I wish you all the best of health! Trys

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 16,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 6 sold-out performances for that many people to see it.

Click here to see the complete report.

Wow, that's longer than I thought.

The Endocrinology department that I go to is at The Christie in Manchester (UK).

This coming Sunday (10th July) they are holding a Christie Manchester to Blackpool Bike Ride. That’s over 60 miles.

Anyhow, I’m going to have a go at doing it. Silly me. It’s going to hurt! I won’t be able to sit down for a week I’m sure.

Anyhow. If you’d like to follow my progress, and push me along with your support, then please visit my page for my bit in the event at www.justgiving.com/trys/

Just over a year ago I had my surgery to remove a macroadenoma, so I really want to support The Christie in this.

It’s quite amazing the work of the endocrinlogists, and the research they do!

Thank you.

Trys

It’s hard to believe it’s been a year. It seems so recent in a way to some extents, but I’ve really been enjoying things.

I’m basically a lot more “chilled out” that I have been for a long long time. At the same as being “chilled out”, I’m getting more done too. Things are going very well with me at work, and my wife and I are planning on doing some home improvements too. The holiday dates have been put in the calendar and so we have all to look forward to.

A bonus of all this is that if I ever wanted to be a stand-up comic I’d probably have enough material (in making fun at myself) for at least thirty minutes. Having said that, the stage of life is just one big stand up. The trick is to keep everyone around you happy and to stay standing as long as you can!

The OGTT test showed suppression of GH to less than the sensitivity of the assay (<0.3 ug/ml), and my IGF-1 was bang in normal range at 180 ug/ml. The MRI scan showed a clearly distinct healthy stalk to the pituitary gland, no compression of the optic nerve. There was a little material below the pituitary fossa, which is down to the packing used to seal up the little hole just below the pituitary. My other blood test values are normal too. The professor was delighted, and indeed so were we.

So after that lot, I’ve got wonderful news: I’m officially totally in remission (or ‘cured’) of acromegaly.

The test criteria are so strict, this essentially means that this is in all likelihood the end of my difficulties with acromegaly. It’s not likely to recur, so I can move on now and get on in improving my general health, and grab life by it’s horns once again, and hopefully “make a difference” in some way to help others. It’s the combination of tests, these low limits, and the timing that gives this level of assurance that I’ve been so very much been waiting for.

My wife and I enjoyed a bottle of champagne that night to celebrate, as it is reason indeed to be incredibly delighted.

On Saturday, I celebrated in my own little way by cycling on my new bike from Warland (on the way to Todmorden) to Manchester Picadilli. It was a cycle of some twenty miles, taking about two hours. Ironically there were people collecting for The Christie, so I told one of them that what they were collecting for was indeed very worthwhile, as indeed I was one of their patients who had just received the news of my ‘cure’.  If you’d like to donate to Christies: http://www.christies.org/donate/

Indeed, one of my inspirations in starting this blog in the first place was reading one by a lad called Jason who has acromegaly. He mentioned his cycling in his blog, and I was amazed at the time, that despite his condition he was doing so well and even mountain biking. Hopefully I can follow in his (rather large) footsteps!

Thank you to everybody who has helped me in this two year journey, you all know who you are.

I especially wish to thank everyone who prayed for me, my wife, my family, especially Carys (my sister for spotting my condition), Dr Simon de Vial (my great GP who took my big shoes seriously), Susannah Rowles (my first endocrinologist who established the diagnosis, and went the extra mile including answering my many questions),   Sister Bernadette James (who saw my bottom regularly every month for my injections), Professor Peter Trainer (my brilliant red-socked endocrinologist, who has had to put up with my seemingly endless questions and answered each one with cheerful assurance), Kanna Gnanalingham (my steady-handed neurosurgeon, and the proud owner of one of my funny T-shirts and for having an amazing Scrabble-beating surname), Margaret Roberts (my very patient Acromegaly specialist who’s a real gem), Steve McGlynn (who raised my spirits when I was a medical guinea pig, along with Vinny), Dr Pravine Partha (for his very caring manner in keeping me calm during the rougher parts of my recovery), and all the nurses and support staff at The Christie, Salford Royal Hospital. Finally, and Minden Family Practice. I wish to thank you, my reader, for reading this! Phew!

The majority of us diagnosed have a ‘biochemical cure’ with treatment. So, if you have recently been diagnosed with acromegaly, then take heart. As long as there is still faith, there is hope. Just don’t panic, take each test and procedure one step at a time. There is life after diagnosis! Whoohoo!!

It’s still in normal range at 226 ug/ml. Phew!

Indeed, the normal range for the assay they use (for my age) is up to 267ug/ml from what I understand. It’s pretty much the same value as my blood test three months after surgery (at 220 ug/ml).  If the testing method has an error of around 5%, then measured differences in values of 10% are not very significant.

I’d be a bit happier if my IGF-1 value was a little lower. As it stands it’s possibly nudging into the upper end of the normal range. I’m glad I’m being so very well looked after.

I have a full “day curve” coming up next week, and an MRI scan, which will give a more complete picture of how I’m doing.

It turned out that it was only an appointment for a catch-up with one of the doctors there. I didn’t learn anything new that I hadn’t already been told, and I’m not sure if I had any news either.

Silly me. They took a sample of blood anyhow, so from that they’ll be able to get my IGF-1 level.

I was told I should exercise more, and lose weight. Excellent advice, and one I will endeavour to heed.

A colonoscopy is a great opportunity to get to know your bathroom a lot better.

As I have acromegaly, I’m at greater risk of having polyps on my colon (large intestine). Colonic polyps are, in a way, little fleshy bits (like little ‘skin tags’ or overgrown spots) that grow inside the colon. Often these polyps don’t do very much, but they can lead on and become cancerous. So yesterday, I had a colonoscopy to see if I had any polyps or anything else wrong with my colon.

Three days before the procedure, I had to avoid high fibre foods.

The day before the procedure I had to take the laxative ‘Citrafleet’ (Sodium Picosulfate) to ‘prepare’ my bowel.

Armed with three packs of toilet paper (yes, ‘packs’, not rolls), I took the laxative, retreated to the toilet, and waited for my bottom to explode.

I was thankful to the inventor of the flushing toilet and even more so that I hadn’t indulged in a curry the previous night.

I was allowed have a limited amount of low residue non-fatty foods up until lunch time. Allowed (amongst other things) are boiled or poached eggs, white bread, and sieved soup.

Sieving minestrone soup is an experience. The stuff left behind really takes you back. That reminds me why I don’t like cider.

The laxative worked. Oh yes. The rumble and eruption was on par with an Icelandic volcano. A ‘no-walk zone’ of twenty paces around the bathroom resulted. The consultant had told me it would be like dynamite. I was not to be disappointed. Dynamite it was. I almost had to hold onto the seat.

In all fairness though, I had expected this, and amongst my armoury was plenty of toilet paper, and I’d put a book and a newspaper in the bathroom before I’d taken the first laxative. I’d also bought moist toilet tissues too. I took the second laxative at four o’clock in the afternoon, and just had a bowl of jelly after that (jelly was allowed!).

So the day of the colonoscopy arrived. The procedure was explained to me by a nurse practitioner, and by the specialist (PF), consent forms completed. I dressed into a hospital gown, and went into the room for the procedure.

The room had a hospital trolley/bed, a great big computer monitor, and some apparatus on the other side. I guessed that was the ‘telescope’ or ‘endoscope’. I didn’t look at it too closely, just in case I scared myself! I had a cannula put into a vein of my right arm, and I was asked to roll onto my left side, and bend my legs with my knees up. I had a sheet covering my lower body to protect my modesty and I didn’t feel too self conscious or embarrassed . A tube with a sponge supplying oxygen was put just up my nostril. It smelt really ‘plasticky’. The specialist administered a painkiller and sedative using the cannula that he’d put in.

I was facing the screen, so I could see the view of the scope. The scope itself was obviously warmed to body temperature, and although a very strange disturbing sensation it did not physically hurt.

I could see the images on the screen, and quite soon I was more interested in what was on the screen than anything else. It was quite fascinating! It was like having my ‘head up my own arse’ (if you pardon the expression)! It was really well lit, I’m guessing the sun really does shine up there. It’s a strange land of very convoluted pinky-white tubing. The laxative had worked really well – I was quite impressed.

I had a little discomfort a couple of times, feeling like trapped wind, and the specialist stopped and administered more sedative or pain relief (I didn’t know which). The nurse was writing down the doses as he was giving them. On occasion he’d see something on the wall of the colon, then he’d squirt it with water, then it would go again. He explained that they were food particles. Now and again the image would go completely pink, and I expect that this was when he was ‘turning a corner’ in the colon (it has two or three bends).

Anyhow the specialist got right to the end of the colon, and then retracted and inspecting on the way back. If you’ve ever gone on a tour of an underground cavern, it’s always a shame when you get to the end, and have to turn back!

I was rolled on my back, and wheeled to the ward to recover, for them to keep their eye on me (and check my BP and O2) . I didn’t feel particularly sedated, and neither had I through the procedure.

The specialist explained that everything was normal. Excellent!!

I got changed, was given a small aftercare leaflet on the procedure, and my lovely wife took me home. They said that a responsible adult would have to keep an eye on me for the next 24h or so. My wife would have to do. (Only joking!).

So in summary: A colonoscopy is not half as bad as you might imagine. Many people are so well sedated they don’t even remember it. I found the view really interesting. It pays to plan ahead a little for the laxative day. Moist toilet tissue is great.

PS Apparently Thomas Crapper did not invent the flushing toilet, I was surprised to find. It’s the kind of fascinating detail to ponder after spending a day of your life on the porcelain throne.

PPS: The lighter side of a Colonoscopy: Billy Connolly, Homer Simpson, Robert Klein

It’s still really good news!

My random fasting Growth Hormone (GH) was 0.4 ug/ml, and the Glucose in the OGTT suppressed my GH to 0.3 ug/ml. I wish in a way this suppression had been better, but it still “passes” as far as the new stricter classification of remission goes.

The great thing is that my Insulin-Like Growth Factor-1 (IGF-1) is a very normal 205 ug/ml (smack bang in the normal range for my age). It’s this IGF-1 value that paints the picture of what my GH is up to generally, so this is an excellent value!

Oh, happy day!

(Click the links below to see them in the diary entries)

Four hours after surgery

The day after surgery

Hopefully the images will be of comfort or encouragement to those who are about to have their surgery, or if you or somebody that you love has just been diagnosed with a pituitary tumour.

Trys