December 2014 - end of another year

At the end of a year looking towards the beginning of another, reflecting. We all do it don't we, even if we don't write about it or say anything out loud, the "what if's" and the "what will happen next year" questions. If life has taught me anything, it has been this:

• Whatever happened in 2014, I can't change it now....I can only learn from it
• If I want anything to happen/not happen in 2015, it's down to me to make it happen

So what has gone well for me in 2014 then?

Mastering the pituitary condition
I think this year has been a massive leap forward for me. In 2013, it was all about diagnosis of a condition, having an operation and recovery....about the condition getting the better of me. In 2014 it was about me saying "to hell with this" and turning it around. I am very proud of the fact that I set out to get a lot fitter and get myself in much better mental shape than I was, and I think I have been largely successful. Without doubt physically I am much better, I still walk several miles a week, I've developed muscles that I haven't had for years and I can break into a run without it feeling like too much effort. I can walk up (almost two steps at a time on a good day) to the fourth floor via the stairs at my office building without gasping for breath.

Pilates
In addition to the above, Pilates has been a surprise hit. I started in January 2014 and went to the class almost every week in 2014. I am NOT good at sticking to stuff like this and to be honest I wasn't sure I would last very long. But my goodness me, what a difference it has made - simple things like sitting cross legged, couldn't do it....balance on one leg, couldn't do it....do controlled sit-ups, couldn't do it, and the list goes on. My balance is vastly improved, muscle tone has come on in leaps and bounds. We do a move whereby we do the 'plank' and then several reps of press-ups and walking back upright on our hands. Back in about March when we first did the exercise, I could do zero press-ups. At the end of the year our Pilates teacher tried to get us to do two reps of 20 press-ups, we all thought she was mad....I did 18 followed by 9, which was darned impressive I think. We restart our class next Tuesday, I'm really looking forward to it and I will be pushing myself harder in 2015 to achieve more.

Work
I've had a really busy year at work and achieved much. I'm not going to labour this point here, but I KNOW without doubt that prior to 2013 I could not have achieved what I achieved this year, I just didn't have it in me. I think it is this area the Pituitary thing has been most evident, you may expect that putting Cortisol and Testosterone back in my body would help me physically. However, I totally underestimated how much it would affect me mentally and how having the right hormones has enabled me to become more confident and assertive at work. It is a big win.

So what then for 2015? I think it is a simple enough story.....

• Don't take anything for granted in life
• Continue to work hard at both keeping the physical/mental gains from 2014, and improving still further in 2015
• Be the best husband I can be (I've a feeling 2015 will be another tough year for us)

I still consider myself to one of the lucky Pituitary patients who has been able to move on with life and not have undue complications. I just take the medicine and that's that.

So I wish you all a happy 2015 - rock on \m/

November 2014 - quick meds update

Me again!

Hydrocortisone
As I've said in previous blogs, I do have the occasional energy crash due to a lack of Cortisol - usually at the weekend. The last few weekends, following a consultation with my Endocrinologist, if I know in advance I will be doing something strenuous then I take an extra 2.5mg (quarter of a tablet) of Hydrocortisone. So far it seems to be working. I didn't expect to be doing much this last weekend, so didn't take any extra, however did end up doing some gardening and had an energy crash. But in contrast the previous weekend, I was digging out a large stump from a bush in the garden, so had taken the extra 2.5mg and voila, no energy crash. So at least I have a way to avoid the energy crashes now....that is the theory at least, I will try it out over the following few months to see it it pans out.

Testosterone
I have always taken a gel to replace my Testo, which has been working ok but it does get a bit of a faff and also does severely dry my skin sometimes. So I talked to my Endocrinologist about trying a Testosterone injection instead. You only have to have the injection every 12 weeks or so, and although it is supposed to be a bit uncomfortable initially it saves worrying about daily gel rubbing. 

So I had the injection yesterday (in the bum cheek), and although it is a bit tender initially the 'pain' (it's barely pain) subsides and hopefully that's that for a few weeks. The doctor will test my Testo levels at 12 weeks to see if I still have adequate Testo levels, and if I am a bit low then I might need to have the injection (say) every 10 or 11 weeks instead. But we won't know until then how quickly my body absorbs the injection. The Testo injection is suspended in an olive oil like substance so that the body can't absorb it too quickly. I'll report back in due course to see how it goes. The only slight reservation I had yesterday was that it made my right leg go a bit numb, and my left leg go a bit more numb than it already is....as you know I have the lingering numb/tingly leg thing since I damaged a nerve somewhere. It seems a bit better today, so hopefully a temporary thing.

Other than that, all is good on the Pituitary front. Long may it continue! :-)

October 2014 - the state of the NHS

There are probably hundreds of not thousands of blogs like this across the Internet. So let me add my two-penneth!

Here's some facts for you, taken from this website 
http://www.nhs.uk/NHSEngland/thenhs/about/Pages/overview.aspx 

• The NHS employs 1.7 million people. Including:
• 39,780 general practitioners (GPs)
• 370,327 nurses
• 18,687 ambulance staff
• 105,711 hospital and community health service (HCHS) medical and dental staff
• Only the Chinese People’s Liberation Army, the Wal-Mart supermarket chain and Indian Railways directly employ more people
• Funding for 2012/13 was around £108.9 billion

Reading the media over the last year or so, you cannot fail to have noticed all the chatter about the state of the NHS, how it is going to fail soon with the stress of workload and lack of funding. Then coupled with that all the articles about 'eat this' 'don't eat that' 'miracle cure for this' and various scaremongering stories. Also people seemingly routinely choosing to go to A&E to get seen quickly rather than using their own GP surgery or the 111 NHS phone service. I really don't know what to believe from stories in the media, and I can see how the general public must be completely confused over what to do or not to do, and whether or not the NHS really is in the level of crisis suggested. But as the old saying goes "there's no smoke without fire", I'm sure at various levels things need fixing, but on a day to day basis can things really be THAT bad?

I think speaking as a patient, I can only comment on my experiences which have been generally good, or very good with just the odd gripe here and there. But at an individual level, every NHS worker I came into contact with has just had the 'will' to care and look after patients at their very core. Whether I'm talking about my local GP/surgery, the people that diligently cleaned the hospital wards I was on, served the meals, the nurses, the doctors and the consultants....all showed the will to provide that care. 

I went to our local hospital open day recently and had a tour of both the radiotherapy dept. showing off their amazing machines used to treat cancer and also the mortuary. Speaking to NHS staff in the radiotherapy dept. they spoke with expertise and passion about the job they did and how they put plans in place to treat patients and how precise the treatment was. The accuracy and effectiveness of the treatment available was incredible to understand. But what really stuck in my mind was the mortuary tour and not for the reasons you might imagine. 

One of the staff who did the tour still referred to the bodies they receive as "patients" and how what they do is still part of the treatment, the last thing they can do for that patient in their journey, compassion was evident in abundance. The person who really impressed was Brett (Lockyer, I think) the Pathologist, he explained in detail what his job was and how long he had been in training to do that job - 16 years training in fact! He had been through doctor training and then a doctor in various departments including A&E leading up to the job he is doing now (classing all this as 'training') and his ambition to become a forensic Pathologist. How lucky are we that there are people like Brett who are prepared to do the job they do, and spend so much of their lives dedicated to doing it, to wanting to do that job. I can never imagine doing the job Brett does, but spending some time listening to his passion could even persuade someone like me to want to go into the medical profession (not now, I'm too long in the tooth). It strikes me that if the NHS really is struggling to recruit GP's, then the NHS needs to talk to young people at the right age, spread that passion that I witnessed to impressionable young minds. If that passion was infectious to me, it surely would have been to a 14 year old me. As with any organisation, its strength lies in its people and they will be the saviours of the NHS.

Yes, that is a simplistic view, politics and money have to come into play. But I don't think it will matter which political party sticks its oar in, I don't think any of them have a true grasp of how to fix a problem like the NHS. In reality it is a complex myriad of things. With the population generally living longer maybe we should all be prepared to pay just that little bit more out of our salaries each month, I'd willingly do this if there was a robust plan in place to spend it wisely. 

So here's my plan for the NHS:

Make good models standard
Identify models/practices from across the NHS (across the world!) that work well, hell that work perfectly, save money and use those models as a basis for care in every hospital, GP surgery etc. If you have a process that is helping patients, saving money, creating efficiency etc. then it should be adopted as a standard, no arguments. I know not every patient has a standard 'need', but if a model for (say) excellent Diabetes care exists, why wouldn't every hospital/CCG area implement it? Should they even be told they HAVE to implement best practice?

Pay more
We should be prepared to stump up a bit more from our salaries to help fund the NHS. There are about 30 million people working, if they all paid an extra £1 per month or £12 per year, that is an extra £360m into the coffers....£3 a month would make £1bn. My simple sums probably don't stack up, but it is surely a rough guide? Could the NHS use an extra 1% budget, I'd have thought so.

Spread the love
Get those passionate experts out into the community, let them tell the world about the job they do and get recruiting, persuading and educating the potential next generation of NHS heroes what a great and exciting place to work the NHS could be for them.

Finally, us, the patients
Where possible, we do have to look after ourselves. Health is a fickle beast and it isn't always within our grasp to be healthy all the time, but eating correctly, not smoking and generally not doing things can land us in hospital is our responsibility. Lifestyles have changed even from when I was young, not that long ago! My cycle & walk for miles as fun is today's Xbox/PS4 fun. Probably a subject for a different blog right there......

So.....I feel like perhaps I have rambled on a bit, but the summary of all that is....I've got no faith in any political party to fix the problem, I think we all need to be prepared to pay a bit extra to support the NHS and that the best chance of the NHS being 'fixed' is for the NHS to promote its most excellent models and make them standard. And finally let some of that NHS passion out into the wider world, help persuade new talent into the NHS and make sure that the NHS continues to be the envy of the world for years to come.

October 2014 - emailing health professionals

I wanted to divert away from the normal flow of my blog for a minute, so rather than be about me I have a couple of blogs that have been nagging away at me for a while regarding the beloved NHS. I say “beloved” because it is to me and to many people I know, we have come to expect it to be there for us when we need it and for all the issues that are being flagged up in the media right now, I still think this model is a shining light amongst healthcare systems around the world.

Clearly my views here are as a patient of the NHS, so I am not that familiar with the complexities and politics of the NHS, which is probably a good thing, because it helps see the issues more clearly. If you are a healthcare professional reading this, you may or may not agree with what I’m saying, and that is fine and often the way with a bit of healthy debate. I’m absolutely not an expert in healthcare, and I’m not suggesting that things aren’t being done all the time to improve patient experience and outcomes, because I know they are, I read about the good things all the time. But this is straying into the other nagging blog subject I’ve got in my head!

So my first subject is health professionals emailing patients, and vice versa. I’ve been involved in a few Twitter chats where this has come up, always views for and against the subject of emailing patients.

The consultant I have had the pleasure to deal with is Dr Partha Kar, Endocrinologist at Portsmouth’s Queen Alexandra Hospital. He is a big advocate of email as a useful patient support tool, in fact before my dealings with Dr Kar, I didn’t even realise it was an option. Let me tell you why I find it so beneficial.

A recent exchange was something like this – I had a regular Endocrine check-up coming up, so I had some blood tests to get done before my appointment with Dr Kar. I couldn't remember, and wanted to check, whether these blood tests were ‘fasting’ or not. So the two basic options were going to be:

Without email – I telephone the Endocrinology department, speak to the receptionist about my question, they take my details, details about the blood tests etc. and make a note to contact Dr Kar (exactly how this would happen I’m not sure, presumably either a computer system note, or pop in and see him in-between clinics, or after clinic)…..then once the relevant information has been obtained, telephone me back (if I'm not in, it may not be 'allowed' for them to leave a message on my answerphone). I envisage that depending on how busy all parties are, this may take a day or so, depending when I originally called, maybe the same day if I called early in the day.

With email – I email my question directly to Dr Kar. He answers within the hour, a simple “no” was all that was needed. A minute of his (valuable) time to read my email and reply.

I know which of the above is easier and quicker for me as a patient. I’ve had various exchanges of a similar nature, those queries which are really simple and quick to answer.

Now of course, not all patients are created equal and not all consultants are created equal. A patient may not have ready access to email, may not even want to use email. And of course the consultant may not want to give out their email address. 

I know there are several worries that health professionals have – “I don’t want to give out my email address because patients will contact me all the time”, “email isn’t secure, important patient details could get ‘hacked’ or lost”, “I haven’t got the time to start answering lots of emails”. So let me try and answer some of those…..

I don’t contact Dr Kar all the time; if I did I strongly suspect he would have put me straight by now. I know that his time is precious, so I’m not about to befriend him and drop him an email to say what a wonderful weekend I’ve had, or pass the time of day. I’m only going to use the email medium when I feel I have to, and when I am asking a question that is easily dealt with by email, mainly yes or no questions or quick updates on something we have spoken about at a face to face appointment. On the very rare occasion when I’ve misjudged that, Dr Kar replied to say make an appointment to come and see him.

OK, email isn’t totally secure or foolproof. Is there a single secure system available to health professionals that allows them to send and receive emails securely….from the Twitter chat I’ve seen there doesn’t appear to be ‘a single system’, although there does appear to be methods out there. The NHS is obviously strapped for cash, and developing such a system is going to take time and money, and certainly the latter may well be better spent elsewhere. But right now there are emails, easy to use and essentially free. I believe that more use could be made of email as a tool to make communications with doctors and patients easier, clearly it isn’t suitable for every medical occasion.

With regards to the “not enough hours in the day” argument. Doctors and patients have to converse somehow, and if you can spend a minute or two answering that simple yes or no email, isn’t that better than tying up other valuable resources in the process of answering those things. And whilst I’m saying the doctors answer the emails, it needn’t necessarily be (I know receptionists are horrendously busy too, but answering a few emails to cut down the number of phone calls.....might be a better balance?). I think there are healthcare professionals out there using email to their benefit and this best practice should be shared with others….if it can work for one it can work for others. Don’t just go down the “it won't work here” route because of course it won't if you don’t want it to. It must be possible to introduce this way of working in the short term whilst working on that longer term solution, if such a thing exists.

Also there will be a difference between the way email would work for hospital consultants and GP’s, but I have seen examples where some GP’s do offer communications by email, so again as above it can work in one practice it must be able to work in another. Sure you may not want to introduce blanket email for all patients about all subjects, but introduced sensibly and in a controlled way, what's the problem? I know that the doctors surgery I attend, and another surgery nearby work differently in quite a few ways, neither uses email to my knowledge. But why should there be such differences when they only about a mile apart?

The other example I saw today was the advertising of flu clinics using not only email, but also on the surgery website, Facebook and Twitter. So whilst I am advocating email here, other frequently used channels exist. How people communicate with the world is changing, if the surgery has a presence on Facebook, and the patient has ‘liked’ the page, then hey-presto a message appears in their feed that their doctors surgery is booking flu clinics. I don’t check my doctors surgery website every day, but I do read Facebook/Twitter every day. (well most days….) Yes, I know social media opens up another channel of communications you have to manage, but the same message from me, some obviously use it, why not others? Tell patients up-front what it can and can't be used for.

So I think that is all I wanted to get off my chest for the time being. The wider issue about all the things that the NHS has on its plate probably makes the debate of email seem all rather insignificant. But if you separate the seemingly massive insurmountable task that is ‘fixing’ the NHS it surely boils down to what little things can you do to improve the patient experience, what little things can be tried to help things just that little bit for patients. Things that may not even cost that much money to implement.

Why not try it, I can't guarantee it will 100% work for you first time, but I think your patients may thank you for it.

September 2014 - Latest check-up results

Hi there, after a long break, I'm back!

Today I went to see Dr Kar my Endocrinologist to have a check-up on my progress. It has been one year and 4 months since I waved goodbye to my Pituitary tumour, 18 months since I started on the Hydrocortisone tablets and a year since I started on the Testosterone. Having reviewed my blood tests, Dr Kar confirmed that everything is normal. Lets just celebrate that word again

Don't you just love that word - even though 'normal' means different things to different people, to me it means feeling full of energy (well, not all the time), being fitter, having more mental 'get up and go' and just so many other little things. Yes, even being hairier!!

There is still the odd glitch here and there, I still have energy crashes at the weekend where I am physically a lot more active than I am during the week, which on advice I may be able to counteract with a slightly higher dose of Hydrocortisone.....but not go mad with the higher dose as I have to be careful not to make a habit of it. But all in all, so much better.

I have another check-up in February of next year and another MRI scan after that to make sure my tumour isn't making a re-appearance.

General health-wise, I've had my glucose levels checked because I had developed a concern (a silly concern really) that I may be at risk of developing diabetes, but my blood glucose is 4.8 which is apparently fine. I need to have another Cholesterol test, because I was showing a bit high around 18 months ago, but that was before my hormone levels were sorted out. So I'll have a blood test soon to make sure that hasn't got any worse (I think it was about 7 before, where the ideal is 5mmol/L) and maybe even got better. Who knows, I'm not overly worried about it, but still I ought to have it checked.

As for the numb/tingly leg/foot, it is still there and I think I'm probably stuck with it. It has settled to a fairly low-level annoyance....it hasn't got any worse or better for a while and I think I impinged a nerve in my lower back somewhere....but all the tests for really bad things have come back negative, so that is a good thing.

So I'm still here, and still improving. All in all, today was a pretty good day!

August 2014 - Man vs. hedge revisited

Around this time last year, I did a couple of blogs

Man vs Hedge
Man vs Hedge part 2

Well I thought I would revisit this part of the blog, as this bank holiday weekend it was conifer hedge trimming time again. The plan was try and do as much as possible on the Saturday and Sunday, as Monday the weather was supposed to be rubbish. However than plan didn't start out very well.

The one thing you need more than anything else before you trim a conifer hedge, is very sharp shears or a very sharp electric/petrol hedge trimmer. Well, we certainly haven't got the latter and anyway I much prefer the finish on the hedge with shears. So my expert blade sharpener was employed (my wife) and sure enough the blades of our 2 pairs of shears were super sharp. However, sharp as they were, they simply would not go through the hedge. It was taking about 6 cuts to do what one cut should do, so I was getting nowhere fast. Despite lots of adjustments, we came to one conclusion, we needed a new pair of shears. So off Deb went to buy some, and an hour later she returned and voila, the new shears went through the hedge like a knife through butter. The only problem was, the best part of the day was wasted now, and we were behind schedule. That meant only one thing, I had to be on top form in order to rush through the job.

However, my body decided to let me down a bit, after lunch I was in a right strop because of the shears problem and was having a bit of a rant, and I had "that feeling" that I get when I am lacking Cortisol....Deb knew it straight away, apparently I have a "look" that tells her straight away. So when she went off to get the new shears, I sat down and had some food and drink and a rest. She returned, and by then my body had caught up with itself and I was off. For about 3 hours I went at the hedge with the kind of vigour I could only dream about prior to this time last year. I sheared almost without rest and my arms just felt like they could go on and on. Then today (Sunday) although my arms were a bit achey from yesterdays (a bit over the top) shearing prowess, I blitzed through the rest of the hedge whilst Deb had started cutting the hedge to height (I'd done the sides). By the time the day was done, We had so nearly finished the hedge, bar about 10 feet of the top, which we'll try and finish tomorrow depending on the weather....had we not had the shears issue, we would have finished. And as I said in one of the previous man vs. hedge blogs, I did really push it for those 3 hours, because there is a part of me that wants to see just how hard I can push myself.....just to see how far I've come. Silly bugger really, but that internal drive to push myself has really come back into play....I think that may be the Testosterone at work.

So I have proved that I have SO much more stamina and strength than I had, better still than this time last year, when I had surprised myself. But still there is that niggle that for some reason, almost always at the weekend, I can still suffer with a lack of Cortisol. I don't think there is anything to be done about it, I think it is because during the week I do a desk job which is not that physically active, then at the weekend, my life is very different and much more active....and sometimes (not always) my body struggles to cope. As I've said before, if the Cortisol 'drop' is just before lunch as it often is, an early tablet dose sorts me out. This was pretty rare in that it was after lunch and when I'd already taken my tablet....so a rest seemed to allow it to kick in. Odd.

So a positive experience, but not without its problems. Never mind though....I'm still feeling very lucky to be in the position I am in. 

August 2014 - I've been ID'd

Hi there, long time no speak!

Still much the same here, taking the tablets, spreading the gel and symptoms unchanged. Still getting gradually fitter, still doing Pilates, walking and some weight training. 

Reason for the update is that I have finally got around to buying myself some medi-alert ID stuff from this company www.onelifeid.com. They do all sorts of ID styles, so I decided to go for both a bracelet and an ID card for my wallet (and car). I've talked about them in the blog before but it has taken a while to properly sit down and get it done. In part because it takes some thinking through what exactly to have on the ID, phone numbers, description of what is up with me etc.

But it has become obvious that when I go out for a walk in the morning and have nothing on me except my house/car keys and my phone, how exactly would anyone ID me at all if I got run over, let alone know that I had a requirement for Hydrocortisone. So now I will wear my shiny new bracelet with pride and all someone has to do is ring the emergency contact number on the bracelet, or scan the barcode to bring up a more detailed set of instructions (I've obscured the phone number, not sure Deb wants her mobile number posted on the web!!)

So there we are, finally I've accepted that I really ought to carry some sort of information about my condition around with me. The card for my wallet is really good too, it has more space for a bit more information. It also made me a bit more aware generally to look out for these kinds of things on other people, it is one of those things you hope never has to be used, but if they do have to be used, they could just be a lifesaver!

July 2014 - reflecting on that Addisonian crisis

As I have reported in recent blogs I have just passed the anniversary of my Pituitary gland tumour removal and various hospital visits. What I've been reflecting on in particular is the adrenal insufficiency (Addisonian Crisis) event that happened last June. On occasions I still struggle to come to terms with what that really meant and what having Hypopituitarism means now. 

On a day to day basis, I take two hormone replacements (Testosterone and Hydrocortisone) and everything seems totally normal, it IS totally normal. I live my life just like anyone else. But it is when that Hydrocortisone pill taking doesn't work is when it brings all this into sharp focus - more so when I read this article http://www.bmj.com/content/345/bmj.e6333

A couple of quotes from said article:

"Patients with adrenal insufficiency are at risk of developing life threatening adrenal crisis if steroids are reduced or stopped"

"Fatal but avoidable addisonian crisis is the second most common cause of death in patients with known Addison’s disease, accounting for 15% of deaths in patients with this disease" (I haven't got Addison's disease, but lack of cortisol in Addison's patients and me amounts to the same thing)

Adrenal insufficiency 'features' mentioned in article
Hypotension - I had this (low blood pressure)
Hyponatremia - I had this (electrolyte imbalance in the blood)
Hyperkalemia - I definitely had this (lack of Potassium in my blood)

The BMJ article makes several interesting and stark points about my condition, about adrenal insufficiency (see above quotes). I do carry a blue steroid card in my wallet, an emergency Hydrocortisone injection and a stock of HC pills wherever I go...so I never get caught out. But if I end up not being able to take and keep down my pills because of vomiting like last June and I don't take quicker action, as I didn't last June (because of ignorance) then my blood pressure could fall, I could lose consciousness (which I was very close to doing) and in due course, die from my condition.

As I've said before, my Cortisol levels will have been gradually lowering over several years prior to May 2013 when I was diagnosed with the tumour. Gradually my body got used to ever lower doses of Cortisol, so low that my GP didn't really know how I was getting by. But having sorted that out and started me on the HC pills, suddenly my Cortisol levels were artificially back to where they should have been and once my body got used to that, it could no longer tolerate dropping suddenly back to a level that was much too low....even if that is where it had been for years.

When I was ill last June, when my wife was desperately trying to get an out of hours doctor out to see me, the person Deb spoke to on the phone had cottoned on to the seriousness of my condition and was arranging for me to be admitted to the Medical Assessment Unit in the QA Hospital, but they wouldn't take me until I had actually been seen by a doctor. The phone doctor arranged this, and once seen by the doctor who came out, Deb took me in and I started treatment. But what if the phone doctor hadn't seen that risk....who knows.

So the upshot is I was reading the above article to Deb and saying "I really ought to get one of medical alert bracelets just in case" and she said "oh, so you are finally taking this seriously then". That took me back a bit, I wouldn't say I wasn't taking it seriously, all I see is the day to day task of taking tablets....not what happens if I don't or can't. So I really must sort that alert bracelet/pendant out. The other thing that occurs is maybe it wasn't clear enough to me the consequence of not taking the tablets back then, I knew I had to take them and double the dose if I became ill...and I knew I mustn't stop taking them. But exactly how ill I could become wasn't really made clear, I suppose no-one really expects that to happen so soon.

The other worrying thing is hoping the medical professionals that I come into contact with, are aware of what condition I have, and making sure they fill me up with steroids at the appropriate times.

So now I've got that off my chest, a quick update. Still going fine, feeling great, put on a bit of weight but have levelled out at just under 11 stone for the time being. Still trying to keep fit with the Pilates and some weight training. Still having the odd energy crash, nothing too serious and still have a tingly leg and foot, I think very slowly it is improving but a year down the line, still there.

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!
------------

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!

March 2014 - Neglected my emergency kit

A bit of a gap since my last update, pretty much because there hasn't been much to say. Which is a good thing!

One thing that did come up recently was the subject of my emergency Hydrocortisone injection kit, partly because of my recent few days off and holiday to the Isle of Wight and partly because of a chat to a Twitter contact of mine who is an Addisons patient. Last year I went to an education day at the QA Hospital Portsmouth to teach me how to inject an emergency dose of Hydrocortisone (HC) if I ever needed to. The circumstances of ever needing to are quite specific, such as if I have a bad dose of vomiting which means I cannot keep down my HC tablets or if I have a major trauma such as a broken bone. I do not make enough Cortisol of my own, the body would normally produce its own or give me more as and when needed, but I make a low amount and not enough for daily life and certainly not enough for a stressful situation such as a broken bone. So the emergency kit should be around me at all times in case I need it, as that injection could essentially save my life by giving my body the Cortisol it needs to fight infection or stress. But that kit it isn't always nearby. I've been a bit remiss in paying attention to it, and chatting to my wife made me realise she is quite worried about it, and chatting to the Addisons patient - who quite the opposite of me has several kits available to her (one with her at all times) - made me realise I'm not taking this quite seriously enough (whilst not erring on the panic side of things).

OK, so I haven't got Addisons Disease, but I could end up with similar symptoms if I have an 'Addisonian crisis' or 'adrenal crisis', in fact I did last June**. But the end result, i.e. a severe lack of Cortisol, amounts to the same thing. So what I'm going to do is ask the doctor for another emergency kit....I need to re-order the Cortisol injection anyway as it is nearly out of date. The reason for the 2nd kit, is that the current kit lives in the medicine cabinet at home, but what about when I'm at work in Portsmouth, or away on a business trip to London?....not a lot of use is it? So my 2nd kit will live in my work bag, which will be with me wherever I happen to be working. The other kit will remain at home. Of course, when I go away on holiday the kit comes too as it did this last week. But again, not enough thought given by me....the kit remained in the holiday cottage, not a lot of use if we are out and about and I need it. So it needs to live in the car whilst we are away, somewhere it can actually be of use. So nearly 10 months in since my operation, I'm still learning. Yes on the 28th of this month, it will be 10 months since my Pituitary Tumour was removed, amazing.

** My wife and I have very different memories of my adrenal crisis from last June. My memory is, well, in fact I have very little memory of it, which is the whole point really. I was very ill and was admitted to hospital in a right state, so I haven't got any bad memories of the actual event only the aftermath of recovery. Whereas my wife has very acute memories of my descending into illness, being incoherent and almost losing consciousness on several occasions and Deb was really stressing out about trying to get me admitted in the first place. Back then neither of us really understood what an adrenal/Addisonian crisis really was. Luckily we both are a lot more educated now!


I need to pick up my prescription for my amended Testosterone dose, which the doctors surgery finally got around to sorting out....it was a bit harder than it needed to be but we got there in the end. I can also pick up my blood test form to check out my vitamin B12 levels to see if we can rule out another potential reason for my numb/tingly leg. Lets see how that pans out.

So that's my latest update, over and out!

March 2014 - health & fitness musings

I suppose since I had my first real health scare last year, I have become a lot more aware of how unfit I have become, and that I want to do something about it. I guess there is always a catalyst to make you do something, a Pituitary Tumour was mine.

However, I can't entirely blame my lack of hormones for my reduced fitness levels over recent years, although undoubtedly they were a factor. You've got to really want to do something before it fights its way up your priority list.

Thinking back to my youth, I was a Postman for many years and made me hyper-fit into my late 20's and early 30's. Through my 30's I did 7 years of circuit training 2 or sometimes 3 times a week. Played Badminton a lot, cycled a lot.....but gradually this tailed off. Probably only in the last 5 to 7 years and probably due in part to getting older, lack of effort, and lack of hormones. Thinking about it recently, I can tie down a point that I really realised that my fitness had gone downhill, although I had ignored it until now. Deb and I joined a Badminton club in an effort to get into a routine with our playing, we thought going to a club weekly would both increase our fitness, and make our game better....neither worked very well for me (quite well for Deb though). In my first week there, I badly sprained my calf muscle....up until that point in my life (about 5 years ago) I had never sprained a muscle. Although they didn't think they were, these club members were really rather good Badminton players, much better than us. So to try and make up for my lack of playing skill, I tried to make up with physical ability...and what was the first thing that happened, I injured myself. We played quite regularly for the year we joined, and my game probably got better, but I barely won a game all year and was pretty fed up by the end. I was struggling, but didn't understand why.

Then in the last few years, I would start to get tired when out of walks, have energy crashes and feel generally 'lacking', all of which I know now was due to the Pituitary Tumour.....but I was thinking was just down to me being a lazy devil, which in part of course was true.

So although I have started doing a lot more walking and a bit of cycling (and this is working well), I decided that I needed something else a bit different. So I have been doing Pilates, in a men-only class, for the last 9 weeks. I knew that my 'core' needed a lot of work and this was more than proved in the first week, painfully proved. I didn't know a lot about Pilates other than what Deb had talked about as she has been doing it for about 18 months. What I didn't realise is all the other muscles Pilates affects, and just how much of that muscle I haven't exercised for a long time. My back is very weak, arms, legs you name it. The other thing it has highlighted is just how much suppleness/mobility I haven't got in my hips, back and shoulders. I just can't get into some of the positions required by Pilates....I am improving though. This is probably less to do with Pituitary matters, and lots more to do with sitting at a desk for years hunched over a computer. I am determined to sort this out during the year. My least favourite Pilates exercise so far is "the 100"....it's bloomin' hard work (it might not look it.....)

At least now I have the correct amount of Testosterone floating around my bloodstream, I have a good chance of building muscle now, so all my hard work won't go completely to waste.

Lastly, another thing occurred to me, panic attacks. In the year or so before my operation, I had several episodes that we put down to me having a panic attack....for no obvious reason most of the time. I read a story from a fellow Pituitary patient who has been suffering with panic attacks, and I suddenly realised, I haven't had any since my operation. Not sure what the link is, but I am sure there is one.

First blog post in March, over 9 months since my operation already.....