July 2016 - A sharp scratch

My latest post is pituitary related because it regards a journey made whilst I was having loads of pituitary related blood tests, but this post is not directly about pituitary issues but about overcoming the fear of needles, of both injections and blood taking. The fear of many things isn't necessarily rational but scary nonetheless. Also I have been reading a book called The Chimp Paradox by Prof. Steve Peters and I realise that I absolutely used his techniques but before I had even read his book. The purpose of writing this piece is in the hope it might help someone, showing how I overcame my fear and hope it helps someone else do the same. 

The mainstay of The Chimp Paradox book is of course the Chimp part of the mind, it is an emotional and irrational beast. The book also talks about the human and the computer parts of the brain. The human is us and the computer is where we can store things that both the Chimp and the human can reference to help them make sense of the world. Essentially you program things into your 'computer' so they become the 'norm' and then when an event happens the pre-programming takes over. I don't usually read self-help type books but the Chimp Paradox is a very good one and although I haven't read it all yet, I have gone over the parts I have read several times.

For me, when I used to have blood tests I used to nearly pass out. I don't really know why I used to fear the blood test so much, it wasn't like I had good reason to, I'd never had a bad experience. Prior to 2013 when my pituitary journey kicked off, I had very few blood tests as I had no long term medical conditions. My main fears were:

• The blood test site wouldn't stop bleeding and I would bleed to death
• My arm would somehow not cope and drop off
• It would be REALLY painful
• After the blood taking I felt I could barely use my arm as I was convinced I would start it bleeding 
• Some kind of long term damage would have occurred

Just typing the above out makes the whole thing seem ridiculous, but that is what I felt. So in 2013 when the blood taking was very frequent it was pretty inconvenient to keep feeling this way. By the time I had come out of hospital for the 2nd time in June 2013, I had already started to be de-sensitised by blood taking, but I was still scared. I suddenly realised that I had a chance to put this right, I had some real hard evidence about what this blood taking was doing to me. That is, not a lot really!

So I sat myself down and wrote out some of the above statements about blood tests and what they meant to me (the list was a bit longer than the above) and I looked them all through and spoke out loud to myself. "Did my arm actually drop off at any point", "did I bleed uncontrollably"...... As you may guess, the answer was "no" to every question. It is true that I did bruise a bit on quite a few occasions, but even so, no permanent damage was done. I felt I had to get this evidence clear in my head.

It took quite a while for me to go through all my silly statements and rationalise them. What I was doing was essentially programming my computer with facts. Previously all the irrational stuff was coming from the Chimp.....all those statements about my arm falling off were emotional things, the Chimp ruling my mind and telling me lots of falsehoods. Getting some facts programmed into my 'computer' helped me settle the Chimp down and me too. I started going to blood tests much calmer, knowing that actually if I just relaxed things would be much better. The "sharp scratch" actually did become less painful (I'm not sure if that was a physical thing or a mental thing) and I pretty much never bruise now, I'm convinced this is because I am more relaxed. I also think that even though the phlebotomists that I see are very good, I think it must put them under pressure if they see someone stressing out in front of them. 

There was a further complication, in that when I was in hospital I had to face an extension of blood taking, which was having cannulas inserted into various parts of my hand/arm/leg. This was actually far worse than the injection, because these needles lived inside your veins for ages. I do still struggle with the cannula concept a bit, but again I have evidence that they didn't kill me. So I had to do the facts-based chat with myself on this subject too.

So for me, confronting my fear with loads of facts based on experience of what had happened in a couple of dozen blood tests and getting those facts embedded in my brain is what took away my fear of needles. Don't get me wrong, I don't breeze into the blood clinic shouting "whoopee, a blood test", but I view a blood test now as very much a transactional thing. Nothing to worry about. It has completely transformed this part of my life.

Of course the above tips won't work for everyone, perhaps I was lucky. If you hate needles, it is worth trying to understand exactly why and then try and confront those fears with some facts based on some evidence of what has actually happened to you. You never know, you might end up like me, a more sane person when faced with the sharp scratch.

May 2016 - why have a pituitary blog?

I was reminded today that I have a blog - one that I started nearly 3 years ago when I was first diagnosed with my pituitary tumour. But why did I start it?

Well I think at the time, it was cathartic. I had a lot on my mind and I decided that writing it down might help me make sense of all that was going on. After all, I had just had my first ever stay in hospital, my first ever surgery and my first ever tumour! I had never kept a diary, and still don't, so sharing my inner-most feelings wasn't a natural thing to do for me. But once the words started flowing I decided why not make them into a blog. Which indeed I did.

My initial reasons once the first  few posts had come out, was that actually it made keeping friends and family updated really much easier. They could read my blog and see how I was doing, so it took away those awkward conversations where someone was not sure what to say in case they got it wrong. They could read the blog, see that I'd been having a hard time and get straight to the point. But then I realised as the weeks ticked by, it really helped at a practical level to look back and see what happened and when. Often I'd think "when was that appointment" or "what exactly happened at that point" - and there it all is captured in my blog.

I know for sure now if I hadn't written it all down, whether in a diary or a blog, I would have forgotten some elements of the story and although it might sound a weird thing to want to remember, it does help make sense of events in the here and now. Something of which I will come onto in a moment.

I also had the grand idea that writing this all down and putting it on the Internet might actually help someone. I've had various conversations in the last 3 years that prove on a few occasions it has indeed been helpful for people. That I am pleased with, certainly when I started Googling my symptoms soon after it first was reported that I either had a pituitary tumour or something wrong with my adrenal glands, I found web pages that talked factually about the conditions. But what I did not find so easily was 'real people' who had the condition and how it made them feel. Searching now only 3 years later, I do see more such blogs and I am much more into Twitter now and much feedback can be found there too.

So if you are reading this blog, then I hope I am making sense :-)

So even now, can my blog help me see something that I might not otherwise have done? Well yes, it can. I had a brief Twitter conversation with someone (hi @hwganendodoc !) who had just found the blog, so it made me go back and have a look at a few of my early posts, these two in fact:

My hospital stay after my pituitary operation
http://chpituitarytumourblog.blogspot.co.uk/2013/07/may-2013-hospital-stay.html

The events leading up to my 2nd stay in hospital
http://chpituitarytumourblog.blogspot.co.uk/2013/07/june-2013-another-trip-to-hospital.html

So, post number 1 was a very scary time, no doubt about that. But although it signalled a difficult time for me, the overall feeling looking back on that time was that it was about healing and getting better. Getting better from something I barely knew I even had, bearing in mind I only had my MRI scan on 18th May and on the 28th May I had the operation to remove the tumour. All a bit of a whirlwind. But it was a positive period of time, fixing me up and looking forwards.

Post number 2 is altogether different. It is about living with Adrenal Insufficiency. The harsh fact, which I often overlook, is that my pituitary gland was damaged by the tumour and as a result will probably never fully work again. This means I do not produce enough of my own Cortisol and have to take Hydrocortisone tablets on a daily basis. I don't really think about it that much, pop some pills every day and that is that. I know that if I stopped taking the tablets I would get ill, which of course I wouldn't do on purpose. But when you get unwell, as I did in the events leading up to my 2nd hospital stay, adrenal insufficiency can turn something quite innocuous into something life threatening.

Now it really stops me in my tracks typing that last sentence, because I don't think of myself as having a life threatening condition. But reading back my post from that hospital admission and chatting it through with my wife earlier, really made me remember just how unwell I was. "All" I had wrong with me on the surface was a throat infection (sinusitis and pharangitis) nothing that a few paracetamol wouldn't cure. However, in a 'normal' person their body would also trigger a very clever endocrine system into action. The body would recognise that it was under stress from an infection and the pituitary gland would tell the adrenal glands to pump out cortisol and keep on doing it until the body reported back to the pituitary gland that all was well, and to pack it in (a feedback loop). However, my body didn't do that, so a simple infection put me in hospital. 

I realise now that the sickness and diarrhoea I had was actually my body not coping and having an addisonian or adrenal crisis. The fact I can't remember a fair bit from that day (so my wife tells me), the fact that when she spoke to the doctor on the out of hours service about what was happening he immediately phoned A&E and booked me a bed and told my wife to drive me immediately to hospital was a pretty big clue. The fact that when I got to hospital I was immediately put on IV antibiotics and fluids, that I also had hyponatremia and partial renal failure don't paint a particularly good picture of the day.

So what reading my own blog has helped me realise is that although I'm not going to worry about my condition any more than I have been for the last 3 years, I most certainly should not take for granted what needs to happen if I feel myself getting into an adrenal crisis. I carry quite a few Hydrocortisone tablets around with me and I carry my emergency steroid injection kit with me too. 

If you are still reading by now, and have adrenal insufficiency and you haven't got an injection kit - blooming well get one! This is something I have read quite a few times from patients, they have been diagnosed with adrenal insufficiency (even primary AI, Addison's Disease) and have been several months without an injection kit. I can't overstate how much you should get one. I've never had to use mine yet, but I'm guessing it will happen one day, or my wife will have to use it on me. If I had an injection kit way back in June 2013, would my outcome have been any different, who knows. Speak to your endocrinology team and I'm sure they will sort you out with a kit, don't rely on your trusty GP to know you need an injection kit, GP's are absolutely brilliant, but you may be the only AI person in the entire population of their patients, so they may not be as clued up as your endocrine team.

What I most certainly know now, is that after my first stay in hospital I started to recover quite quickly given the operation I had just had. But during and after my 2nd stay in hospital I felt really really awful. It took much longer to recover from an AI event than it did from major skull-base surgery. If that last fact doesn't drive it home to me then nothing will.

So there, that is another blog I've got off my chest.

For the 3rd anniversary of my pituitary tumour operation I shall raise a glass to the event from somewhere in the Mediterranean sea, on a cruise ship. 

Cheers!

February 2016 - 3 years have passed

I noticed that it is nearly 3 years since my initial blood test that flagged my low Cortisol. The blood test was on 7th February 2013 and the doctor rang me (actually my wife) on the 8th February causing panic in the Hall household. 3 whole years, what a lot has happened in that time.

I still think back to all the complications that I had and ignored prior to that bloodtest, such as the near passing out, the strange vision issues and the lack of body hair. But 3 years on, the life I now lead is much healthier with the right hormones within me - it is amazing what a difference two daily tiny Hydrocortisone tablets per day can make to a person. For me the main difference being much more being mentally alert and not having panic attacks and nearly fainting due to low blood pressure. Just those two tablets to keep me going, it is a minor miracle of modern science really.....not that long ago - maybe 100 years - I may not have been so lucky. Actually just looked it up on Google, it seems Hydrocortisone was only invented in the 1940's by this man https://en.wikipedia.org/wiki/Percy_Lavon_Julian

The biggest difficulty I face, and anyone replacing hormones faces, is trying to mimic the way the body would naturally produce Cortisol. It is still a bit of a mystery to me and to medical science, under exactly what circumstances the body will pump out Cortisol. Yes there are definite instances such as stress and infection that causes a raised Cortisol output, but for me I can still hit a Cortisol low unexpectedly, when the body has decided to burn through a tablet dose quicker than usual. Recently having faced bereavement of a loved one (my father in law) this was of course expected, the brain is going through a lot of hard work and amending my dosing regime is understandable and warranted.

Actually I didn't need to take extra doses, but I needed to amend the times. I normally take a dose on waking which is around 7am weekdays and 8am at the weekends and then around 12:30 to 13:00 and around 18:00 for the final dose. Instead although I still take the first dose at the same time, I take the lunchtime dose at the time I NEED it. That may sound strange to anyone who hasn't got adrenal insufficiency, but essentially I take my next dose when my body says 'enough', which this last week or so has been around 11:30 to 12:00. Then my 'teatime' dose gets taken again when my body asks for it, which for instance today was around 16:15. I have learned that Hydrocortisone stays in the body for around 5 hours. So 8am until 13:00 is 5 hours, but today with the extra work and stress I'm putting my body and mind through I burned through it quicker. I find that in the evenings when I am less physically active I get by without issue - sitting here now at 21:45, five and a half hours after my last dose I feel fine. I seem to have a greater tolerance in the evenings, and I don't wake up dragging my knuckles across the floor either, or else I'd consider slipping in an extra dose. I will have to monitor myself closely on Tuesday though, that is the day of my father in laws funeral.....never been through one of those whilst on Hydrocortisone - it is going to be a long day!

So all in all, the last 3 years has been eventful, but I am in a good place. Let's hope it stays that way.

September 2015 - Man vs Hedge year 3

Well, you might imagine that after all this time, I'd have mastered the art of hedging wouldn't you. Not quite.

As it was bank holiday weekend last week, it was the traditional hedge cutting weekend, but in fact it was never going to be that much of a hedge weekend because in fact I needed to spend time around my Dad's house clearing it out before the final house clearance on Thursday last week. So I only had one day at cracking the hedge and one day was never going to be enough to do it all. So in my own inevitable way I went at it with some vigour.

The good thing was that following last years false start when the shears I was using proved utterly useless we bought some new one's and these came out of the shed in pristine condition, razor sharp and raring to go. So I did the main face of the hedge and hacked away at it with quite some speed. In fact within about 3 hours I had completely finished the whole side of the hedge. It was a never seen before feat to be honest, I felt absolutely fine and a massive bag of conifer rubbish was produced in no time. Definitely a sign that my body was fitter than it was and my Cortisol was lasting pretty well.

On the Cortisol front, I haven't had a serious energy crash since I can't remember when exactly, I think it must have been early June. The hedge activity became a subject of my yearly blog because it was the one thing absolutely guaranteed to run me out of Cortisol but it certainly didn't on this occasion. However, the hedge wasn't finished yet....so it could prove to bite me before the end. But the big positive is the way my Cortisol levels are holding up no matter what I throw at my body and this is good news. I'm not exactly sure why, but I assume my body is used to the Hydrocortisone regime I have got myself in and the drug is being absorbed correctly.

So today was another few hours, and whilst doing the side of the hedge would have done me in once upon a time, the top of the hedge is an absolutely killer. When freshly cut the hedge is about 6.5 feet tall, it puts on between 1 to 2 feet every year and more than that in places. I am 5 foot 6. So there I am balanced up a ladder leaning across the top of this hedge with secateurs, pruning saw, lopping shears and a 'long-arm' aluminium pole trimmer thing. It is physically tiring at the best of times and this time although I didn't have a full on Cortisol crash I did start to feel the beginnings of one. So a sit down mid afternoon with a bite to eat and a cold drink (squash!) and I got though to my tea-time dose of Hydrocortisone without a big deal. It was a close call between being normally worn out and a Cortisol event. But I didn't push it and stopped at around 4.30pm and took the spoils to the tip. The top of the hedge still isn't finished, but there was significant growth, so not surprising. Growth not just of the hedge, but of ivy and next doors brambles growing up through the hedge.

So the hedge does take a slight win today, with my win on the bank holiday weekend, we'll have to call it 1-1. With all to play for when the final part of the top is done, maybe this coming weekend depending on the weather.

So the learning? I still need to get a bit fitter!

July 2015 - Latest check and update

Well hello there.

This year is rushing past, I can't believe it is nearly mid-July. I love this time of year and don't want to it move past this point, but such is life!

This Friday 10th July, I had an endocrine MOT - time to go and review my body's performance over the last few months. In the last few weeks I've had some blood tests and an MRI scan to check the pesky tumour is still behaving itself. The short story is that I'm doing fine and everything is doing very well - which to be honest is fantastic news. I didn't really stress about it beforehand, but when your consultant says to you all the good things, you can't help but be a bit relieved. In fact I had probably underestimated how much of a relief it was, silly really but only natural I suppose. There were a couple of main reasons....

1. The eye
As I have reported before, I have slightly more fuzzy vision in my left eye. I noticed this last year when I had some new glasses made up and I think in the back of my mind it was either because the pituitary tumour had damaged my optic nerve previously or in fact because it was regrowing and starting to squash my optic nerve again. Now the latter scenario was pretty unlikely because in early 2014 my MRI scan showed that there was only a small residue of tumour left. The chances of that getting so large in a little over a year that it would once again impinge on my optic nerve was pretty slim, although not impossible. So hearing from my consultant that they had compared the 2014 scans against the latest scans and detected no change in the amount of residue tumour left, was very good news.

I think I have sussed the eye thing out now. It probably was damaged by the tumour pressing on the optic nerve, the damage was done before I even realised. After the operation the focus (no pun intended) was on my visual fields and sorting my hormone balance out. Not my actual vision. So life went on, I had got used to the vision I had. Then during late 2014, I had my eyes checked and changed prescription and at that point expecting better vision realised that my vision was still a bit blurred in the left eye. So only at this point did I really notice it. The good news is that the eye consultant doesn't think it is degenerative, it is just damage that occurred and that's that....and if he is right then it's fine. I'd rather not have the damage, but I have grown accustomed to my eyesight now and it hasn't got any worse since I've noticed it. So I will go back to the opticians at some point and see if they can tweak my prescription to get me a bit better. It is amazing how the brain can compensate though, looking out of both eyes I rarely notice anything. It is only when you cover the right eye up and really focus (pun intended) on my vision that I realise it isn't quite up to par. So now's the time to move on and forget it I think!

2. The fear
I think the fear will always be there, these tumours can regrow. But they are benign and I am being monitored regularly, so even if it does regrow it isn't going to get as big as it did before and cause as much as of an issue as it did. So a valid worry, but not one I'll lose a lot of sleep over

Overall though I have been feeling REALLY well. It is something we all hesitate to say because we perhaps believe as soon as we say it out loud the gods of 'sods law' will crash down upon us and bring in a reality check. Well there you go, I've said it out loud now, although I did wait until I passed my MOT. I'm not sure exactly why, but as soon as I went on holiday in early June, I haven't had one cortisol related energy crash. I was having them fairly regularly ever since, well ever since for years.....it is only since mid-2013 I've realised what they are. The only thing I have changed is having my morning dose a bit earlier, as soon as I get up and before my breakfast rather than after my breakfast. It isn't long, probably 30-40 minutes difference in dose time. I try to do the same with my lunchtime dose. Can it really make this much difference, who knows, but I haven't changed anything else. This has spurred me on to get a bit fitter still if I can, I'm not going to go mad, but if my body is up for a bit more then I'm going to push it a bit harder and see what happens. 

Blood test wise I'm also on track. I've been having Testosterone injections since late last year instead of the gel and they seem to be working fine as well as being much more convenient than rubbing gel on every day. Apart from the inconvenience, the gel was also beginning to really irritate my skin, so the injection makes more sense. It does spike my testo levels somewhat, because you go on a steady downwards curve for the 10 weeks the injection lasts, then 'boof' you have the injection and the levels whoosh up. It is a bit sore in the bum-cheek for a couple of days too, but nothing too bad (I have to moan a bit, I'm a man). My latest testo graph did make me smile a bit, I have had 3 blood tests at the end of the 10 week periods to check the hormone levels, and the most recent test was just after the injection - obviously levels were going to be a lot higher. Check out that zero reading back in February 2013!

What man wouldn't want a Testosterone spike like that! It is 'manufactured' of course, but nonetheless the fact the graph is steadily on the rise, shows that my lowest levels are now not so low....and my consultant said that despite how the graph looks I am within the right range. It is most probably also contributing to my feeling of wellbeing. I don't think you can underestimate the effect testo has on mental wellbeing as well as physical wellbeing...being able to build some strength is one thing, but being much more positive is pretty useful too.

So the summary is, feeling pretty epic.

Another thing I noticed was that for a couple of years before diagnosis I had a couple of brown patches on the side of my face and neck, real skin discolouration. It looked like a part of my skin had a sun tan, when the rest of me was much whiter. I now realise this was a symptom of lack of cortisol, more commonly seen in Addisons Disease. The pigmentation has faded almost entirely now, not completely gone but hopefully it will. It was only recently I even realised it was connected. I wonder how many more things will manifest themselves? Me forgetting to bring things downstairs my wife asked me to, forgetting to buy something at the shops my wife asked me to.....they're all getting blamed on lack of cortisol now. For as long as I can get away with it.....which knowing my wife, won't be long!

So I'm off, catch you again soon! Cheers, Carl

June 2015 - the old and new me

So what have I been up to lately, well enjoying life that's what!

I've been on a cruise to Norway and this week been on a couple of days out and I've never felt better. To illustrate a point I found a picture of me from 2008 wearing the same suit on a different cruise ship as the suit I wore last week on holiday. To set the scene, in 2008 I knew nothing of what a pituitary gland was, nothing about Cortisol and the important job it did for your body. But what I did know was that I had some funny eyesight problems, which had been investigated by an eye specialist. He had a good look at my eyes and found nothing amiss - but I know now that what I was experiencing was some early disturbance of a pituitary tumour pressing on my optic nerve.

During the few years preceding my diagnosis how many times did people say to me "are you okay, you look a bit pale".....and of course I turned around to them and said "yes, I'm fine". Well any changes would have been very subtle and neither my wife nor I would have seen them, other people were far more likely to spot when things didn't look quite right. On the left below is me from 2008, I can see now that I look very pale and much thinner in the face (in 2015 much rounder face and ruddy complexion....and I hadn't been on the wine at that stage of the evening). I weigh pretty much the same now as I did in 2008, so I haven't put any overall weight on. On the right is me last week, I've even got a bit of a double-chin....but oddly that makes me kinda happy! On the left it looks like my neck was so thin I couldn't even make my bow tie sit straight.

Okay, I can make a joke of it now and it isn't exactly a scientific study. But both my wife and I looked at these two photo's and it shocked us a bit. In the 5 years between the photo on the left being taken and the tumour coming out, how much bigger did it get....how much less damage would it have done if it had been discovered earlier. Makes you wonder. 

The first time he saw me my Endocrinologist said I presented looking like the typical pituitary patient, very pale and thin faced, now I really see what he meant!

May 2015 - two whole years!

Yes, you heard it right. Two whole years since my pituitary tumour was removed, the 28th May 2013. So what then, does two years mean anything?

No not really - as time whizzes by the memories of all but the most horrible bits fade away, the times when I was less than 100%, those days/weeks leading up to diagnosis are a blur and only the most memorable spikes remain. In chronological order I think it boils down to this:

(nothing much pre-hospital at all, it just hadn't sunk in or seemed real)

• Sitting with Dr Kar, him telling me it was definitely a pituitary tumour, showing me an MRI scan of my head and pointing to the mass. Saying it would be best if it were removed.....he'd refer me to a neurosurgeon
• Sitting on the hospital bed being admitted, going through the consent form with the registrar and the things that could in theory go wrong with the operation
• Being given a 'nil by mouth' sign by my bed (advanced notice the operation was a reality)
• Being wheeled down a corridor in my bed to the operation
• The anaesthetists trying to get a line in me to put me out prior to the operation
• Waking up after the operation and looking into the face of the nurse in the recovery room (forgotten the name, will never forget the face)
• Finding I had about 5 cannula's hanging out of my body
• Leaving hospital (which was good, but scary)
• Getting diabetes insipidus (bad)
• Getting admitted to hospital a second time with an adrenal crisis (also bad)
• Waking up with an oedema in my legs (definitely not good)
• Sitting back in my living room after the 2nd hospital visit feeling the weakest I have ever felt in my life
• Getting the results of my short Synacthen test confirming I didn't make enough Cortisol and probably never would
• End of 2013, finally feeling that my life was back on track, feeling fitter than I'd felt in ages and hormones balanced (good!)

So there you have it, the most memorable moments laid out. I've blogged about all of them at some point - but now? Well to be honest I still think of myself as one of the lucky ones, I take two hormone replacements and am fit and healthy. I don't have any complications from taking the hormones that I take, and I haven't got any other long term conditions right now and long may that continue.

I do still have my moments of annoyance with my condition and rebellion but I suppose that is only natural.

So the summary of all that is:

• A lot of 'stuff' happened
• It was a long time ago now, water under the bridge
• The NHS totally rocks!
• I've come a long way and I've good health and fitness
• It could be a whole lot worse!

Cheers, Carl