An era comes to an end at 5:30 pm when my notice period runs out and I am no longer employed by one of the only companies that I'd ever really wanted to work for. To say that the last 10 months have been challenging would be an understatement. I got the job of my dreams and hadn't been there 5 minutes when the bladder cancer struck. After all the treatment and getting myself built up for some really big challenges, the New Year brought disappointment as projects fell by the wayside and then redundancy.
Tomorrow I can start a new page in my business life. I've so many options and I haven't decided what I really want to do as of the moment. One thing that is important are the results of the operation. They will determine the course of treatment and how long that will last. If BCG then that could be another 6 weeks worth - not nice but it tends to mean two days off for 6 weeks. I might get maintenance which is just the three weeks and again two days off. It is pretty harsh and you can't take it lightly like I have tended to. So realistically I can write off two days a week for 6 weeks which means that I probably wont start a job until mid June at the earliest and I'll be looking to go on Holiday in July!
It seems that I can never get the timing right. I wouldn't want to lumber a new employer with only partial ability to work unless I suppose it was part time. Nothing is ever easy.
Tuesday, April 17, 2007
OK - Off Betas and now for the next phase
Blood test (Oh how I love those). That will be Thursday morning as I am out tonight and need to fast which would hardly be possible as I am on the razzle. I am off the beta blockers for now. They were used to just assist the anxiety. That done I can come off those and again we can see what the readings show.
I might then be able to have a talk with my GP on Friday and see where we go from here. It looks like increasing the Ace Inhibitors to a specific level and then regular monitoring of my BP etc. That I am doing already and so if I continue that, start to get my fitness back etc., let the new diet and health regime kick back in again after being interrupted by the operation then we can get all this lot under control.
I'm sort of converted about having these tablets now. Having monitored my blood pressure for some time, to see the figures tumble to normal and the lower end of normal is proof that I probably needed to go on them. To then find all my family were on them - well there you go.
Like all these things really, I'm getting to that age where heart and soul really do need looking after. I still don't want to be a professional patient mind you but taking all reasonable advice and leading a healthier lifestyle (hard as that is) should in the end help present problems and I hope avoid others in the future.
I might then be able to have a talk with my GP on Friday and see where we go from here. It looks like increasing the Ace Inhibitors to a specific level and then regular monitoring of my BP etc. That I am doing already and so if I continue that, start to get my fitness back etc., let the new diet and health regime kick back in again after being interrupted by the operation then we can get all this lot under control.
I'm sort of converted about having these tablets now. Having monitored my blood pressure for some time, to see the figures tumble to normal and the lower end of normal is proof that I probably needed to go on them. To then find all my family were on them - well there you go.
Like all these things really, I'm getting to that age where heart and soul really do need looking after. I still don't want to be a professional patient mind you but taking all reasonable advice and leading a healthier lifestyle (hard as that is) should in the end help present problems and I hope avoid others in the future.
Off to the GPs
This will be fun - NOT. I have now been to this GPs surgery loads of times in 9 months. Yet for 18 years I had only been there to register and to have a medical for an insurance policy.
I really don't want to be turning into a full or part time patient. Like the Hospital, whenever I go there. The whole place is full of sick people!
I really don't want to be turning into a full or part time patient. Like the Hospital, whenever I go there. The whole place is full of sick people!
Personal Gain
I've been wrestling with this for a while. suddenly, none of this matters to me anymore. I've been "climbing the greasy pole" for a number of years and some time ago, working for a major corporate, I decided to get out of it and go and run my own business. I no longer needed to play the internal politics nor do anything else just to further my career although I did enjoy it, it held no massive hold over me, I enjoyed and got paid well (or I thought so then) what I was good at and, as I was good at my job, it didn't matter if I was a bit "Maverick" or just a little difficult for the bosses to handle. That was, after all, part of my charm and made me different to my peers. See, even in this there was my climb the pole differentiators.
Since then I have run my own business and have had to impress myself rather than my bosses. Last year I took permanent work and that again meant playing that sort of corporate game but, frankly, there wasn't that much heavy stuff going down so it wasn't necessary. Playing politics in a 128,000 people business as opposed to about 50 people business really wasn't going to be that challenging when the CEO employed you.
Recently in my social life, I've noticed that politics have entered that too and I'm not too happy about it but I do find it almost blindingly obvious who is doing what, who is maneuvering who etc. It may be my take on things but you never shake this sort of stuff off/ In social clubs, people do things (always the same people) and they get bad mouthed by the people who don't do anything and if you do something you are sucking up to the chairman and all of this. Then there are the little squabbles and someone leaves as they've had enough.
I have to say that after my recent experiences, it really doesn't matter a fig about all of this. My Mum still says the words that her mum used to say
"You're a long time dead" and it really is true. Surely you can get on and sort these things out? It took a serious illness for me to see that half the things I wasted my time on before were hardly worth worrying about. If I worried about whether or not I was going to get this or that promotion or what was going to happen to me in ten years time? Well it isn't worth it is it - you could be dead tomorrow and that, is the change I need to start bringing about in myself. As I have said before, the issue then happens to be that if you want those around you to think and act like that too and they don't get it. It isn't life or death to them and they haven't had the benefit of the concentration of mind you have had through your life changing illness. Also this take s you back to the fact that only you have these thoughts and this urge to make the remaining time worthwhile! Gee life can be complicated sometimes :-)
Since then I have run my own business and have had to impress myself rather than my bosses. Last year I took permanent work and that again meant playing that sort of corporate game but, frankly, there wasn't that much heavy stuff going down so it wasn't necessary. Playing politics in a 128,000 people business as opposed to about 50 people business really wasn't going to be that challenging when the CEO employed you.
Recently in my social life, I've noticed that politics have entered that too and I'm not too happy about it but I do find it almost blindingly obvious who is doing what, who is maneuvering who etc. It may be my take on things but you never shake this sort of stuff off/ In social clubs, people do things (always the same people) and they get bad mouthed by the people who don't do anything and if you do something you are sucking up to the chairman and all of this. Then there are the little squabbles and someone leaves as they've had enough.
I have to say that after my recent experiences, it really doesn't matter a fig about all of this. My Mum still says the words that her mum used to say
"You're a long time dead" and it really is true. Surely you can get on and sort these things out? It took a serious illness for me to see that half the things I wasted my time on before were hardly worth worrying about. If I worried about whether or not I was going to get this or that promotion or what was going to happen to me in ten years time? Well it isn't worth it is it - you could be dead tomorrow and that, is the change I need to start bringing about in myself. As I have said before, the issue then happens to be that if you want those around you to think and act like that too and they don't get it. It isn't life or death to them and they haven't had the benefit of the concentration of mind you have had through your life changing illness. Also this take s you back to the fact that only you have these thoughts and this urge to make the remaining time worthwhile! Gee life can be complicated sometimes :-)
Monday, April 16, 2007
I know just how you are feeling
Sorry NO you do not know just how I am feeling as I think that only I could ever know that. I've not had much of this but I have heard it said and it is used as a part of every day conversation but it isn't right.
What I say and what I feel are two totally different things. What I tell you and what I really feel are also quite different. If I told you that when my friend arrived tonight and that I was just moments from slinging my arms around him and having a bit of a blub - what do you think I was feeling then? Relief? Grateful thanks that he has always been such a support? Relieved I wasn't going to die? You don't know - how could you - even I was a bit taken aback at the emotions I felt. As it happened we just greeted each other quite normally but I was probably far more "extrovert" than I have been for months.
It just made me realise that people can "Imagine how you are feeling" perhaps they can "Understand how you are feeling" but I very much doubt that they "Know how you are feeling" lets face it you would have to have had the same operations, tests and results, be in the same situation family wise, job wise and be similar in every way to me to really understand that.
Pedant? Certainly, I find some phrases used in everyday conversation irritating to say the least. I do try very hard not to use the phrase of the day, typical phrases in dealing with major illness (well I wouldn't would I) and things like "Personally Speaking" or "My own opinion" or that sort of stuff.
Nuff said for tonight I think.
What I say and what I feel are two totally different things. What I tell you and what I really feel are also quite different. If I told you that when my friend arrived tonight and that I was just moments from slinging my arms around him and having a bit of a blub - what do you think I was feeling then? Relief? Grateful thanks that he has always been such a support? Relieved I wasn't going to die? You don't know - how could you - even I was a bit taken aback at the emotions I felt. As it happened we just greeted each other quite normally but I was probably far more "extrovert" than I have been for months.
It just made me realise that people can "Imagine how you are feeling" perhaps they can "Understand how you are feeling" but I very much doubt that they "Know how you are feeling" lets face it you would have to have had the same operations, tests and results, be in the same situation family wise, job wise and be similar in every way to me to really understand that.
Pedant? Certainly, I find some phrases used in everyday conversation irritating to say the least. I do try very hard not to use the phrase of the day, typical phrases in dealing with major illness (well I wouldn't would I) and things like "Personally Speaking" or "My own opinion" or that sort of stuff.
Nuff said for tonight I think.
Still a little stinger
Mmmm, this isn't so nice. It is quite uncomfortable going to the toilet at the moment (passing urine). I'm guessing that it is just the bruising coming out and the blood earlier on today probably didn't help matters much either.
I've tried to be a little less active and not to do stupid things like lift heavy weights and all that. Unfortunately, I forget occasionally.
I'm now realising that I am slightly anxious about tomorrows meeting with the GP as my BP is a little higher than I expected it to be. I can't imagine that we are talking massive changes straight away as the outcome of last week's procedure hasn't truly been explained in detail.
I think I will also be making the point about being a professional patient as well.
I need to get out there and recover my life - I've spent 9 months or more fighting and I think I deserve a few days off for good behaviour :-)
I've tried to be a little less active and not to do stupid things like lift heavy weights and all that. Unfortunately, I forget occasionally.
I'm now realising that I am slightly anxious about tomorrows meeting with the GP as my BP is a little higher than I expected it to be. I can't imagine that we are talking massive changes straight away as the outcome of last week's procedure hasn't truly been explained in detail.
I think I will also be making the point about being a professional patient as well.
I need to get out there and recover my life - I've spent 9 months or more fighting and I think I deserve a few days off for good behaviour :-)
Little Stinger
I've spent the afternoon lying down in a darkened room and had a few hours snooze. Seems to have stopped the bleeding now. The trouble as you can imagine is that the bladder is a muscle and so it is possible that this was a scab coming off one of the biopsy points or where they hooked out the suspicious bit.
Anyway, I'm keeping an eye on things and making sure that I don't do anything stupid like lift anything heavy and other such pursuits. It really is so easily done.
Little Stinger? Yes, if you have blood in your urine it gives you just a little sting to let you know. Just like cystitis (if you have ever had that?). It is enough to make you take in a short little breath and sort of half double up but it isn't that bad.
I'm out tonight and then off to the Doctor in the morning - I'm going to find out about this blood pressure thing a bit more then. I've been checking my BP these past 4 days or so with my new machine and it appears to be reasonable levels to me. I suppose it will be whether or not to continue the beta blockers or not.
I've not touched my exercise bike for a week and a bit as I had injured my back and then had the hospital and as you can imagine, exercise may just start off the bleeding again. What I think would have been apparent if I had continued would have been more weight loss (I've only lost kilo) and I think I'd have also continued to improve my BP results too through more cardio exercise.
More on that after we meet tomorrow.
Anyway, I'm keeping an eye on things and making sure that I don't do anything stupid like lift anything heavy and other such pursuits. It really is so easily done.
Little Stinger? Yes, if you have blood in your urine it gives you just a little sting to let you know. Just like cystitis (if you have ever had that?). It is enough to make you take in a short little breath and sort of half double up but it isn't that bad.
I'm out tonight and then off to the Doctor in the morning - I'm going to find out about this blood pressure thing a bit more then. I've been checking my BP these past 4 days or so with my new machine and it appears to be reasonable levels to me. I suppose it will be whether or not to continue the beta blockers or not.
I've not touched my exercise bike for a week and a bit as I had injured my back and then had the hospital and as you can imagine, exercise may just start off the bleeding again. What I think would have been apparent if I had continued would have been more weight loss (I've only lost kilo) and I think I'd have also continued to improve my BP results too through more cardio exercise.
More on that after we meet tomorrow.
Retired Hurt
I had forgotten just how knackered this recuperation period makes you.
I can only see a whopping great bruise on my right hand (you have to believe it) and that oblong of missing hair on my leg which as the hair is growing back is itching like hell. And of course there is the rather delicate matter of the um well, delicate matter so to speak which is still a little sore to say the least. You don't see anything else that makes you stop and think. There are no scars, stitches, plaster casts, splints (although that would be interesting) and the like to remind you that you've just been sliced about a bit.
I hope that I haven't gone back to the GPs too early by having an appointment in the morning. But my beta blockers run out tomorrow and if I am to stand any chance in the next Olympics - I need to be taking those!
I am feeling quite light headed and a little weak this afternoon and so I will be packing away the office stuff and going and sitting in the front room. I've got some cerebral work to do and I'll do that and relax.
Let this be a lesson to you - or me more likely!
I can only see a whopping great bruise on my right hand (you have to believe it) and that oblong of missing hair on my leg which as the hair is growing back is itching like hell. And of course there is the rather delicate matter of the um well, delicate matter so to speak which is still a little sore to say the least. You don't see anything else that makes you stop and think. There are no scars, stitches, plaster casts, splints (although that would be interesting) and the like to remind you that you've just been sliced about a bit.
I hope that I haven't gone back to the GPs too early by having an appointment in the morning. But my beta blockers run out tomorrow and if I am to stand any chance in the next Olympics - I need to be taking those!
I am feeling quite light headed and a little weak this afternoon and so I will be packing away the office stuff and going and sitting in the front room. I've got some cerebral work to do and I'll do that and relax.
Let this be a lesson to you - or me more likely!
Bugger - bleeding again
Serves me right for trying to run before I can walk again won't it? Just went to the loo and thought - Mmm that looks like blood and it was.
You get a little warning like this occasionally and it just says to you "SLOW DOWN DUMMY!"
So in that case I shall - slow down that is.
If you have this yourself - just remember that when they said rest up for a week or don't drive for a week - they probably meant it. Me? I've driven the car around yesterday (long distance) and today on two or three short runs. Now I am paying for it. Doh!
You get a little warning like this occasionally and it just says to you "SLOW DOWN DUMMY!"
So in that case I shall - slow down that is.
If you have this yourself - just remember that when they said rest up for a week or don't drive for a week - they probably meant it. Me? I've driven the car around yesterday (long distance) and today on two or three short runs. Now I am paying for it. Doh!
Previous post looked a bit worse than it was
I was trying, unsuccessfully to say that life goes on and that in the overall scheme of things its a small thing no matter how big it is to me.
Maybe it is only me then
That is elated about the current situation. It was as if everyone else was just floating around me this weekend. I felt that some people were really pleased (as was I) and yet nothing changed. It was as if it had never happened.
It only happened to me of course. Maybe it only ever mattered to me?
I asked my wife whether the children knew. She said - "yes they did". Nothing was said, nothing was different, nothing had changed. Just me - I changed this weekend, I moved on and I now realise that no one else will change with me as no one else has the disease, lives with it, fights it and moves on from it other than me.
It only happened to me of course. Maybe it only ever mattered to me?
I asked my wife whether the children knew. She said - "yes they did". Nothing was said, nothing was different, nothing had changed. Just me - I changed this weekend, I moved on and I now realise that no one else will change with me as no one else has the disease, lives with it, fights it and moves on from it other than me.
Sunday, April 15, 2007
Cheshire Cat Job
I have been smiling like a Cheshire Cat for sure all day and it was a fantastic day - i had a great time - I'm never sure if everyone else does though. I managed to drive all the way there which was good and was able to do the raffle and to spend time sorting things out.
Home gone 6:30 so much longer day than we are used to. But again, I'm not sure if everyone else wanted to be home so late.
But do I care?
Home gone 6:30 so much longer day than we are used to. But again, I'm not sure if everyone else wanted to be home so late.
But do I care?
Lovely Day
I'm not greatly impressed that I'll have to be wearing a suit today though - it is really shorts and tee shirt weather. We are off for a meal in the heart of Kent today.
The roads are bound to be packed as people make their way out for the day. At least it will give the A/C some exercise.
The roads are bound to be packed as people make their way out for the day. At least it will give the A/C some exercise.
Saturday, April 14, 2007
Sinking in
Slowly and surely I am beginning to take in the news and I'm still not sure. I actually feel quite drained this evening. I've spent a few hours just sitting outside in the garden in the dark and thinking things through and sitting quietly.
I finally came to the conclusion that I need to get on with some of the stuff I've been thinking about and some of the plans I've been cooking up whilst I have been undergoing treatment. I'm not certain that everything will come off though.
As I've been away from everyone, I've allowed myself a few tears tonight - not too many - just enough to relieve the system . Tomorrow I have to meet lots of people and I'm not absolutely sure how I am going to handle things. Some know others don't. It is all becoming more powerful emotionally than I thought it would and it is building slowly. I still don't see the leaping down the road Hollywood finale materialising but perhaps a quieter personal and private version -maybe?
Too much thinking going on for a Saturday night - obviously.
[Goodness - for the first time on the whole blog I've spelt "beginning" properly - I don't know what that means but it is a milestone of sorts]
I finally came to the conclusion that I need to get on with some of the stuff I've been thinking about and some of the plans I've been cooking up whilst I have been undergoing treatment. I'm not certain that everything will come off though.
As I've been away from everyone, I've allowed myself a few tears tonight - not too many - just enough to relieve the system . Tomorrow I have to meet lots of people and I'm not absolutely sure how I am going to handle things. Some know others don't. It is all becoming more powerful emotionally than I thought it would and it is building slowly. I still don't see the leaping down the road Hollywood finale materialising but perhaps a quieter personal and private version -maybe?
Too much thinking going on for a Saturday night - obviously.
[Goodness - for the first time on the whole blog I've spelt "beginning" properly - I don't know what that means but it is a milestone of sorts]
Absolutely Knackered
I decided that I should wash the car as we are going out tomorrow. I'm absolutely knackered and thought at one time I was going to need to sit down for a while.
Many who know me would not be surprised at this shirking of hard work :-) but really, - I can only guess that the anaesthetic is still working its way out of my body as I wouldn't normally be this tired after washing a car. I was thinking of perhaps getting back to my exercises again but I think I might wait a few days.
An appointment has been made with the GP to go and "negotiate" over my blood pressure on Tuesday. Perhaps I'll discuss the whole package with him then.
Many who know me would not be surprised at this shirking of hard work :-) but really, - I can only guess that the anaesthetic is still working its way out of my body as I wouldn't normally be this tired after washing a car. I was thinking of perhaps getting back to my exercises again but I think I might wait a few days.
An appointment has been made with the GP to go and "negotiate" over my blood pressure on Tuesday. Perhaps I'll discuss the whole package with him then.
The fear of becoming/being a professional patient
It sits in the back of my head that I'm concerned about being one of these "Professional Patients" - you know, the ones who have been there and done that got the Tee Shirt, DVD, Book (signed by the author) and can quote medical terminology, drug types, side effects, dosage levels and the latest research at you. They can then tell you in intimate detail the procedures, the cocks ups and the revisits that they have had.
I also don't want to end up down the GPs every few weeks getting checked out and pushed and poked and having "routine" blood tests and all that either. Having managed to avoid the inside of a GPs surgery for all but a very few times in 30 years I don't want to know what pattern the wallpaper is nor to be discussing with fellow patients when they will get around to fixing that piece of peeling paper in the corner.
Reading back on the blog last night (or early this morning) I was more and more concerned that I am spending time being a patient and concentrating on getting well, staying well and understanding it and managing it that life is very one sided. I expect that it probably has to be still for a short while. I've survived the past 9 months or so of this and now I've got to put this to one side and in a way park it and move on. If the dangers are receding then I can perhaps take a backwards step in these next few weeks and review this, park it perhaps, and then move on in a different direction.
A bit of a digression there but that's it really isn't it, time to move on and put this behind me, take a deep breath and move on.
I also don't want to end up down the GPs every few weeks getting checked out and pushed and poked and having "routine" blood tests and all that either. Having managed to avoid the inside of a GPs surgery for all but a very few times in 30 years I don't want to know what pattern the wallpaper is nor to be discussing with fellow patients when they will get around to fixing that piece of peeling paper in the corner.
Reading back on the blog last night (or early this morning) I was more and more concerned that I am spending time being a patient and concentrating on getting well, staying well and understanding it and managing it that life is very one sided. I expect that it probably has to be still for a short while. I've survived the past 9 months or so of this and now I've got to put this to one side and in a way park it and move on. If the dangers are receding then I can perhaps take a backwards step in these next few weeks and review this, park it perhaps, and then move on in a different direction.
A bit of a digression there but that's it really isn't it, time to move on and put this behind me, take a deep breath and move on.
Retrospective
Someone told me the other day that I had had a terrible time of it with horrible things happening to me. I suppose that is true. It is less than ten months since it all started. If you'd have told me a year ago I would have gone through this much I would have doubted your sanity.
Just listing the procedures is enough. The first signs and the weeks of terror at the abnormality and knowing "surely" that it was fatal! That truly awful local anaesthetic scope, the shock of the diagnosis even though I thought it was that all along, the operation and recovery period first time, weak as a kitten, still frightened, and then (Oh my God) that awful IVU X-Ray thingy when I truly wasn't ready for it. The next follow up operation and its unexpected outcome, recovering from that. The relief of the results but the subsequent realisation that whilst it looked better - things were more dangerous. The 6 weeks of Immunotherapy before Christmas. Getting better and fitter and getting ready for a New Year and then to be made redundant. The disappointment of the operation being set back and all the blood pressure problems and then the last operation. Putting it that way - how can I not say that I agree with them.
I ought to add here that on top of this you can add the stress, panic, strain, terror and pain. Then stretching your relationships with family and friends to breaking point, losing your get up and go (mine got up and went) and not really wanting to do anything or commit to anything either.
Let's add to that the problem of finding a new job that is going to be flexible enough to accommodate the next course of treatment. Let's face it, an interview now would mean that I may not really be able to put a full week in for 2 or more months.
I can add to this that there are other pressures that aren't immediately apparent. How about trying to plan a holiday - no one got a real holiday last year. The ability to commit to dates, other than weekends in case treatment clashes or overruns. Whether or not your insurance actually covers and whether the Consultant and GP will get the right forms back. I mean it has only been 6 months they have been trying to sort this out. Who knows whether the damn thing will ever pay out. If things had have been worse then you can imagine that the family wouldn't have got anything which sort of defeats the object of taking it out in the first place.
Loss of concentration, lack of any ability to plan, loss of enthusiasm for anything really, stuff screwing up your thoughts and a brain that just wont do what I tell it too (perhaps my brain has turned female??). Not getting much sleep and processing lots of options and what if scenarios - you know what if this happens, how will I do this, If I cant find a job how long can we last, will I be around for my Kids graduation / weddings and all that sort of guilt stuff. Oh yes and if only I hadn't have done so and so in 1970 something.
I am sure I could add to this list a couple more pages of negatives.
What about the positives?
Better life style than ever
Heightened sense of the ridiculous
The experience (I doubt I am a better person - just changed)
Major changes coming
Fitter
I can't think of many others at the moment. I am amazed at the recuperative powers of the human body. I saw people smashed up worse than I was and they recovered as did I. I really felt beaten up the first two times and either I'm getting used to it or resilient or I'm just plain too stupid to feel knocked out! I am amazed how you can deal with a situation in many different ways and the processes you have to go through to achieve your goals. The demons you have to slay for yourself and the way you do that. I'm more surprised that I have the ability to be patient with people who are utterly stupid or just plain bloody ignorant. Whilst I like to show a hostile and belligerent attitude - I do try and be measured even when people are being downright stupid.
Of course I'd never ever wanted to be in the position, but I am. What can I observe looking back? Not a lot, I did some important things to aid my recovery and stuck to them. I took it upon myself to find out all I could - disturbing as that was. I know what the options are and I have the ability to discuss those with my consultant and her team. I trust my team and I do everything that I can to support what they are doing. I may not like what is happening to me but I will not stand in their way, I may whinge about it but I do get on and have the treatment.
I took it on myself to change the way I lived so that it would support the work that was being done. Being fit enough to be treated and fit enough to recover are MY side of the deal.
Writing it down is beneficial for me and (I am told) for others. Sometimes I don't like reading things that I wrote but I will leave the comments there for people to see.
I am so glad I didn't get anything more serious, more invasive or more deadly.
I still haven't realised how close I came or still could come with this. A few layers of cells - that is all, a few layers of cells.
We won't do was it luck or something else tonight - or as it is in the early hours of the morning. I'm afraid that hasn't stopped happening. I have the worst sleep patterns these days.
Just listing the procedures is enough. The first signs and the weeks of terror at the abnormality and knowing "surely" that it was fatal! That truly awful local anaesthetic scope, the shock of the diagnosis even though I thought it was that all along, the operation and recovery period first time, weak as a kitten, still frightened, and then (Oh my God) that awful IVU X-Ray thingy when I truly wasn't ready for it. The next follow up operation and its unexpected outcome, recovering from that. The relief of the results but the subsequent realisation that whilst it looked better - things were more dangerous. The 6 weeks of Immunotherapy before Christmas. Getting better and fitter and getting ready for a New Year and then to be made redundant. The disappointment of the operation being set back and all the blood pressure problems and then the last operation. Putting it that way - how can I not say that I agree with them.
I ought to add here that on top of this you can add the stress, panic, strain, terror and pain. Then stretching your relationships with family and friends to breaking point, losing your get up and go (mine got up and went) and not really wanting to do anything or commit to anything either.
Let's add to that the problem of finding a new job that is going to be flexible enough to accommodate the next course of treatment. Let's face it, an interview now would mean that I may not really be able to put a full week in for 2 or more months.
I can add to this that there are other pressures that aren't immediately apparent. How about trying to plan a holiday - no one got a real holiday last year. The ability to commit to dates, other than weekends in case treatment clashes or overruns. Whether or not your insurance actually covers and whether the Consultant and GP will get the right forms back. I mean it has only been 6 months they have been trying to sort this out. Who knows whether the damn thing will ever pay out. If things had have been worse then you can imagine that the family wouldn't have got anything which sort of defeats the object of taking it out in the first place.
Loss of concentration, lack of any ability to plan, loss of enthusiasm for anything really, stuff screwing up your thoughts and a brain that just wont do what I tell it too (perhaps my brain has turned female??). Not getting much sleep and processing lots of options and what if scenarios - you know what if this happens, how will I do this, If I cant find a job how long can we last, will I be around for my Kids graduation / weddings and all that sort of guilt stuff. Oh yes and if only I hadn't have done so and so in 1970 something.
I am sure I could add to this list a couple more pages of negatives.
What about the positives?
Better life style than ever
Heightened sense of the ridiculous
The experience (I doubt I am a better person - just changed)
Major changes coming
Fitter
I can't think of many others at the moment. I am amazed at the recuperative powers of the human body. I saw people smashed up worse than I was and they recovered as did I. I really felt beaten up the first two times and either I'm getting used to it or resilient or I'm just plain too stupid to feel knocked out! I am amazed how you can deal with a situation in many different ways and the processes you have to go through to achieve your goals. The demons you have to slay for yourself and the way you do that. I'm more surprised that I have the ability to be patient with people who are utterly stupid or just plain bloody ignorant. Whilst I like to show a hostile and belligerent attitude - I do try and be measured even when people are being downright stupid.
Of course I'd never ever wanted to be in the position, but I am. What can I observe looking back? Not a lot, I did some important things to aid my recovery and stuck to them. I took it upon myself to find out all I could - disturbing as that was. I know what the options are and I have the ability to discuss those with my consultant and her team. I trust my team and I do everything that I can to support what they are doing. I may not like what is happening to me but I will not stand in their way, I may whinge about it but I do get on and have the treatment.
I took it on myself to change the way I lived so that it would support the work that was being done. Being fit enough to be treated and fit enough to recover are MY side of the deal.
Writing it down is beneficial for me and (I am told) for others. Sometimes I don't like reading things that I wrote but I will leave the comments there for people to see.
I am so glad I didn't get anything more serious, more invasive or more deadly.
I still haven't realised how close I came or still could come with this. A few layers of cells - that is all, a few layers of cells.
We won't do was it luck or something else tonight - or as it is in the early hours of the morning. I'm afraid that hasn't stopped happening. I have the worst sleep patterns these days.
Friday, April 13, 2007
A very strange old day
It has been a strange day and I'm going to retire hurt in a moment :-)
So many people are happy for me and I'm sort of quietly happy for myself and my family. We are the only people not shouting about it. Strange isn't it. Almost a surreal experience - I wonder when it can have even been so arse about face?
So many people are happy for me and I'm sort of quietly happy for myself and my family. We are the only people not shouting about it. Strange isn't it. Almost a surreal experience - I wonder when it can have even been so arse about face?
Why am I not celebrating
I just spoke to my friend who is cancer free and therefore cured. Same with him, no reaction apart from thank goodness, that's good, nice, great etc.
We were working out whether that is because it isn't a binary thing. It doesn't just happen. That the stress and trauma of the past which is all bottled up and generally hidden is suddenly released and that is suppressing your elation.
Perhaps because you are geared up to hear the absolute worst case scenario and then get almost the opposite news - it is just so hard to take it in. Who knows - the shrinks would have a field day and I'm sure I could find my Kubler Ross area - if so then I am probably "testing" at the moment.
It is weird as I am gradually and quite cautiously letting people know and yet although I am happier today than I was yesterday I'm not ecstatic nor am I anywhere like where I thought I'd be.
Have I become over cautious, more pessimistic or perhaps something else has changed in me. I mean after this news I'm meant to pack it all in, buy a yacht and sail around the world or something like that and I don't feel like that either. I suppose we will have to see how it pans out over time. Sorry not to be leaping up and down and whooping and yelling. :-)
We were working out whether that is because it isn't a binary thing. It doesn't just happen. That the stress and trauma of the past which is all bottled up and generally hidden is suddenly released and that is suppressing your elation.
Perhaps because you are geared up to hear the absolute worst case scenario and then get almost the opposite news - it is just so hard to take it in. Who knows - the shrinks would have a field day and I'm sure I could find my Kubler Ross area - if so then I am probably "testing" at the moment.
It is weird as I am gradually and quite cautiously letting people know and yet although I am happier today than I was yesterday I'm not ecstatic nor am I anywhere like where I thought I'd be.
Have I become over cautious, more pessimistic or perhaps something else has changed in me. I mean after this news I'm meant to pack it all in, buy a yacht and sail around the world or something like that and I don't feel like that either. I suppose we will have to see how it pans out over time. Sorry not to be leaping up and down and whooping and yelling. :-)
My New Toy has arrived
A proper blood pressure monitor with an arm cuff and averaging on it etc. First readings are good and show that my little wrist monitor wasn't as bad as we first thought.
I've now started a chart and will do morning and night as I need to go and see the GP next week for the next steps in getting this sorted. I've a feeling that Tuesday will be a fun day.
I've now started a chart and will do morning and night as I need to go and see the GP next week for the next steps in getting this sorted. I've a feeling that Tuesday will be a fun day.
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