, it was removed. Amazing. (not forgetting the unseen NHS teams that support all this great work) 

(I can't emphasise this next bit strongly enough.....) Can you even imagine the skill needed to put endoscopic surgery tools up someone's nose through their sinuses & skull and into the base of their brain and extract a 3cm tumour to the point where virtually/totally none of it is left - doing all that whilst avoiding any damage to vital parts of the body such as carotid arteries, optic nerves and of course the Pituitary gland itself. It's mind-bogglingly incredible, that's what it is, my hat gets tipped in your direction Mr Mathad.

As for my health and fitness now, I take it a lot less for granted than I did. I spent a large chunk of my life being fit and healthy because of being young and being in a job that kept me fit (Postman) so I didn't really think much about that side of things. Now I realise that I need to work at staying fit, that health will only stay if you look after it more. Have I become the perfect fitness and health machine, no I haven't....but I have more determination now than ever before to make sure I keep up my activity levels to give myself the best chance of living to a healthy ripe old age. I'm walking several miles every week, going to Pilates classes and doing some light weight training. My parents both vegetated as they got older, they didn't see the point in doing much in their retirement....my Mum had dementia when she died and it looks like my Dad has it too. I don't want to go that way....as the saying goes "live every day as if it is your last".

As for future pituitary blog updates, I don't plan on doing many more updates to this blog. I think it has run its course now, one year of me rambling on about my operation and my experiences is probably enough now. I may revisit from time to time, I may even kick off a 'general' blog about stuff, we'll see. I hope you've enjoyed reading my story, if you are a pituitary patient I hope some of this helped. 

A quick word of thanks to www.pituitary.org.uk who provide a huge amount of support on their website for Pituitary patients. I've used the site a lot.

Anyway for the time being, bye bye.

Cheers, Carl.

May 2014 - The other side of the story

During the last year, I've talked a lot about my experiences, what I've had to face and my recovery. But the side of the story that isn't told in this blog is that of my wife's. She isn't really that bothered about telling it either, blogging wouldn't be her style and in fact we haven't spoken that often about how she felt during the period of a year ago. So unless Deb decides otherwise, her story will remain largely untold.

It is all too easily overlooked how our loved ones cope with a worrying situation like ours, that they have to just get on with life and still do the things that need doing. Deb is certainly someone who does "just get on" with stuff. On reflection, the person affected, having the operation, being in hospital has somewhat of an easier deal....or at least that is the way I'm looking at it now. I was the one with all the different things happening, things to take my mind off what was about to happen. I lay in a hospital bed with all sorts of unusual things happening, blood tests, xray's, ECG's, blood pressure, life in a busy hospital ward (D Neuro)....not very pleasant in the moment, but a diversion away from what was coming up (an operation). But my wife, sat at home on her own with our dog for company, still needing to cook meals, go to work and run the house but all the time knowing a loved one is not well and that can't have been easy. We have talked about her point of view of the whole thing, and in some ways it was very different to mine. She could see how worried I was, of course I was trying to hide it...a pointless task trying to hide emotions from a loved one, it never works. Then the 2nd time I was in hospital when I was arguably a lot more ill than after my operation - that time I had no clue how ill I was, because of course I was pretty ill! Deb however saw in graphic detail just how ill I was and having chatted a bit about it, it was clear how frightening it was for her. I regret not having paid more attention at the time, but it's done and dusted now and it all worked out in the end. 

Today was another anniversary, the day the Wessex Neuro Surgery department in Southampton general hospital rang me up and "invited" me to go for surgery. We had a busy day in the garden on the 25th May 2013, it was a bank holiday weekend, and the weather was lovely. We had grand plans to turn the garden around, we had been a bit behind sorting things for one reason or another. We were sat watching telly having had the traditional Saturday evening pizza dinner when the phone rang. It was a Southampton number and the first thing that popped into my head, was "it's the hospital". I don't know why I thought that, because I had no reason to, but I think I just knew. I didn't realise they were going to say "come in tomorrow", I was thinking more along the lines of "you've been referred to us by Dr Kar in Portsmouth, come in for an appointment to see the surgeon and discuss"....but of course they were highly unlikely to do that on a Saturday evening were they! So sitting there dazed and confused on a bank holiday Saturday evening, it dawned upon us both that I was going to have an operation, my very first operation. My very first brain operation on my very first tumour. 

Bloody hell!

May 2014 - the MRI scan anniversary

Yep, today the 18th May, 1 year ago today since I went to the QA Hospital in Portsmouth and had the MRI scan that detected my pituitary tumour.

I couldn't possibly have known the sequence of events that would unfold as I lay there that day, being scanned....all sorts of thoughts were running through my head. But it still hadn't really dawned on me that it could be a tumour, and that if it was that I would need an operation. I think I had blocked those thoughts out and in the absence of any hard facts, I had my head well and truly buried in the sand. Quite natural I suppose.

But that's all I've got to say for today...I've been busy preparing a bit of a mega-posting for a bit later on this month ;-)

May 2014 - quick update

Not really much going on right now - I've been preparing a blog post to mark the anniversary of my operation...thinking back on all that has happened. I am around 2 weeks away from the anniversary of my diagnosis and under 3 weeks away from the anniversary of my operation. It seems incredible how fast time has flown by.

The only update really is on my cramp. Ever since the operation I have suffered with cramp in my calf, toes, fingers and jaw. I never suffered cramp before, so clearly something in my body has been out of balance. That has changed recently though, with the increased dose of Testosterone. At least that is what I am assuming, because it is the only thing that has changed. When I had my last blood tests my Testo levels were still low so the dose was upped slightly and has been upped again slightly. On the second increase the cramp seems to have stopped. Only time will tell as to whether it stays away.

Other than that a quick rant about our 111 service (out of hours doctors telephone number). We phoned the service on behalf of my dad, nothing too urgent but on balance it was something worrying me enough to contact them. Initially everything went well, a clinician rang dad and she thought it was worthwhile getting a doctor to ring dad. Unfortunately dad wasn't as communicative with the doctor as he was with the clinician. So we had a confused doctor leave us a message on our answerphone asking to call him back via the 111 service. So we duly rang the 111 service quoting the reference number the doctor had given. We got the follow reply from the contact centre operative:

"oh sorry, when you rang this morning you spoke to a different 111 call centre and we haven't got access to the same computer system as them so we can get access to details about the call. You will have to give us all the details again".

What the heck!! So go through it all again we did, different clinician and doctor ring dad again and come to the conclusion he was probably fine. But how on earth can you run a national service like that and not be able to share call details between centres. Madness.

Rant over.... :-)

April 2014 - an anniversary of sorts

I'm not sure if it is an anniversary that I want to celebrate, but Monday April 15th 2013 is nonetheless a memorable date for me. It was just like any other April day in many ways, but I knew I had an appointment with a consultant who was going to tell me.....well to be honest I didn't have a clue what he was going to tell me. I knew at that point I had blood irregularities and was already on Hydrocortisone tablets, but beyond that, the possibilities (according to Google) were endless.

The first time meeting with a doctor/consultant, much like any other person, is always going to be a learning process. Do you hit it off with them, take an immediate dislike....then there is all that information to take in in the haze of stress and nervousness. I am reminded of an article I read some time ago about the 'primitive brain' and how to a certain extent we have no control over how we react in certain conditions. Our primitive brain is a throwback to our caveman days when it served to keep us alive, to assess dangerous situations and make sure we run away from that big tiger than is trying to eat us. Of course I'm not suggesting a big tiger was about to eat me on that day, but stress about a big event does elicit the same response, the anxiety, the heart beating faster, sweating etc. So when faced with a stressful situation, it does help me to be aware that that my body's reaction is something normal and not to be feared, and let the more rational part of my brain take over. Easier said than done, but a useful technique.

Aaaaaanway, this anniversary. On 15th April 2013 I went to see Dr. Partha Kar at Fareham Community Hospital (incidentally how lucky we are that various consultants hold clinics at this little local hospital, rather than have to trail up to the main QA Hospital in Portsmouth or the UHS in Southampton). This momentous day he would tell me lots about the Pituitary gland, what it did and how he suspected that something was wrong with it. I was to go for an MRI scan to tell for sure what the problem was. Oh and he told me I was on way to high a dose of Hydrocortisone as well, so I had to cut them down over the course of a few weeks. It was just as well because they were making me a bit hyper and I was having trouble sleeping. Looking back on it now, hyper was certainly not a word you could describe me back then!!

So this anniversary was the first of a series of anniversaries that I have coming up, none of them worth celebrating, but certainly pretty memorable.

One of the good things to come out of my meeting with Dr. Kar, was to meet someone with such a passion for what he does. Like many people my knowledge of the NHS came from what I saw in the media and that is not really a good thing. You only get to really understand anything in life from your own personal experience and of course I could have experienced good or bad....(and my experience wasn't always 100% across my time spent with the NHS), but with Dr. Kar luckily it was always 100%. So although I walked away from that meeting still with many questions and no definitive answer, I had confidence that I would get a diagnosis and it would be dealt with by someone who seemed to know what they were talking about.

Next 'anniversary' comes on Friday 24th May 2013. That is a biggie.

April 2014 - Bring it on!

Well, April is upon us and here in the UK that can only mean one thing. The days are getting longer, tree blossom is everywhere, trees/bushes are coming into leaf - essentially is a brilliant time of the year. A time of year I really love, because it is natures way of reminding you what there is to look forward to over the coming months. Bring it on I say!

So what about my Pituitary update then....well again not much to report. I have upped the dose of Testosterone as per my most recent Endocrine appointment, I can't say I am noticing any difference as a result but hopefully it will show up in my next lot of blood tests. As for my Cortisol levels, I have noticed now I am getting more active out in the garden at the weekends, I do have a tendency to use up my Cortisol and have an energy crash...this is almost always within an hour or so of me being due my next dose of Hydrocortisone. What I am finding is that I am more in tune with this need, so as soon as I feel myself start to flag I can remedy the situation with a quick drink and an early tablet dose. Of course everyone 'flags' and has energy crashes from time to time, but the lack of Cortisol feeling is quite unique and easy to spot. It is like a sudden 'off button' and I physically sink, so much so that Deb often spots it before I do. As I've said before, this is a result of me taking fixed doses of Hydrocortisone during the day and my body not being able to make any Cortisol of its own, so when it's gone it's gone! Not the end of the world, because I've always got tablets nearby and recognise the symptoms.

Health-wise, I've been on a collision course with my lack of fitness for the last few months. Regular walking has really helped my aerobic fitness and I can zip along for 2 miles without breaking sweat averaging over 4mph and doing a 14-15 minute mile. Much better than 6 months ago. I can't tell you how much good the Pilates is doing too, if nothing else it points out in no uncertain terms which muscles you haven't been using for a long time. In my case, it is my back muscles. Doing the "dart" where you lay on your tummy and raise both your chest and legs off the ground, back in January I couldn't left my chest at all, now I can. Not very far, but far enough to notice a difference. Also my joint flexibility is coming along, still a long way to go but a lot better. Last night we did some new exercises including some press ups, I am embarrassed to say that I couldn't do the press ups as intended, I had to wimp out and do them with my knees down....I could only do two press ups - HOW CAN THIS HAVE HAPPENED!! I used to do 50 press ups easily, granted that was about 20 years ago, and I probably haven't done any press ups for 10 years. The exercise was do the plank for a bit then whilst still in the plank release alternate legs and stretch them out, then do 5 press ups (fail!) then walk your hands towards your legs and stand up....then bend over put your hands down and walk back to the plank position and do 3 repetitions of that exercise. Nightmare! Definitely the hardest challenge in Pilates for me to date. 

I have a desire to get back on my pushbike too, I've been waiting for the weather to get better and I have a few routes mapped out, including one I used to do many years ago when I was fitter. We aren't talking very long distances, probably about 6 miles, but definitely a challenge I want to get stuck into.

I think that's about it for now, a positive update I think. I'm feeling good, the time of year is uplifting, so as I said earlier, bring it on!