Well, doesn't time fly when you're enjoying yourself! Today being the 28th October, means that it is exactly 5 months ago today I had my operation to remove my Pituitary Tumour. I wonder how long I will be 'celebrating' my anniversary, I assume for at least one year. The date sticks in my mind for some reason! It really doesn't feel like that long ago, but a lot has happened in the last 5 months, highs and lows, hopes and fears.....but much more positive now.
We went out with friends on Saturday night for a lovely meal on the premise of celebrating my health, which was very nice indeed. Inevitably the "how are you feeling now" question came up, which I neatly side-stepped and got my wife to answer for me. It seemed more appropriate for a different view on my progress. Deb said that I am more positive now and had much more 'get up and go' not just since the operation but also compared to how I was before the operation. I'm glad she has seen that change, because I have felt that I am much more positive, but I don't think you aren't a great judge of your own performance...not in work or life.
Also I've finally been catching up on all sorts of appointments and jobs that have been put off since early June. One of my minor niggles has been my two front teeth, ever since my operation they haven't felt "quite right". Much better now than they were, but they still feel a bit numb. The dentist said it is likely my Palatine Nerve got disturbed during the operation (via my nose) and it will probably take a few more months to settle down. Apparently anesthetist's primary concern is making sure their patient is knocked out and incubated correctly during the operation, and although they don't intentionally knock teeth around, it isn't unheard of. I think I can see the logic there! I've also booked a full eye test, having been given the all clear regarding my visual fields, I think it is time to have a proper eye test to make sure everything else is in order. I've also made an appointment to see the doctor to discuss my tingly/numb foot, as it seems keen to hang around, grrr.
About this time 5 months ago, I was sat in my hospital bed on tenterhooks waiting to go down for the operation, which didn't happen until 3pm. Sitting here now, I can very clearly remember just how nervous I was back then.
5 months on, all I have to worry about is hurricane force storm "St. Jude". Wow.
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Monday 28 October 2013
Sunday 20 October 2013
October 2013 - What is the Pituitary anyway
So, another week has flown by. It was another week of good health and fitness progress so that's certainly a good point. I was thinking about this blogging lark, having never done it before until this Pituitary thing came along, what do I do if nothing much is happening? Do I just wait until there is something happening and therefore I have something to say, or do I put some effort into thinking about what the content is going to be. Well for the moment the answer is "put some effort in"....I've got this far after all.
Something that has constantly occurred to me is how little people know about the Pituitary gland - and until February 2013 that applied to me too. Since I've was diagnosed, I have put a lot of research into what this little gland is all about and what effects it might have on me. But when people realise I have been ill and you tell them "I've had a tumour on my Pituitary gland" you can see the look in their eyes that says 'well I've heard of the Pituitary gland, but I'm not sure where it is and what it does'. Of course that is fine, it must be the same for all sorts of conditions, you don't need to know how part of your body works and it is only when it stops working you start to get involved. But for charities like the Pituitary Foundation it must be really hard getting your message across about a subject that isn't really known about. Having done some more reading on the subject, there seem to be so many variable outcomes of what you may have wrong with you depending on so many different factors. I managed to get to the ripe old age of 52 before having a Pituitary problem (diagnosed) but a lot of people suffer all their lives with symptoms. Nightmare.
I went around a friends house to watch Star Trek Into the Darkness in his cinema room. Nothing unusual in that you might think, indeed I have been round and seen many movies in that same room. However, this one brought back a few memories. I saw Into the Darkness at the cinema on Tuesday 18th June, this was the same week I went back into hospital for the second time. When I came out of the cinema I started leaking yellow fluid out of my nose, which I was worried was Cerebral Spinal Fluid (CSF).....as it happens it wasn't but it was the start of the infections which put me back in hospital. It was good to see the film again in much better circumstances, and it is such an epic film. I am not a major Trekkie, but I do like a good science fiction film, and this was was very good indeed, excellent special effects.
Last November I took part in 'Movember', which most of you will know by now is the event where men grow a moustache for November. This time last year I was blissfully unaware of my tumour, but it was most likely having a silent effect on my ability to grow a decent 'tache. I had a decent moustache for many years although I shaved it off 10 years ago or more. So I had no reason to believe growing one back wasn't going to be a piece of cake. So I signed up for the Royal Mail Movember challenge and let my facial hair do its thing. Except it didn't do it very well. My lack of hormones meant my facial hair was less than satisfactory....so why not give it another go this year. Well for one thing I'm not sure the moustache will be any better this year, and for another I think it must be someone else's turn to rattle the charity tin. Maybe by next year, my facial hair growing prowess will have returned....after all as I reported last time, my leg hair is growing so why not facial hair!! Unfortunately for me there's no such thing as Legvember though :-)
Something that has constantly occurred to me is how little people know about the Pituitary gland - and until February 2013 that applied to me too. Since I've was diagnosed, I have put a lot of research into what this little gland is all about and what effects it might have on me. But when people realise I have been ill and you tell them "I've had a tumour on my Pituitary gland" you can see the look in their eyes that says 'well I've heard of the Pituitary gland, but I'm not sure where it is and what it does'. Of course that is fine, it must be the same for all sorts of conditions, you don't need to know how part of your body works and it is only when it stops working you start to get involved. But for charities like the Pituitary Foundation it must be really hard getting your message across about a subject that isn't really known about. Having done some more reading on the subject, there seem to be so many variable outcomes of what you may have wrong with you depending on so many different factors. I managed to get to the ripe old age of 52 before having a Pituitary problem (diagnosed) but a lot of people suffer all their lives with symptoms. Nightmare.
I went around a friends house to watch Star Trek Into the Darkness in his cinema room. Nothing unusual in that you might think, indeed I have been round and seen many movies in that same room. However, this one brought back a few memories. I saw Into the Darkness at the cinema on Tuesday 18th June, this was the same week I went back into hospital for the second time. When I came out of the cinema I started leaking yellow fluid out of my nose, which I was worried was Cerebral Spinal Fluid (CSF).....as it happens it wasn't but it was the start of the infections which put me back in hospital. It was good to see the film again in much better circumstances, and it is such an epic film. I am not a major Trekkie, but I do like a good science fiction film, and this was was very good indeed, excellent special effects.
Last November I took part in 'Movember', which most of you will know by now is the event where men grow a moustache for November. This time last year I was blissfully unaware of my tumour, but it was most likely having a silent effect on my ability to grow a decent 'tache. I had a decent moustache for many years although I shaved it off 10 years ago or more. So I had no reason to believe growing one back wasn't going to be a piece of cake. So I signed up for the Royal Mail Movember challenge and let my facial hair do its thing. Except it didn't do it very well. My lack of hormones meant my facial hair was less than satisfactory....so why not give it another go this year. Well for one thing I'm not sure the moustache will be any better this year, and for another I think it must be someone else's turn to rattle the charity tin. Maybe by next year, my facial hair growing prowess will have returned....after all as I reported last time, my leg hair is growing so why not facial hair!! Unfortunately for me there's no such thing as Legvember though :-)
Saturday 12 October 2013
October 2013 - the hairy legs
So, I mentioned how it all started in this part of my blog. Essentially the reason my pituitary tumour was diagnosed, was because of my vain worry about my once hairy (and at the time, totally bald) legs. Not the tiredness, not the slightly odd vision in my left eye, not the lack of fitness, not my pale complexion....none of that. My hairless legs, pathetic really, but at least I mentioned it to the doctor and she did the right test and I got my diagnosis, so everything turned out right in the end.
Having just been out for another longish walk, 2.5 miles, this means my brain has been mulling over recent events - as I said recently I do seem to do a lot of thinking whilst walking. Don't tell my wife though, she'll have me thinking about more practical things! Having been on the Testosterone gel for nearly a couple of weeks along with the Hydrocortisone, you may be wondering how my hairy legs are faring. Well I have good news! I think it may be the Hydrocortisone that is doing it, but my hairy legs are returning....and hairy arms. It is quite hard to pin down exactly how I feel from one day to the next, but it is quite heart-warming to see some outward sign of my body changing back to what it once was.
I had a look through this site recently www.pituitary.org.uk - there's loads of great info on there and reading through some of the forums, a lot of people far worse off than me. Sobering thoughts.
Finally, social media, in particular Twitter. I have only used it for fun purposes, following humerous people who post hilarious jokes, accounts that post cute, historical and funny pictures...all stuff to lighten the day. But I've followed a few different people lately who are linked with either my condition or the medical profession and the Pituitary Foundation, and you realise just how hard these people work to move care in their areas along. You see the higher profile charities on the telly, but it is easy to forget the small guys and how much great work they do. I think it might be time to give something back....just not sure how yet. Twitter really is a great way to engage with a wide audience at the click of a finger or mouse, it costs you nothing but your time....so it has a serious side as well as a humerous side. Just like we all do :-)
Having just been out for another longish walk, 2.5 miles, this means my brain has been mulling over recent events - as I said recently I do seem to do a lot of thinking whilst walking. Don't tell my wife though, she'll have me thinking about more practical things! Having been on the Testosterone gel for nearly a couple of weeks along with the Hydrocortisone, you may be wondering how my hairy legs are faring. Well I have good news! I think it may be the Hydrocortisone that is doing it, but my hairy legs are returning....and hairy arms. It is quite hard to pin down exactly how I feel from one day to the next, but it is quite heart-warming to see some outward sign of my body changing back to what it once was.
I had a look through this site recently www.pituitary.org.uk - there's loads of great info on there and reading through some of the forums, a lot of people far worse off than me. Sobering thoughts.
Finally, social media, in particular Twitter. I have only used it for fun purposes, following humerous people who post hilarious jokes, accounts that post cute, historical and funny pictures...all stuff to lighten the day. But I've followed a few different people lately who are linked with either my condition or the medical profession and the Pituitary Foundation, and you realise just how hard these people work to move care in their areas along. You see the higher profile charities on the telly, but it is easy to forget the small guys and how much great work they do. I think it might be time to give something back....just not sure how yet. Twitter really is a great way to engage with a wide audience at the click of a finger or mouse, it costs you nothing but your time....so it has a serious side as well as a humerous side. Just like we all do :-)
Tuesday 8 October 2013
October 2013 - finally a letter from the DVLA
Well, they took their time, but the DVLA have finally written to me with their formal decision about my licence. I was convinced that the ONLY answer they could give me bearing in mind the positive eye tests I have had could be a good one, and indeed it was. They were pleased to inform me that "I may keep my driving licence". Thank goodness for that.
Also had a flu jab today, which was a first. And it seems as it was my first flu jab I also qualified for a once in a lifetime offer of a free Pneumonia jab too, one jab in each arm. The flu jab is a safeguard to try and avoid me getting the flu as my immune system relies on my Hydrocortisone tablets, so the flu is best avoided. However, it kinda makes me feel old, as in my mind only retired people have a flu jab (I know this to be rubbish, but still) - just something else to get used to.
Thinking about having the flu jab, and the slight disadvantage my body has put me in, does make me feel jealous sometimes of 'normal fit and healthy people' (whatever that means). It is a silly way to feel, but sometimes I see someone who in my mind looks a fit and healthy specimen who I believe just from looking at him is producing abundant hormones, and the thought enters my mind "you don't know how lucky you are". Ridiculous way of thinking because in fact I am in good health myself, its just that I need a bit of help from some medication to keep me that way. I won't let the negative thoughts take over, but I thought I'd share my feelings. I suppose it is a natural reaction for anyone really, "why me"......
That's it for now, just a quick update.
Also had a flu jab today, which was a first. And it seems as it was my first flu jab I also qualified for a once in a lifetime offer of a free Pneumonia jab too, one jab in each arm. The flu jab is a safeguard to try and avoid me getting the flu as my immune system relies on my Hydrocortisone tablets, so the flu is best avoided. However, it kinda makes me feel old, as in my mind only retired people have a flu jab (I know this to be rubbish, but still) - just something else to get used to.
Thinking about having the flu jab, and the slight disadvantage my body has put me in, does make me feel jealous sometimes of 'normal fit and healthy people' (whatever that means). It is a silly way to feel, but sometimes I see someone who in my mind looks a fit and healthy specimen who I believe just from looking at him is producing abundant hormones, and the thought enters my mind "you don't know how lucky you are". Ridiculous way of thinking because in fact I am in good health myself, its just that I need a bit of help from some medication to keep me that way. I won't let the negative thoughts take over, but I thought I'd share my feelings. I suppose it is a natural reaction for anyone really, "why me"......
That's it for now, just a quick update.
Friday 4 October 2013
October 2013 - I think it might be down to me now
As I've said, I have been doing a lot of walking since my operation, it has been the one thing I felt I could do to get some aerobic fitness back. One thing walking is very good for is thinking, as you're out pounding the streets your mind drifts all over the place, and today on my 2.2 mile walk (according to my phone) my mind led me to how I'm going to get the upper half of my body back in shape. I think I've been lining up the excuses not to put some effort in for at least the last year:
A year ago or so (example)
"Well, I'm over 50 now, so I'm not as fit as I was...probably no point in fighting the age this is how it will be from now on" (although of course my pituitary tumour was probably not helping me, but I didn't know about it at the time)
February 2013
"I've got a low Adreno/Cortisol levels, so my body isn't going to be up to heavy exercise. Probably best to wait until this is all sorted."
May 2013
"I've just had a big operation, it will be a while before I am back up to 100% fitness"
June 2013
"I've had another visit to hospital, it will be a while before I am back up to 100% fitness"
July - September 2013
"I'm feeling a lot better, but my hormones still need some sorting out....so there's no point in pushing my body too soon"
Now it is October 2013, I am probably on Hydrocortisone tablets for life, the maintenance dose will give me the Cortisol I need to carry on 'normal' life. I have also started on Testosterone gel sachets which means that the only other hormone I was deficient in is now back on track. So then, body recovery-check! hormones-check! Is there a hormone for willpower? Only it seems that everything is in place now for me to start getting a bit more exercise done to get back that muscle tone I lost during my June bout of illness. I have no more excuses now, so I'd better start putting some effort in. (but seriously, is there a willpower hormone? It would come in handy!)
So, no more excuses, I need to put some effort in!
Also, I went to a really useful "how to stab yourself in the leg with a sharp needle" [education] session the other day. I hope and pray that the times in my life when I actually need to do this will be VERY few and far between. But nonetheless in an emergency if I have a bad accident or can't keep my hydrocortisone down, I may need to inject myself with an emergency dose of steroids. So the Endocrine nurse specialist Sarah showed me and another patient how to assemble the needle and draw up a dose of steroids and jab the needle into a fake thigh. The thing I didn't let on is that I can barely even stand looking at needles and have taken a wide berth around the few needles that are already in the house. But the time came to "man up" and I think I did an ok job at that?! Having thought about it over the last couple of days, I am of the belief that I would be able to inject myself if I had to, I don't think the medical profession would give me the tools if they didn't think it was reasonably safe to do so - or at least more preferable to give me the tools than risk me not having the injection in time. Picked up a few other useful tips too, so it was time well spent.
A year ago or so (example)
"Well, I'm over 50 now, so I'm not as fit as I was...probably no point in fighting the age this is how it will be from now on" (although of course my pituitary tumour was probably not helping me, but I didn't know about it at the time)
February 2013
"I've got a low Adreno/Cortisol levels, so my body isn't going to be up to heavy exercise. Probably best to wait until this is all sorted."
May 2013
"I've just had a big operation, it will be a while before I am back up to 100% fitness"
June 2013
"I've had another visit to hospital, it will be a while before I am back up to 100% fitness"
July - September 2013
"I'm feeling a lot better, but my hormones still need some sorting out....so there's no point in pushing my body too soon"
Now it is October 2013, I am probably on Hydrocortisone tablets for life, the maintenance dose will give me the Cortisol I need to carry on 'normal' life. I have also started on Testosterone gel sachets which means that the only other hormone I was deficient in is now back on track. So then, body recovery-check! hormones-check! Is there a hormone for willpower? Only it seems that everything is in place now for me to start getting a bit more exercise done to get back that muscle tone I lost during my June bout of illness. I have no more excuses now, so I'd better start putting some effort in. (but seriously, is there a willpower hormone? It would come in handy!)
So, no more excuses, I need to put some effort in!
Also, I went to a really useful "how to stab yourself in the leg with a sharp needle" [education] session the other day. I hope and pray that the times in my life when I actually need to do this will be VERY few and far between. But nonetheless in an emergency if I have a bad accident or can't keep my hydrocortisone down, I may need to inject myself with an emergency dose of steroids. So the Endocrine nurse specialist Sarah showed me and another patient how to assemble the needle and draw up a dose of steroids and jab the needle into a fake thigh. The thing I didn't let on is that I can barely even stand looking at needles and have taken a wide berth around the few needles that are already in the house. But the time came to "man up" and I think I did an ok job at that?! Having thought about it over the last couple of days, I am of the belief that I would be able to inject myself if I had to, I don't think the medical profession would give me the tools if they didn't think it was reasonably safe to do so - or at least more preferable to give me the tools than risk me not having the injection in time. Picked up a few other useful tips too, so it was time well spent.
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