Well I did it! I made it to my fifty third birthday and so my new goal is to see my fifty fourth.
Sadly lightening didn't strike twice and I didn't get a repeat of the call I got last birthday to hot foot it to Papworth. To be fair it was a long shot but where's there's life there's hope as they say. I'm now caught in a bit of a dilemma. I'm desperately hoping to have the transplant before Christmas, however my lovely Australian cousin is coming over at the beginning of December and I'm desperate to see her again too. The only good thing about all this is the decision is completely out of my hands.
It was an interesting birthday for a lots of reasons and most of them not good. I've been angry, sad and stressed. So I've written off my actual birthday and have decided to make today my happy day.
It all started on Monday night when someone posted that they had got 'the call' from Papworth. Naturally there was a flurry of excitement and then we all settled down for an anxious wait for news. Although I was delighted at the news, especially as they had been waiting for so long, I was very sad for me because I knew it would be unlikely I would get the call that night as it is unheard off for two transplant to happen at the same time.
The following morning this person was back on Facebook posting as though nothing had happened. They did not answer texts or messages and the question arose as to whether 'the call' had actually been made. It was decided that someone had told a big fat porky pie and having spoken to a couple of people who know this person in the flesh it's not the first time this has happened.
Now I'm not against the odd practical joke and I'm aware that sometimes things can be posted in the heat of the moment that causes someone else great upset. Good Heavens, I've done it often enough myself. However there are some things you just cannot mess about with and transplant is one of them. No wonder there was such a bad reaction. A lot of very ill people had a restless and anxious night because of that post, some waiting for 'the call' themselves. The person concern claims a further post was made saying it was a 'no go' but no one I've contacted saw such a post.
I was so disgusted I couldn't wait to get home to delete this person from my contacts. Now I may be being a bit unfair as I don't know this person at all well. We've never met and have not really built up any relationship online, we just got talking due to our both having PH, and some people have even cast doubt on them having that. Having said all that I have found some of their posts more than a bit strange and contradictory so deciding I could do without someone like that in my life we are friends no more.
At work I decided enough was enough and gritted my teeth and dealt with a problem that I really wasn't willing to put up with anymore. That problem is now someone else's and I can't expressed how relieved I feel finally, after two years, getting it all off my chest.
Also at work I've made the first tentative steps towards early retirement due to ill health.
Now the original plan was to hang on in there until my transplant and then return for at least a year while I retrained. However with my health now failing a little more rapidly realistically I'm not going to be able to do my job for much longer. Couple that with all the uncertainty of whether we will still have jobs this time next year and I think the time has arrived a little quicker than expected.
This last year I've had to use oxygen to enable me to walk from my car to the office, which really isn't very far. Inside the building I'm having to use it more and more to get from my office to the canteen. If I can I try to make it without as I don't like to feel different in a place I go to in order to feel normal, if that makes sense. However even with the oxygen I'm beginning to struggle and when I don't use it I really feel it. My biggest fear is ending back in the wheelchair. I hated the fact that one of my colleagues had to collect me and take me to and from my car. I know they didn't mind at all but it made me feel awkward. Then it was just a temporary thing while I waited for my Flolan to be started. This time it is likely to be permanent, at least until transplant, and I just don't want that.
I'm giving myself until Christmas to consider all my options, I'm working over Christmas, and don't want anyone to have their time off spoiled by being directed because I've thrown in the towel, so I will do my shifts until then. That will give me time to think and discuss things with my family and friends and work out my finances. Come the New Year, with a clear head and hopefully a resolution to my problem and an idea of how safe my job is, I should be able to make the right decision for me. This of course is all provided I haven't had my call by then.
So maybe not the birthday I would have wished for but it has made me face a few very unpleasant things and do something about them. However as my mother always says the nastier the medicine the better it will help you. I just hope she's right.
Strictly Watch
I know this is early but I just wanted to say, what the hell happened there?
I'm afraid the wrong two were in the dance off this week and poor Rachel knew her goose was cooked when she found herself up against Abbey. Though to be fair I did think Rachel's days were numbered. I don't vote for these things but if I did I'd be wondering whether it was a fix by now. Hairy Dave and Mark are wonderful characters, they are fabulous to watch BUT at this stage of the competition the are expected to dance. I dread to think what will happen next week.
Well time to relax in front of the TV. We are having a Chinese take way for lunch so no cooking for me today. As they say, things can only get better.
Sadly lightening didn't strike twice and I didn't get a repeat of the call I got last birthday to hot foot it to Papworth. To be fair it was a long shot but where's there's life there's hope as they say. I'm now caught in a bit of a dilemma. I'm desperately hoping to have the transplant before Christmas, however my lovely Australian cousin is coming over at the beginning of December and I'm desperate to see her again too. The only good thing about all this is the decision is completely out of my hands.
It all started on Monday night when someone posted that they had got 'the call' from Papworth. Naturally there was a flurry of excitement and then we all settled down for an anxious wait for news. Although I was delighted at the news, especially as they had been waiting for so long, I was very sad for me because I knew it would be unlikely I would get the call that night as it is unheard off for two transplant to happen at the same time.
The following morning this person was back on Facebook posting as though nothing had happened. They did not answer texts or messages and the question arose as to whether 'the call' had actually been made. It was decided that someone had told a big fat porky pie and having spoken to a couple of people who know this person in the flesh it's not the first time this has happened.
Now I'm not against the odd practical joke and I'm aware that sometimes things can be posted in the heat of the moment that causes someone else great upset. Good Heavens, I've done it often enough myself. However there are some things you just cannot mess about with and transplant is one of them. No wonder there was such a bad reaction. A lot of very ill people had a restless and anxious night because of that post, some waiting for 'the call' themselves. The person concern claims a further post was made saying it was a 'no go' but no one I've contacted saw such a post.
I was so disgusted I couldn't wait to get home to delete this person from my contacts. Now I may be being a bit unfair as I don't know this person at all well. We've never met and have not really built up any relationship online, we just got talking due to our both having PH, and some people have even cast doubt on them having that. Having said all that I have found some of their posts more than a bit strange and contradictory so deciding I could do without someone like that in my life we are friends no more.
 |
| Yes I am an idiot and yes I do buy Hazel nuts just for him and his pals. |
At work I decided enough was enough and gritted my teeth and dealt with a problem that I really wasn't willing to put up with anymore. That problem is now someone else's and I can't expressed how relieved I feel finally, after two years, getting it all off my chest.
Also at work I've made the first tentative steps towards early retirement due to ill health.
Now the original plan was to hang on in there until my transplant and then return for at least a year while I retrained. However with my health now failing a little more rapidly realistically I'm not going to be able to do my job for much longer. Couple that with all the uncertainty of whether we will still have jobs this time next year and I think the time has arrived a little quicker than expected.
This last year I've had to use oxygen to enable me to walk from my car to the office, which really isn't very far. Inside the building I'm having to use it more and more to get from my office to the canteen. If I can I try to make it without as I don't like to feel different in a place I go to in order to feel normal, if that makes sense. However even with the oxygen I'm beginning to struggle and when I don't use it I really feel it. My biggest fear is ending back in the wheelchair. I hated the fact that one of my colleagues had to collect me and take me to and from my car. I know they didn't mind at all but it made me feel awkward. Then it was just a temporary thing while I waited for my Flolan to be started. This time it is likely to be permanent, at least until transplant, and I just don't want that.
I'm giving myself until Christmas to consider all my options, I'm working over Christmas, and don't want anyone to have their time off spoiled by being directed because I've thrown in the towel, so I will do my shifts until then. That will give me time to think and discuss things with my family and friends and work out my finances. Come the New Year, with a clear head and hopefully a resolution to my problem and an idea of how safe my job is, I should be able to make the right decision for me. This of course is all provided I haven't had my call by then.
So maybe not the birthday I would have wished for but it has made me face a few very unpleasant things and do something about them. However as my mother always says the nastier the medicine the better it will help you. I just hope she's right.
Strictly Watch
I know this is early but I just wanted to say, what the hell happened there?
I'm afraid the wrong two were in the dance off this week and poor Rachel knew her goose was cooked when she found herself up against Abbey. Though to be fair I did think Rachel's days were numbered. I don't vote for these things but if I did I'd be wondering whether it was a fix by now. Hairy Dave and Mark are wonderful characters, they are fabulous to watch BUT at this stage of the competition the are expected to dance. I dread to think what will happen next week.
Well time to relax in front of the TV. We are having a Chinese take way for lunch so no cooking for me today. As they say, things can only get better.
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