Here comes's the last update of November as we fly towards December with alarming speed, although according to the TV adverts, it's been almost Christmas throughout November.
Talking of TV Adverts, I loved the original of this advert, and I'm glad they've brought back a Christmas version #DancePonyDance http://youtu.be/_hQjo3DPPi8
By the way, my Dad is still doing ok, and is still in hospital until he has had an MRI scan. Early next week he's due for review....
So what milestone has flown by then? It was the 6 month anniversary of my Pituitary operation believe it or not - the 28th May was when my tumour was dragged kicking and screaming down through my nose (probably not all in one go!). I wonder where it is now, is it sat in some pickle jar in a laboratory, like those brains you see on the horror movies....I kind of quite like that analogy. If it really was, I'd like to go and see it because quite frankly I'd want to slap it in the face, all the trouble it gave me. I could spend many a long hour chatting to it.....well maybe not. I suppose in reality it is in some clinical landfill site rotting down. I've literally never given it any thought whatsoever until I started typing this update, strange what things come into my head at times.
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Friday 29 November 2013
Sunday 24 November 2013
November 2013 - No news is good news
Me again. I actually missed out a weeks blog, because there really was nothing much to report. Just more of the same. Feeling good, feeling energetic and healthy. I did have some results back about Cholesterol though - I have had 3 tests now. The first was probably about a year ago, and it was a bit high at 7.2, which was a bit of a bummer. Then I cut out some bad foods like butter and eat more fruit and had another test about 6 months ago, Cholesterol went up to 7.4....double-bummer!! So I mentioned this to (someone, can't remember who) who said that perhaps my hormone imbalance and Pituitary Tumour were possibly affecting the results, so to have the test redone once that was all sorted out. So I did, and it came in at 6.4. I am really happy it has gone down, and perhaps it isn't quite as low as I'd like, but at least it is an improvement. Just got to keep eating healthily and keep up the exercise.
I did have another experience with the NHS this weekend though, not for me, but for my Dad. The upshot is, he's fine, he had a fall at home and has a bit of a sore cut up face and some chipped teeth, no bones broken just his pride hurt. He has to stay in Portsmouth QA Hospital for a couple of days just to check he is ok (sudden fall, urine infection and loss of consciousness) but nothing untoward.
But the NHS once again showed how good it can be, when it is at its most stretched....A&E on a busy Saturday afternoon/evening. I arrived at A&E reception about 15:00 and although the waiting room was full up, I was seen by the receptionist straight away and directed through to the "A&E queue". The queue snaked up the corridor towards the 'proper' treatment area.
Now I've read the reports in the news about patients waiting in corridors and how terrible it is, but in reality it didn't feel at all terrible. There was a kind of 'queue triage' going on, my Dad had his observations taken a couple of times whilst in the queue and he (along with all the patients I saw) were taken out of the queue at least once to go through all the important questions in advance of getting to the treatment area. Dad had his wounds cleaned up and assessed. The nurses were really brilliant, and it's those small touches that could easily be missed, that put my Dad at ease....the hand squeezes, the warm smiles and the "there-there's" that made an 81 year old man just that bit better in the moment. You surely can't teach that kind of care, it must come from within.
When he finally got wheeled into the treatment area, we started in earnest with more observations, blood tests and then a visit from a doctor. It really was pandemonium in this part of the ward, full up with patients with such varying needs. Others like Dad who had obviously been in the wars with blood here and there, basically you name it, it was going on....
I did hear one mention from a concerned nurse, whispered to another nurse, about "4 hours", which I believe is some kind of national target for treating A&E patients. I certainly wasn't counting the hours but I reckon my Dad was definitely treated within the 4 hours and whisked through to the A&E observation ward. In all honesty though, for something non-life threatening like my Dad's injuries it surely isn't just about how many hours he spent going through the system, it was about how much dignity and respect he was treated with during his stay in A&E and whether the quality of his care was acceptable. Generally I'd say his care was acceptable (and Dad agrees) although I did have to ask for the nurse to bring him some food and drink about 7pm as Dad is a type 2 diabetic and really needed some food as it was a long time past his normal teatime.
So by the time I left hospital, getting on for 20:30, Dad had been through the "system" and was comfortable in the observation ward and safe and warm. Couldn't have asked for more.
So there you go, not just an update about me, but about my Dad and the NHS.
I did have another experience with the NHS this weekend though, not for me, but for my Dad. The upshot is, he's fine, he had a fall at home and has a bit of a sore cut up face and some chipped teeth, no bones broken just his pride hurt. He has to stay in Portsmouth QA Hospital for a couple of days just to check he is ok (sudden fall, urine infection and loss of consciousness) but nothing untoward.
But the NHS once again showed how good it can be, when it is at its most stretched....A&E on a busy Saturday afternoon/evening. I arrived at A&E reception about 15:00 and although the waiting room was full up, I was seen by the receptionist straight away and directed through to the "A&E queue". The queue snaked up the corridor towards the 'proper' treatment area.
Now I've read the reports in the news about patients waiting in corridors and how terrible it is, but in reality it didn't feel at all terrible. There was a kind of 'queue triage' going on, my Dad had his observations taken a couple of times whilst in the queue and he (along with all the patients I saw) were taken out of the queue at least once to go through all the important questions in advance of getting to the treatment area. Dad had his wounds cleaned up and assessed. The nurses were really brilliant, and it's those small touches that could easily be missed, that put my Dad at ease....the hand squeezes, the warm smiles and the "there-there's" that made an 81 year old man just that bit better in the moment. You surely can't teach that kind of care, it must come from within.
When he finally got wheeled into the treatment area, we started in earnest with more observations, blood tests and then a visit from a doctor. It really was pandemonium in this part of the ward, full up with patients with such varying needs. Others like Dad who had obviously been in the wars with blood here and there, basically you name it, it was going on....
I did hear one mention from a concerned nurse, whispered to another nurse, about "4 hours", which I believe is some kind of national target for treating A&E patients. I certainly wasn't counting the hours but I reckon my Dad was definitely treated within the 4 hours and whisked through to the A&E observation ward. In all honesty though, for something non-life threatening like my Dad's injuries it surely isn't just about how many hours he spent going through the system, it was about how much dignity and respect he was treated with during his stay in A&E and whether the quality of his care was acceptable. Generally I'd say his care was acceptable (and Dad agrees) although I did have to ask for the nurse to bring him some food and drink about 7pm as Dad is a type 2 diabetic and really needed some food as it was a long time past his normal teatime.
So by the time I left hospital, getting on for 20:30, Dad had been through the "system" and was comfortable in the observation ward and safe and warm. Couldn't have asked for more.
So there you go, not just an update about me, but about my Dad and the NHS.
Sunday 10 November 2013
November 2013 - It's all in the mind
This week, some musings on the state of my mind both pre and post Pituitary surgery.
When I first found out I was making no Cortisol and had to go onto Hydrocortisone tablets, one of the questions my GP asked was how was I feeling mentally. Was I finding it difficult to concentrate, was I less assertive at work....well I hadn't given it much thought but he was right enough. I have been concentrating on getting myself back physically to fitness, but the mental side of things is a factor as well.
When I first went onto the Hydrocortisone, my mind went into overdrive in part because I was on a dose that was a bit too high. But what was happening was my mind was suddenly buzzing with thoughts and more positive thoughts. So much so, as he reminded me recently, that my boss even wondered what drugs I was on because I was acting so differently....well the answer was "I'm on steroid's man". It hadn't occurred to me it would make that much difference. But do you know what, it is still making a difference, I just haven't been focussing on it.
Let's take gardening as an example. I'd be a fool to think that just because my hormones are balanced right now, it is going to make me suddenly love gardening. Because it is not. However, Deb and I went outside this afternoon to get some gardening done. It was cold and the type of work we were doing was heavy going, chopping down various shrubs ready for the winter. I have made much of my physical abilities now, much more stamina to keep going....but there is also mental stamina and outlook on life.
Another thing I used to get a lot pre-surgery was cold, very cold. Another symptom of not having Cortisol or Testosterone (not sure which) is feeling the cold more. So this time last year (for example) I would have got freezing cold, been mentally 'down' on the idea of gardening and when I did drag myself outside it was bloody hard work...and I used to moan, A LOT. Now however, the prospect of doing a couple of hours gardening is a challenge. My brain is thinking "let's see how much easier this will be" "let's just get this over with, it will only take a couple of hours". Now obviously from Deb's point of view, this is wonderful. A husband who comes outside to help without moaning and gets loads done. But of course I can't promise this will last, because if it stops becoming a challenge and just becomes the norm, then perhaps the old me will return. Who knows.
Talking of challenges, I had another one yesterday, we went to Discover Dogs in Earl's Court. We have been there a couple of times in recent years as well as Crufts in Birmingham. Such shows where you spend 6 or 7 hours on your feet as well as a journey before and after really knackered me out before. Yesterday was the first test, and I passed with flying colours. I used to have to sit down regularly, drink and eat regularly or else I would 'crash'. None of that yesterday, I even drove home whereas I might sleep in the car most of the way. I must say I was chuffed to bits.
Finally, Twitter served me up some unexpected spam yesterday. I got followed by an account called "Buy Androgel", which is a form of Testosterone. Needless to say that account got blocked straight away, they will have no doubt picked up me mentioning Pituitary or Testosterone in my Twitter feed, but it makes you realise how sophisticated spammers really are. But anyway Mr. Spambot, if you are reading this now, I get it on prescription, so I don't need any of yours thanks.
All in all, another good week :-)
When I first found out I was making no Cortisol and had to go onto Hydrocortisone tablets, one of the questions my GP asked was how was I feeling mentally. Was I finding it difficult to concentrate, was I less assertive at work....well I hadn't given it much thought but he was right enough. I have been concentrating on getting myself back physically to fitness, but the mental side of things is a factor as well.
When I first went onto the Hydrocortisone, my mind went into overdrive in part because I was on a dose that was a bit too high. But what was happening was my mind was suddenly buzzing with thoughts and more positive thoughts. So much so, as he reminded me recently, that my boss even wondered what drugs I was on because I was acting so differently....well the answer was "I'm on steroid's man". It hadn't occurred to me it would make that much difference. But do you know what, it is still making a difference, I just haven't been focussing on it.
Let's take gardening as an example. I'd be a fool to think that just because my hormones are balanced right now, it is going to make me suddenly love gardening. Because it is not. However, Deb and I went outside this afternoon to get some gardening done. It was cold and the type of work we were doing was heavy going, chopping down various shrubs ready for the winter. I have made much of my physical abilities now, much more stamina to keep going....but there is also mental stamina and outlook on life.
Another thing I used to get a lot pre-surgery was cold, very cold. Another symptom of not having Cortisol or Testosterone (not sure which) is feeling the cold more. So this time last year (for example) I would have got freezing cold, been mentally 'down' on the idea of gardening and when I did drag myself outside it was bloody hard work...and I used to moan, A LOT. Now however, the prospect of doing a couple of hours gardening is a challenge. My brain is thinking "let's see how much easier this will be" "let's just get this over with, it will only take a couple of hours". Now obviously from Deb's point of view, this is wonderful. A husband who comes outside to help without moaning and gets loads done. But of course I can't promise this will last, because if it stops becoming a challenge and just becomes the norm, then perhaps the old me will return. Who knows.
Talking of challenges, I had another one yesterday, we went to Discover Dogs in Earl's Court. We have been there a couple of times in recent years as well as Crufts in Birmingham. Such shows where you spend 6 or 7 hours on your feet as well as a journey before and after really knackered me out before. Yesterday was the first test, and I passed with flying colours. I used to have to sit down regularly, drink and eat regularly or else I would 'crash'. None of that yesterday, I even drove home whereas I might sleep in the car most of the way. I must say I was chuffed to bits.
Finally, Twitter served me up some unexpected spam yesterday. I got followed by an account called "Buy Androgel", which is a form of Testosterone. Needless to say that account got blocked straight away, they will have no doubt picked up me mentioning Pituitary or Testosterone in my Twitter feed, but it makes you realise how sophisticated spammers really are. But anyway Mr. Spambot, if you are reading this now, I get it on prescription, so I don't need any of yours thanks.
All in all, another good week :-)
Sunday 3 November 2013
November 2013 - Progress, knowledge and research
So another month shoots by and we're in November, can't hardly believe it.
The last couple of weeks I have been gradually building up my knowledge of all things Pituitary. I'm not sure if I'm normal, but I really want to know exactly what is wrong with my Pituitary, I feel it helps me deal with the issues that arise, and knowledge is power right? But in all reality, my knowledge is only built off of what I have been told by experts, but also off the Internet....so probably some of what I've learned is rubbish! If you are reading this expecting expert opinion then don't listen to me, go and speak to your Endocrinologist team....they really do know best.
But to carry on for a bit, here's what I've learned. There's all sorts of different Pituitary conditions, but the main two I'll focus on are non working Pituitary's and tumours. Some people are born with non-working Pituitary's and some stop working for whatever reason during life. There are also two types of tumour, either 'functioning' or 'non-functioning'. I had the latter. The way I understand it, a tumour itself may produce hormones in addition to the one's that your Pituitary produce (a hormone overdose if you will) - this is a functioning tumour. For instance, I think Growth Hormone is a common extra hormone produced by a functioning tumour, and the current tallest man in the world has/had a Pituitary tumour, and his size was due to way too much Growth Hormone.
In medical speak, these tumours are called Adenomas. Either a micro-adenoma if it is less than 10mm or macro-adenoma if it is more than 10mm, mine was a 'macro' because if I remember correctly it was about 30mm. Gigantic in other words :-)
Anyway....mine was a non-functioning tumour, in that it did nothing in the way of hormone producing, just enveloped my Pituitary and stopped it working properly. Only when the tumour was removed can the Pituitary recover, although recovery is far from guaranteed. In my case I have been left with just two deficient hormones, Cortisol and Testosterone. As I have some hormones intact, and a couple not working properly I have Hypopituitarism** but if the Pituitary wasn't working at all and no hormones were produced, then it would be pan-Hypopituitarism (thank goodness that isn't the case).
** the other thing that occurred to me today, Hypo and Hyper. Hypo as in 'under' or 'deficient'....i.e. I am under producing hormones. Or Hypodermic needle, under (hypo) the skin (derma/dermis). And Hyper as in 'excessive' - Hyperglycemia, too much glucose in the blood
So there you have it, a bit of my extra knowledge duly passed on!
I noted today a 'fire in my belly'. It is a feeling I have only felt a couple of times since being on both the Hydrocortisone and Testosterone (only been on the Testosterone a month or so). We were out walking the dog, and my energy levels were just soaring, I felt a kind of energetic burning inside me that I realise I haven't felt in....well I don't know how long. I just felt I could have run down the track we were walking and just run and run. It felt really good and put a massive smile on my face I can tell you. I've no idea whether to expect this to continue or not, and in any case who knows what the future holds for any of us, but I really do hope to have more days like today.
So you know at least two more things about me, I am a Pituitary bore....and today was a really good day :-)
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