August 2016 - Pituitary update

Well what's this, an actual pituitary update in my pituitary blog, whatever next.

It is now well over 3 years since my pituitary tumour bit the dust, and I am still under the watchful eye of my Endocrinologist. Making sure that my blood tests, replacement hormones and residual pituitary tumour are still in the shape he expects them to be. That's the thing with the NHS, they spend a lot of time and effort getting you diagnosed, a lot of time and effort to fix you, but then they don't just wave you out of the door and say "go get on with it"......no, in fact I have had so much follow up. Something you can't ignore in the value our NHS gives us. I have had countless blood tests, several MRI scans, visits to my Endocrinologist....all costing valuable time and money. All to make sure that I am in the best health I can be and that the tumour doesn't come back and bite me. I think that we perhaps take the NHS a bit too much for granted, but that's another story.

Here's another 'hidden' cost of my treatment. I am 'lucky' in that I have a condition that means I get free prescriptions - I assume it is because Hydrocortisone keeps me alive. This benefit isn't means tested, it is mine by right in the current system. This means I avoid the £8.40 every time I go to the chemist. I take 2 Hydrocortisone tablets every day, rarely a bit more than that. My prescription gives me 122 tablets every 2 months, there's 30 in a packet. So in simplistic terms, every year I would have had to pay 6 lots of £8.40.....not the end of the world to keep me alive. But unfortunately this drug is one of the one's that went 'generic' several years ago and far from saving the NHS money, it actually costs them a fortune. You can see from the link below my packet of Hydrocortisone actually costs the NHS £78.50

http://www.evidence.nhs.uk/formulary/bnf/current/6-endocrine-system/63-corticosteroids/632-glucocorticoid-therapy/hydrocortisone

So I pay nothing for my 3.5 packets of tablets each month, I could have paid £8.40 on a prescription, but the NHS pays £274.75 for 3.5 lots of £78.50. Scandalous! I understand on the continent the equivalent for a similar drug by a different manufacturer is only a few quid.

Anyway, rant over, what about me. 

My PSA (Prostate-specific antigen) test was fine, my Testosterone levels are fine, my Cortisol is fine (I'd soon know if it wasn't) and my MRI scan shows that the residual amount of tumour left over has not grown at all since the last scan. So it is all good news. I will still be on 6 monthly check-ups until 5 years since tumour removal and then if all is still well, then I can get less regular check-ups and only go back if something is specifically worrying me, like vision changes or headaches (both a sign that the tumour could be re-growing).

So I don't have to worry about the pituitary side of things. Yes I still have to keep taking the (expensive) tablets and injections, and I still have to carry around my emergency Hydrocortisone injection kit, but that is just part of 'me' now. Fitness wise, I continue to creep ever forward, I'm still doing the Pilates, loads of walking and a bit of light weight training (I think the last one is more for vanity than anything else, but it makes me feel better). I sometimes forget that at my lowest ebb before diagnosis, I couldn't walk for 2 miles in half an hour without feeling faint....probably 2 miles would have taken 45 minutes not 30 minutes. But anyway, looking forward not back.

The future is bright.......

August 2016 - Man vs Hedge year 4

Well, another bank holiday weekend, another Man vs Hedge blog post. You'd surely expect such an update by now. This years is going to be slightly different, because this year it isn't all about Cortisol it is more about accepting that sometimes the right tools for the job make all the difference.

This year I didn't have any issue with energy crashes, Cortisol lows or any of that nonsense. I adjusted my dosing appropriately so although I didn't take any extra during the day, but I did split my dosing differently and spread it through the day in smaller regular doses. In that respect, preparation and accepting that a change in dosing WOULD be necessary (not "might" be necessary, or "lets see how it goes"). Accepting that made life a whole lot easier.

But what made the whole task SO much easier this year was the use of a better ladder and a better hedge trimming device. Sadly Deb's dad passed away earlier this year, but he had a battery powered extendable hedge trimmer. We have our own corded electric hedge trimmer which never worked on our hedge, it made a right mess of it. So for years I used manual hedge shears as they did a much better job, I didn't expect any electric trimmer to be up to the job, conifer hedge seemed to immediately blunt our trimmer. But for whatever reason, I tried the 'new' hedge trimmer out and it was like a hot knife through butter, it was a complete revelation. Plus there was no trailing lead to a) have to plug in and get in the way and b) Deb didn't have to worry about me cutting through the power lead (I never worried about cutting through it obviously). Tools for the job pictured below:

I tried the new trimmer out just to see how it would fare, and rather than just "try it out" I ended up trimming about 40ft of the hedge so quickly it was amazing. So when it came to the bank holiday weekend just gone I managed to completely do all of the side and top of the hedge over 2 days. I did get a bit wet as it rained on the Saturday, but never mind. This also included a huge amount of next doors brambles which were becoming very invasive so I was really useful to be able to hack through them with the long hedge trimmer without needing to be too close and get tangled up in the thorns.

So I think the hedge is finally conquered and with the right tools it will be much easier to manage now. It might sound weird, but I have enjoyed my battles with the hedge over the years, but being able to just buzz straight through the growth is so much easier, particularly across the top - the top is probably 6 foot across, so only being 5 foot 6 tall and the hedge being around 7 foot tall it is normally quite a reach.

So maybe the last Man vs Hedge update? We'll see :-)

I have an Endocrinology appointment tomorrow, just a checkup to make sure everything is ticking along fine. I've had some blood tests and an MRI scan, so should get the results of those. I'm not expecting anything but good news, but may post a quick update later in the week.

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.