Tuesday, March 31, 2009
It will be one year since I started at the charity and I am secured for at least 9 months and perhaps a year to carry on in my position. So much depends now on getting a proper clear in June or July and then we can discuss a permanent position.
The house is, as I suspected, in a bit of disarray but the work to the ceilings looks to be progressing well and a few more days should see it completed. It sure is strange looking up at the floor boards of the first floor from the Kitchen.
My next concern has got to be seeing the Doctor on Friday and getting my blood pressure done and then at some time sorting out a blood test. I really should get on and do that if I can but it is time and opportunity leading up to Easter everyone wants a piece of me. I will see if I can get away with the Blood Pressure only on Friday so I can get my tablets. If not then it will have to wait for a week or so to get time to do it. I'm feeling bloody minded at the moment about all these things as they never can give you a suitable appointment to allow you to sort things out in a morning or an afternoon and so if I have to work around them that is what I will tell them. I'm getting to the point of hardly even wanting to discuss the usefulness of trying to get everything sorted in one go. This time, if they can't sort it out, they can wait for me.
So what else? Aprils Fools day tomorrow - will be fun I have something planned to go company wide first thing. hopefully it should be fun.
Other than that, 1 year under my belt and it seems to be a successful and enjoyable time. I've had 2 operations and 9 treatments (I think) in that time and it does make a difference to me to be clear of having the treatment even though I'll have to get operated on in June or July. The people are nice but now the work is easily achievable and under control I find sometime I struggle to find enough to do in one day. As luck would have it there is a major initiative coming my way for the summer which I am just planning now.
It hardly seems a year that I have been there. A lot has gone on and a lot of things have changed and now, recently, for the better. A good attitude towards my future is helping a lot.
Monday, March 30, 2009
Going out and visiting other Lodges and doing presentation work for the charity are good and I enjoy standing up and hitting people with emotional stories and the way we look after the wreckage of young children's lives. I can engage with an audience and I have empathy with many of the cases and so it works really well. I get to meet interesting people but the downside is they fill me full of beer, wine and good food :-)
Things I used to do just don't seem to excite me anymore. Maybe they became superfluous when I got ill and I just looked at them as having little or no meaning. I'm actually sure that having interests does help but for some reason I have lost interest. It is just another of those strange things that seems to happen.
We are all going out this Saturday for a meal and I have no doubt we will enjoy ourselves because, frankly, I'm not going to die, I don't look haggard and sunken eyed like I did 2 years back, the drawn look to my face has gone and I'm just a happier and fun person to be around these days. I think that people intuitively know when you are ill and you put a brave face on things but cannot disguise the fact that you are ill. So they probably didn't enjoy themselves much being out with a Zombie?
Well watch out everyone as I'm coming out to party on Saturday and it is A's 19th Birthday so time for a good celebration.
I haven't really done any cooking for the last getting on for three years. I do the occasional but I haven't actually spent time making Pasta or cooking a nice meal for everyone. I feel that perhaps I can get back to doing that again. I used to enjoy it but a number of things I just didn't do as "I couldn't be bothered". I don't think it was being lazy exactly although it could be construed as that - I just didn't want to, it didn't interest me and I got little satisfaction from it.
A number of things I've noticed that I don't "enjoy" doing much these days:
Driving - even though I have a nice car to drive in
Cooking - I used to really enjoy that
DIY - no cannot even bring myself to do that
Going for a Walk - OK once I am pushed to do it and enjoy it then but not much in past few years
Going Out (Theatre, Meal etc) - Just couldn't be bothered
It's pretty much a list of most things you'd do :-) At least I am beginning to get back into these now. I'm going to blame being ill and I'm also conscious that I must have been ill for some time beforehand as a lot of things were no longer enjoyable before the symptoms showed up. It was if there was a general malaise - perhaps that was a warning sign?
Anyway, little by little enjoyment is creeping back onto the Agenda and as I get more strength back I intend to stop living like a Hermit and get on with life again.
Sunday, March 29, 2009
A few things need to change including my weight and further adjustments and refinements in my diet and exercise regimes.
It is one of those crazy things that I am trying to get time off to go get these tests done and cannot find time to do them. They need them for my medicines and I need them to get my prescription. It is a funny old world but I will get it done this week. I cannot believe it has been a year since I last had it done. It is also a year since I started this job and a year since the Tribunal. A lot has happened in the lost year.
I have managed to get myself in advance on most things. The trouble this week is that Ii need to agree my new contract - yes I have been there a year now. I need to try and get days off sorted, I need to get to see the GP and get a right rollicking for being overweight. After that I need to go and get my blood taken so they can make sure they aren't killing me. On top of that, this place is going to look like a tip whilst they replace the ceilings and it is A's 19th Birthday this week. I can hardly believe that she is that old.
I'm really struggling to keep on top of all my paperwork here but today has been useful to get a great swathe of things done. I didn't get around to the accounts but they need my undivided attention and one day needs to be taken to make sure I get that right.
I'm back at my desk and wondering whether to creep downstairs and get a coffee or just stay here cracking on with all the paperwork I have to catch up on. I must actually do a number of these things today or I'll miss the deadlines for them. I have also just seen that I am meant to have the accounts finalised and audited by the 16th April. As someone once said - "You've got two hopes on that, No Hope and Bob Hope!"
I can blame my computer crash I reckon...
Saturday, March 28, 2009
I can honestly say that I thoroughly enjoyed my day out. I had a little sleep (as you do) in my chair when I got home and am now off to bed as we lose an hour tonight of course and also that I want to be up early for the F1 as it looks to be really interesting in terms of who has the upper hand in the manufacturers and drivers championships. Time will tell, I hope they just get on with the racing and leave the politics back at home. Fans want races decided on the track not in a court of law.
I think I may have lost a bit of weight this week as my suit fitted better today than it did last Saturday - it isn't a lot but encouraging that despite the meal on Thursday evening I still appear to be getting the intake of food down and the type of food has changed as well.
I have ramped up my fruit intake and I just need to get back into the right sorts of habits.
I talked to a friend who had the same cold as I did and he has had to have an MRI scan for his tinnitus he suffered. That is a bit of a concern but he and I compared notes and it is almost identical to the problems I had.
I was also invited out to loads of meetings and so I need to spend the rest of tomorrow sorting out those invites and loading dates into the diary for next year. One of them is VERY special indeed as it is the 175th Anniversary of Grand Stewards Lodge which will be marvellous to attend. I am beginning to feel much better about myself and it is great to be getting out more and spending time at these meetings. It cheers me up no end.
The House is in a bit of uproar as the builders are coming to repair the ceiling upstairs where Mrs. F put her foot through it :-) and the Kitchen which I repaired when we first moved in (water damage) and has been temporary for 20 years now :-)
I am grateful to be out of the house whilst most of that happens!
Friday, March 27, 2009
Certainly practice looks interesting and the cars actually look to be capable of having a race not a procession this year.
I am out tomorrow to Gillingham in Kent and I will take public transport there and back. The nice thing about that is that I can have a few beers and some wine and the train and bus can bring me back home! It is actually marginally faster by public transport anyway.
I hope to get some time sorting out other things this weekend that I have missed. As usual tiredness is taking its toll. I am beginning to lose some weight and I intend to keep that happening this year and if I can lose a lot by the early summer. Crash dieting isn't good but a controlled slow loss and exercise seems to be doing the trick. The biggest problem still remains the number of meetings I am attending and the meals and booze that go with each.
I'm sure that I will be able to settle on a happy medium.
Thursday, March 26, 2009
I went off this evening to the Bosses Lodge meeting. It was very nice and I got to do a lot of work even as a visitor. A good meal but silly journey home. Had the weepy, crying stupid girlie on the train who decided to light up a cigarette, which I'm guessing fell into whatever she was drinking o then it sounded like she was sick and then she started crying. I moved carriages but she decided to try and move herself but couldn't find the door button for a while. All the time I was dreading her getting near. Luckily the train made it into the station as she managed to work the door. The smell of cheap perfume, vomit and stale cigarettes really did nothing for her, her makeup had run and she could barely stand. Oh to be young again :-)
I'm still tired as you like. More so as I got woken a number of times and had just a few hours. I intend to try and get some more tonight.
I have run out of time to take holiday. I hope that I can negotiate that in the next week or so.
The end of March is rapidly approaching and I haven't done a load of things I should.. The weekend may be catch up time. At least F1 starts again and the clocks go forward losing us an hour!!!
Wednesday, March 25, 2009
I'll have a full on day tomorrow followed by an evening out with half the chaps in the office at their Lodge meeting. All good fun.
As for tiredness and fatigue it just goes with the territory - it is one of those things that I imagine you eventually get over or come to exist with.
Tuesday, March 24, 2009
Had a bit of a shock with the ear bleeding though as I was sat on the toilet and used some tissue paper to staunch the flow of blood and dropped that down the pan. When I got up I could see blood in the toilet and I very nearly shocked myself stupid until I realised what it must have been. Since then I have been taking particular notice of when I go to the toilet in case there IS blood there. SHUDDER!!! Nothing on this earth can ever prepare you for how gross that actually is - almost unreal experience and not one I recommend to anyone...
Half way through the week tomorrow. I must plan out my contract and other stuff tomorrow and all my commitments. I could do with time off really but that isn't going to happen this week.
Monday, March 23, 2009
I still have tinnitus which is very off putting as the high pitched screaming was giving me some trouble today at a meeting. Fitness - average, attitude - not bad - work is good, feeling - well a little sick if the truth be known, I had a nice enough meal this evening and went for a beer after our Lodge of Instruction and I feel a little queasy - I even left some of my beer which is unusual to say the least. Not sure if the beer was the reason or the catalyst.
So sat here feeling a little less than my normal humorous and upbeat self, trying not to cough or hiccup in case I actually am sick - it is close :-(
So, fighting back the feeling that I may be having a conversation with the porcelain voice pipe or indeed subjecting myself to a technicolour yawn, I shall continue on here for a while.
It was an interesting chat this evening that a friend pointed out there was a local job, paying as much as I get now, looking after a school's PC infrastructure and getting to work 42 weeks a year. He said hands off as he was having first shot at it - but even so - it did sound interesting. the trouble with any of the jobs is that you'd be expected to work specific hours and I haven't done that until recently since 1991 or before really. Since then I have been able to do pretty much what I wanted as long as - and here is the rub - the work got done, on time and on budget, the customer was happy and we made a profit. Simple really, keep all the balls up in the air and the reward was very much all about time - having the time to go and do what you wanted, when you wanted, as long as you played fair.
So many people don't get it even today. Most offices lie empty more than they are occupied. If you work 40 hours a week, it leaves the offices unoccupied for 16 hours a day Monday to Friday and 48 Hours at the weekend! One day people will get their heads around the problem but still in this day and age, for more than 2/3rds of the time, no one actually works in the offices that are kept heated or conditioned.
I have absolutely no idea what that has to do with bladder cancer and so forgive me for rambling on once again.
The "celebrity" or person of notoriety I mentioned in my blog earlier has died and there is a lot of "press" being made about it. I doubt that anyone outside of the UK has ever heard of her and yet some are playing it up like Diana died again. This lady was no Saint and craved publicity and lived in its glare. Being a person of notoriety doesn't make you anymore than what you were. They say she has increased awareness of Cervical Cancer and young women are coming forward to get screened. That is a good legacy but building up for beatification maybe a bit premature dear members of the press!!
By all means build on the good stuff but remember that reality stars are - well - reality stars.
Sunday, March 22, 2009
I often wonder if it is me but then realise that it isn't! Things just happen here and will continue to do so I suppose. I don't thrive on serendipity, surprise and unplanned events. At least though I'll get a few beers down the neck and some wine with the meal! There needs to be a flip side.
Feeling good about myself and getting a daily boost in confidence and self esteem. Still need to work out how to lose this weight. I couldn't believe I got back last night after a three course meal and got an attack of the munchies and had a cheese sandwich at about 11! OOOopppss. Now that is guaranteed to stick pounds on me. Mind you, now that it is getting warmer I should start to eat less. I can drop a few stone over the Summer. I feel rabbit food (sorry salad) taking over my life again! If I start digging holes in the earth I've had too much.
Saturday, March 21, 2009
We then went to the meeting and had a great time. they do things very differently in Sussex and it was just so pleasant to sit down and enjoy the afternoon and the meal in the evening. i had to sing for my supper a bit though as I did the response to the visitor's toast but that was fine and enjoyable as it had been a good meeting and so it actually sounded like I had enjoyed it.
It would have been nice to be there without the car and to have spent a little time seeing the sites and spending some time in the local pubs. I am quite pleased with that and I was home before 10:15 so pretty good timing too.
The house is in darkeness and all quiet so I'd better not disturb anyone.
It is amazing how reliant we are on it these days. I am off to Sussex and so I am checking a satellite photo of the place and seeing where I can park, working out the time it will take me and checking out a joke or two as I have to reply to the Toast to the visitors this evening.
Friday, March 20, 2009
We did enjoy ourselves and that is the main thing. not sure if Mrs. F did but the office humour sort of spilled out into the evening and you either rode with that or missed out.
I don't think we have been for an evening out to friend's for 2 or 3 years at least.... I enjoyed it, I hope we get back into the habit of getting friends around again.
Thank goodness I am out on my own tomorrow down in Sussex.
Thursday, March 19, 2009
It is a bit like the bogey man or sandman or whatever you may call him. It may have been a regular visitor or frightened you enough as a kid and eventually that goes away. Occasionally, very occasionally, there'll be some sort of fear that will remind you of that time. The main thing is that the visits get longer and longer in between and eventually disappear altogether. Well imagine Cancer being there every time. What will probably happen is that the fear and worry will slowly over time go away - you just can't rush it and perhaps only those of us with cancer can actually understand the dread fear of it coming back.
I go to the toilet - I look for signs of blood. I almost hesitate - just in case
I get an ache or feel the area around my bladder or lower stomach give a slight pain - that's cancer back I think?
I look at anything I have and wonder - is that cancer?
The area on the back of my hand aches where they normally stick the cannula - it reminds me of the number of operations I've had in the past 32 months and reminds me of the next ones to come
My Doc wants blood tests (again) and I am reminded that I am not as fit as I was before all of this.
I'm rebuilding my life again and it takes time and patience and I'm rescuing relationships and not always succeeding. Lord alone knows what has happened to my brain as I forgot that someone asked me for a lift last night (I can't remember them asking) and I still suffer tiredness and listlessness.
It doesn't sound at all positive does it? And yet it is in every way positive but when people ask why you aren't really celebrating and enjoying things as you would expect to, the niggles and worries really are there. I'm sure they are in every person who ever survived a brush with the Big C. My friends who both had Prostate Cancer and had that removed both young guys - they get clears all the time but even they are worried after all this time. The longer you remain clear the better it is. The fear is that you've had it once and it didn't get you so it is plotting to come and get you when you aren't expecting it. The bogey man is coming after me 40 years after I banished him from my bedroom and my dreams.
I am pleased to say that the Black Dog hasn't been seen for a long time which is great. I'm sure that he and his depression laden, twist your mind stuff is off bothering some other poor soul suffering from their Cancer and keeping them awake at night and taunting them with the dark glimpses of death and malevolent thoughts to disturb their nights and cause them waking dreams of depression and hurt. I'm glad he is gone, he was worse than any of my current worries and thoughts.
Time will tell though - I ended up with next to nothing to do tonight as I am awaiting a series of photos and comments on things.
Again I am tired and feel sleepy on the train home. I think it is getting a bit better but the heat of the train and the rocking motion certainly help to send me off :-)
I am considering my options and have pulled together a draft memo to outline my concerns at going permanent too soon with the staging and treatment so far of my Bladder Cancer. One recurrence and I could be back at stage one again or on to the next steps. All of which will cost the charity too much in terms of lost production and I for one wouldn't want that to happen to them no matter how much of a safe haven it would be for me. No I'd rather that they think it through and we look to mitigate and I suppose minimise the risks by letting another biopsy set be taken and getting the outcome of that.
I'm feeling happy with myself, tired of course, comfortable with work and less stressed than I have been of late. I have a lot of stuff to do and that is really my next challenge - to get that done in the next few weeks.
Wednesday, March 18, 2009
I'd rather go by saying goodnight to my friends and just not being there next day. Remember me for what I was - I'd hate to become a burden or to leave a sad memory for anyone. Sometimes it is better that it just happens, everyone is shocked and then they get over it and move on.
I was not allowed to see my Grandfather in his last days - I was probably just turning 17 I think and I did go and see him when I was in London and not working. I was steered away from his last days. I loved him dearly and I could see the pain in his eyes when I went to see him and he couldn't talk or I didn't understand what he was trying to say to me.
I don't blame my parents for that at all - I remember him as a lovely, funny and mischievous Grandfather and that is fine. I can only NOW begin to understand the pain of that decision on him to no longer see his grandchildren but - what a courageous thing to do, it is some sacrifice, as you don't want other people to see you in that sort of pain. Having seen it since, it doesn't help seeing someone you like, love or admire at death's door and moving up a seat each moment in God's waiting room.
So I feel for my friend. His father is an inspiration to him and this is just terrible as at the same time we were talking about my good news and it just brought it home to me. He was really pleased about my news and I was saddened by his. Life has some cruel twists sometimes.
It is a busy old meeting and so I am taking the bus there and will call afterwards to get a lift home. I drove there once and it was pretty grim to get parked and to get away afterwards. This way I can continue to have a beer afterwards and then phone to arrange a lift.
I am looking forward to this one as it is the dinner one - they do a lunch time one in October and I don't often go to that so this is a useful time to meet up with some other people and catch up on the gossip and see what everyone is up to.
At least I'll be out of the house and with some good friends.
I can't say that any discussion happens here in the house. Whether that was protection for the children or just we only spoke about the treatment and the practicals I don't know. Certainly, unless anyone actually reads this blog, there isn't a lot of discussion going on.
People at work know that something has happened, a few are in the know, many recognise that there is something wrong with me, they guess it is serious, but we don't talk about it.
The Journey so far has been an interesting one in as much as some things that have happened have been revelations, some things have been unexpected, some have been disappointing but above all, the strangest thing has been that I've changed and no one but no one has reacted to that at all. I'm not the person I was going into this. I'm not at all like I was before, I feel that I am a lot friendlier and more approachable, less likely to deal with fools any better for sure but still, significant changes to the way I used to be and everyone has gotten on and accepted all of that. Its those nearest to me that I don't connect with anymore though and that is disappointing but perhaps they notice it even more than before? Perhaps I am just too different now, too demanding, too lively, talk in a different way and am not the person they knew any longer?
It reminds me of the couple who married and the wife set about changing her Husband, making sure he dressed properly, got on at work, joined the Golf Club and Rotary etc. After 5 years she complained that"he wasn't the man she married!"
I'm sure as hell not the person I was 32 months ago.
You can work when you like and that means you work when you are most likely to perform well. You don't have 3 hours worth of travelling each day to add to the day. You don't sit in cattle trucks for the journey and a list of other things that make the typical day to day work experience less than just "getting out of the house".
At least today it was good to get up an hour and a half later and still be sat at my PC before I'd really get started at work. Unfortunately the Third Sector is way behind in terms of flexible working and they don't get working from home at all. When I was in the IT business it was a necessary step to keep costs down and to some extent, as we tended to work at or on customer sites, it meant they could retain smaller offices that we hot desked in and out of. I could structure my day around my customer and myself and get a full day's work completed by 2 or 3 in the afternoon if I got into the office first thing, got what I needed done, went to the customer site etc. It meant that things got done, everyone was happy and I didn't get caught up in the commute in and out of London every day.
So it is quite nice being sat here at the PC and gradually working my way through the things I need to get done at my own pace.
I suppose a day off and I now value my time more than I did when I just sat here working away. Seeing the sun out I'm tempted to think that I'd like a local job that allows me to be in or out as I want. Dream on I suppose :-)
Tuesday, March 17, 2009
In a way I'd like to get rid of a heap of them so I can just spend a bit of time without any pressures or things to distract me. I can spend hours sitting at my desk and no exercising or going out and I'd rather be considering my health and exercising.
Had a bit of a shock today as they want to push on with my contract and I'm a bit reticent - I'd rather stay on a contract basis than go permanent. If this other thing I am working on breaks then there will be a few problems anyway and I'd rather have a breakable contract than anything else.
Something else that I need to consider then... Perhaps part time - I just haven't thought about that either!!!
Oh well a day off then out in the evening and then changing desks at work on Thursday morning. That should be fun - I have no idea if it will work as I'm a bit lively and will be moving next to some other sparky characters too. Oh well we shall have to wait and see.
Monday, March 16, 2009
I was reading some interesting notes today about cancer that it is included as part of the Disability Discrimination Act!! Whoa - that needs more investigation. Not for where I am as they are so keen to get me into being a permanent employee it is untrue but more over the legal aspects which interest me in terms of cancer being labelled as a disability and it appears that the side effects and long term recovery is also viewed that way too. I imagine that there is the ability to pay disability allowance to some people and I wonder how many realise that is the case. Whether or not it is applicable to me, it does show that there is something being done about it and something is in place to cover it.
In terms of work - well that is also now manageable too. I just get on and do my work and crash my way through it. I need to have some time off this week as there are lots of silly little things I need to do and if I don't work my way through them - I will probably forget.
I could really do with losing a load of these things I have been doing for years. I am tiring of running them and someone else can probably run them better than I can and can take some care and attention of them too.
Other than that - Monday isn't so bad I suppose - at least work was OK and the journey was OK both ways so I can't complain.
Sunday, March 15, 2009
I think that I need a few days off this week to get myself organised. Loads of things to do and I just need to sit down and do them. Not least of which are my accounts and also to sort out my diary as I am out non stop now and need to sort that out too.
This tiredness builds up day on day and luckily I do have the weekends to catch up at weekends.
Even amongst Hospitals in the same county here in the UK the regime for dealing with BC is different. The postcode lottery (zip code) can also affect you treatment.
Your attitude, your outlook, your ability to take treatments and your fitness, your age and sex will all determine your own experience.
Some things are constants - TURBTs, BCGs and so on but the thing I am driving at is that things happen to you and you deal with them in your own particular way. My experience of being somewhat nonplussed by the results isn't exactly typical for example.
The thing I never expected was to have so many changes to my personality and to me generally caused, I am almost certain, through the journey so far.
I've noticed that I am really "lively" these days, I kept my table amused with loads of jokes last night and for an introvert you'd have been surprised I think. My wit is sharper than it ever was but my ability to chose certain words that I want to use lets me down all the time. Added to that not being able to remember a speech that I have done a number of times and it brought it home to me that there have been significant changes in terms of my memory and also how I see the world. It no longer matters what happens - nothing trivial can ever be serious again. That is the more amazing part of the journey, you get to see your eventual destiny and get taken right towards that place. You hang there for a while and then ever so gradually you withdraw from it.
That insight helps you to reconsider and reevaluate your world. As someone who has always been in the business of "control" the whole thing has been more traumatic as you have no control over things. What I do like is the ability to look at things in terms that make me compare things against "whether anyone will die". Is it that important, is it life threatening, is it really that important. Most of the answers are no and so what is great is that ability to rationalise things and boil them down to the basics.
I miss having a good memory but I enjoy the fast wit and lighter me. Gradually it is dawning on me that things are getting better. I'm not looking forward to having more tests etc but they are needed and I feel that taking away the immunotherapy treatments have lightened that disappointment.
The lesson learnt is that I can't do what I used to do just a few years ago - learn a 5 or 6 page speech and deliver it without reading it - from memory - with only minimal or no prompting.
I now realise how bad my brain is in terms of this and it reinforces what I thought I knew..
Anyway, it was also a lovely day because the Lodge gave some money to L so she can go on her field trip to Argentina and do her voluntary work and trekking etc. This is great news as it takes her over the £4,000 barrier and she now only needs a few hundred pounds to complete her fund-raising. I think, for a 15 year old, she has worked really hard to get the money together. She has raised it all and done all sorts of activities to get the money. She isn't allowed to work officially so she has had to rely on boot sales, bag packing, sponsored events etc. Good for her. She is going to get a lovely surprise in the morning.
She has the most wonderful opportunity of a life-time to go to Argentina and help establish a school there and undertake trekking, exploring, climbing and other activities. They say she will come back a changed girl. I certainly hope she makes the most of it and - I think - having raised almost all the money herself - she will appreciate the whole thing.
I wish that I had those sorts of opportunities in my day.
Saturday, March 14, 2009
Not that I am into conspiracy theories - I reckon it was just an honest case of not fully reading the notes when they decided to stick me on Maintenance having already been on maintenance.
Oh well, out again today and I hope that it will be an enjoyable meeting and everyone has a good time. I have a lot to do again and some more words which are giving me trouble. I hope that it goes alright.
Yes - well = right - what are the chances of that happening?
I am about to retire hurt I think.
Thursday, March 12, 2009
So on to more enjoyable stuff. A friend received, at the tender age of 92, his 50 years in Masonry Certificate. He is a lovely man and so Flocky Bicep and I went to the meeting. We hadn't been invited to dine and so made our way back here, got changed and went for a Curry. We initially ventured to one I used to go to and lo and behold - it doesn't exist anymore so we came back to the Village and had a nice curry and a good long chat.
Nice - enjoyed that and got a lot off my chest. I tend to thrash out my stuff on the blog as no bugger listens to me anyway! Tonight was slightly different as it was immediately interactive. Thanks Flocky.
Wednesday, March 11, 2009
No idiot this morning to complain about or have a go at but I did get to see some random acts of stupidity. I don't know why it is but imagine you are walking towards someone and decide to take a certain line. The pavement I am talking about here is a good 15 feet wide and I am 20 or 30 paces away and make my manoeuvre towards the roadside so that we are no longer on a collision course. My opposite number is aware of this change and instead of walking in a straight line also alters course some 5 steps later bringing herself (you knew I was going to say that didn't you?) back onto collision course. Now we are feet away and neither of us knows what to do next except the stop and sidestep together a few times routine!
Add to that the person who walked in front of the traffic outside charing Cross and caused much screeching of brakes and the walk to work was at least a little amusing.
As for me - well I am tired but I am happy being tired and in the knowledge that things will continue to get better for a while.
I'm relatively happy and calm about things although I would really like to resolve work, employment or otherwise in the next few weeks.
My diary looks like a battlefield and I must get something together to send to my cousins by this weekend. I have a stack of stuff still to do and I have loads of meetings and things still to catch up on. It is nice I suppose to know that as long as the charity holds together, that I have a job there and I am pleased that I am making a difference.
Tuesday, March 10, 2009
I really enjoyed the evening and relaxed. I can get used to being better - I really can.
Diet starts - after the weekend! I daren't even think when exercise starts :-(
I'm quite content at work at the moment - had a funny one this morning, queuing at Pret two of us, two servers and a guy barges past me and orders up - the lady looked at me and I told her to serve my friend first as he was "obviously very hungry and perhaps thirsty too as anyone who wasn't would have been able to queue must be". He sort of looked and made a neanderthal noise. Then when he got served that twat paid for it with a credit card he screwed up that and also his discount card which was also out of date - where do we import these people from? The guy behind the counter was ready for any trouble. However, it was OK as he was as thick as brown stuff anyway. As he left I told him not to eat his food too fast as I'd hate for him to rush it and choke himself. This is a guy who obviously was in a terrible rush.
I nearly gave him the "doesn't your religion forbid you to eat on an empty stomach?" but he'd had enough of my tongue by then and we were all laughing - apart from him who still didn't get it. What an utter dick head. I shudder that there are ignorant people like that around. He's lucky my kid brother wasn't there he'd have found himself frog marched into the street if he'd done it to him :-)
It really doesn't cost anything to have good manners does it? I remember a chap giving up his seat for a lady on the bus and after a while he said "Pardon?" The lady said "I didn't say anything" he said "Oh sorry I thought you said thank you". She got off next stop - nice one.
Monday, March 09, 2009
Having convinced myself to go another round of maintenance and then finding it isn't necessary has left me nonplussed. Work is fine, I can cope with that but somehow I appear to have lost the ability to control m time in this past week. I am weighed down with so many things to do and I'd almost got to the point tonight of saying "what the hell" where normally I would be sorting out problems in the face of adversity I was actually asking myself - "why should I give a sh1t?" That is so unlike me. It wouldn't happen of course as I wouldn't let my friends down but I just feel very tired and very fatigued and as if I've run a marathon and I am on my last legs and totally exhausted.
Now that isn't surprising to you I guess. you can probably understand that fighting cancer for 32 months or so is going to leave you pretty knackered for sure.
Well it does because the relief is kicking in and my guard is coming down, the fences that I have built are being dismantled and all of the self preservation mechanisms are slowly disappearing and it is leaving me exposed and vulnerable and tired.
I cannot properly articulate quite how it feels other than just wanting to flop down in a chair after a long walk but not after a long run? Tired but not exhausted. Also, there are many things competing for my time and I'm not handling those well at all. I cannot work out what I am doing, what direction I want to head in and whether I'm doing the right thing.
All in all, I am one screwed up cookie right now. I honestly think that it isn't long term issues it is just coming to terms with the whole change in diagnosis. The fear is that the atypia goes and does something nasty to me. The upshot is that I don't have BCG treatments and that so far the BCG treatment has done its job.
I'm sort of free again but a bit like a caged animal, they have opened the cage door and I'm not sure if I want to leave what I've known.
Trepidation, some fear, letting my guard down, being vulnerable, being "normal" again. I reckon I could keep a shrink employed for 6 months on this lot!! :-)
I think I ought to just go off for a holiday and relax and get my head together.
Sunday, March 08, 2009
I need to sort out when I am around as my calendar is crazy at the moment - I must remember to get that sorted tomorrow and e-mailed off.
Today has been crazy but I got the accounts sorted partly - certainly got them so that the money is banked and squared away. I need to sit down and do the accounts properly - probably next week if I can. It takes a good few hours to make sure everything is accounted for and in its right place.
I'm feeling a little better every day and perking up a bit more. It has taken a while to sink in that I don't need the treatment. The niggle and worry is that it comes back. I know that isn't a positive way of thinking but it is realistic. I don't knowingly do anything to warrant bringing the Cancer back but I need to be mindful that it can return. I now have to step up my efforts to get fitter and to spend some time returning to my correct weight and if I can to fit in the exercise and fitness regimes.
I'm desperate to hand off more work to others like the Egg Hunt and other things I regularly organise as I feel I am not providing anything new or fresh - in the case of the Egg Hunt I've done that for 14 years this year - I can hardly believe it but there it is. I'm seeing a lot further than the next few months and next year all of a sudden - which is good. Shall I go full time at the charity? Maybe get back to what I used to do before I got ill? Perhaps finally go and do my family history business? Suddenly, with the good news, everything is back on the table for discussion and for negotiation.
Being free of the treatment means getting some sort of control over your life back and getting that control back certainly means that you finally feel as if you can see into the future a bit better. I can look forward at least 10 years now and I haven't really done that for a long time as I have been concentrating on getting to the next stage in the treatment and recovery.
I suppose June will be another Judgement day but by then, it would be 2 years (or more) if it is clear and that must be a huge hurdle to clear. The longer I go clear, the better the chances of seeing this off and being free of the sword of Damocles hanging over me.
Yes - writing this I do feel different and I do feel positive and whilst there is a nagging doubt at the back of my mind, I am able to look forward with some confidence once again.
They haven't seen a really full on me at this place of work - I imagine when they do see me properly recovered they'll wonder what on earth has hit them.
Step aside world, I could be back very soon :-) Blimey, I hope they are ready for it - And I hope I am ready for it too!
Had a nice note from Andy P and from Steve K and it is great that your peers pull you up occasionally or better than that support how you are feeling. It is nice to know you are not alone. So having said that I am pretty cheery and as Steve K put it - no more BCG and indeed that did bring it home. You see I have been clear for 18 months and so that isn't the issue. The BCG stopping really does mean that I can start to build myself back to being fitter without the interruption of the BCG regime which whilst it is a marvellous treatment and sorts out and gets rid of your cancer, really does knock ten bells out of you at the same time - it's bound to so strong are it's powers and therefore its side effects too sometimes.
So I am pretty cheerful. I have lots to do in the next few weeks and so will be absorbed into learning words for next Saturday - I have a friend joining my Lodge which will be great. There are meetings throughout the week. I am being asked to go to work on Friday when it is Comic Relief day - which I hate and normally stay at home for. One thing I cannot abide is being accosted multiple times on the way to work by someone dressed as a clown sticking a bucket under my nose. I want to become quite uncharitable about it even though they are doing it for the right reasons, don't force it down my throat. By the time the 20th clown has walked up to me with a bucket I am preparing myself for a short trial and life imprisonment - NO really :-)
I am also out the next three Saturdays - eeeek Mrs. F. is probably going to not be impressed with that either :-)
Anyway - if nothing else, my sense of humour is back with a vengeance. I now need to just believe things are a lot better than they were this time last week and I'll be on the right road.
Saturday, March 07, 2009
So it wasn't the Hospital at all by the looks of it. What are the chances of two letters both dated the same date arriving 3 weeks late together. You sods...
I think I can turn the flame gun off now, it does make you want to spit though doesn't it?
So I could have known weeks ago that things would be different and not have to pester the Hospital.
Oh well. Back to my paperwork then...
I was quite disappointed that this wasn't the outcome in January. I then had to come to terms with a further year's worth of maintenance and biopsies. They are bloody challenging as you probably remember and then to have that decision overturned back to where it should have been in the first place is concerning me. Just when I had convinced myself that the maintenance was necessary I now find that it isn't.
I can't imagine that they would put me at risk if they felt the Atypia needed treating then they'd go ahead. As it stands, it is Atypia, not Precancerous and so doesn't need anything I suppose.
Let's all hope that I "get it" soon and get my life back.
Friday, March 06, 2009
Work want to take me on permanently (despite the risk) and I am in a good frame of mind, I am perhaps a little more lively than before but I'm also getting better and with that lasting a little longer at work, not quite so tired and learning to relax a bit too.
Things are beginning to come back under some level of control. This news is unexpected. It is however what I thought was going to happen way back in January.
So I guess that June will be the biopsy time - maybe July but I could do with June. I really fancy a bit of a bash if things are good again and go off somewhere and relax. I think Mrs. F has other ideas, she never relaxes. I could do hot weather, pool, liquid fridge and barbecue for 2 weeks - that's it. Heaven. Mrs. F would have to see all the local sights, museums, go for long walks and all that old malarkey :-)
Maybe I could go somewhere warm and she could walk there over the two weeks?
Exercise - I didn't do any this week. Diet - I did a bit but had some meals that spoilt that. Next week is hardly better there are loads of things going on in fact for two weeks. I wonder how food critics stay slim. I am going to be off for a whole series of three and four course meals in the next few weeks.
Anyway, I can feel that I have a lighter sense of humour and so am obviously cheered up and feeling a lot better than I was earlier this week so maybe it is a gradual thing.
I tried to explain that I could still get a recurrence to the boss but he doesn't appear worried. It is the end of my first year at work at the end of March and they want me to stay - I'm pleased about that.
The longer you continue to be clear, the more likely it is that you will not get a recur. I can now join in with the people I have read about before whose fear now is a recur and going through it all again.
Thursday, March 05, 2009
What on earth has gone on here then? It has been almost a month since they wrote the letter. Has he world gone mad - or did I just miss a month.
Anyway better late than never but even so - I could have had one months less worry!
"I have had a chance to go through your notes and actually you don't require any further BCG treatment as you have now completed the full maintenance course.
We will therefore need to just carry on with regular checks on your bladder and I will see you in 6 months for bladder biopsies.
Yours sincerely etc."
I heard the news late this afternoon at work. I'm stunned. Pleased, of course, but wow - that is great news. It is just I'm not sure how to react to it. I'm neutral at the moment. I had a few flashes of the enormity of it and thumped the desk a few times at work. I think it will sink in later this evening.
Stunned is definitely the right word at the moment.
Wednesday, March 04, 2009
Nil illegitimi carborundum.
Non illegitimis carborundum.
Illegitimi nil carborundum.
Non illegitimi carborundum.
Nil bastardo carborundum.
Nolite te bastardes carborundorum.
Illegitimis non carborundum.
Illegitimus non carborundum est.
Nil illegitimo in desperandum carborundum
Nil carborundum illegitamae
It reminds me of the Monty Python "Life of Brian" sketch for Romans Go Home :-)
This however is meant to mean "don't let the bastards grind you down".
Or as I'd probably paraphrase it "Objects in mirror are closer than they appear!"
It was good to get the hell out of the house and enjoy the company of friends and to hear some very interesting Trad Jazz. The singer and Banjo player were superb, the beer was at its correct temperature cold but not enough to frost the glass. Morlands Speckled Hen is without doubt a very good reason to stay cancer free for!!!
Roll on my speaking engagement tomorrow.
I wonder whether:
- Waiting to hear what the Hospital is or isn't going to do is putting a bit of stress on me?
- The job really has got tedious
- Some people ought to be doing their own job not putting it on me and
- I'm just tired and not drinking lots of coffee etc. Mind you green tea and Earl Grey are taking a whacking. No sugar either...
Whatever it is - I am off to the Jazz night and good job too. That will bring a smile to my face. Tomorrow is likely to be a half day although I am at a speaking engagement (poor audience). They are paying for my food and wine so how sad is that? :-)
I just hope that no one else tries to be "fresh" with their answers. Since when did No actually mean Yes or even Maybe!?
It's a bad part of my character but you don't get second chances much. If you say one thing but mean the other, an INTJ won't get the subtlety of it.
Anyway - work beckons - must dash.
Tuesday, March 03, 2009
I really don't think I have vented my frustration and anger at all since I was diagnosed. Sure I was angry but not seeing red like I am now. I am calmly tapping these keys which surprises me but I suppose I need to measure what I am saying or the keyboard would become mush!
I can't even begin to tell you how angry I am. Really, really angry and yet I am sat here quite calm. I suppose seething might be a better word. Am I angry with Mrs. F? Probably not in the overall scheme of things. Myself? Possibly. Cancer? Perhaps - I don't remember being angry about it before - well not like this.
I will go downstairs and do some calming down after this. The annoying thing on top of this is that - whoops - I may just have resolved this - I haven't had any coffee at work today! Don't tell me it is that.
Tonight, not sure why, it was slinging a gale (still is) water everywhere -rain horizontal and just a filthy night. I get off the train to find that it is like trying to round Cape Horn on a Dinghy just to get through the ticket barrier. I phone Mrs. F for some sort of respite - it is after all a mile walk home and I get the "too busy with something else answer".
I hung up the phone, turned that off and threw all my toys out of the pram. I'm still not in the right frame of mind to be talked to.
Right this minute, writing this blog, I could easily go and stove something in, break some crockery or some other such thing. I haven't been this seething angry in absolutely years.
I also don't think I have actually sworn that much since I was on a building site 30 years ago either :-(
Perhaps the pressure gauge needs to be let off? Is it the Collateral damage I have feared all along? I don't know, I may have been angry but I was really holding back. Maybe I need to go on one of those anger management classes. Gee a Magnum and a target would have been a most welcome distraction to vent some spleen tonight.
Damn it I am still so angry even writing this. I need hours to calm down. It is absolutely lashing it down outside and I've already got soaked through tonight so I can't just go for a calming couple of hours walk.
It is at times like this that I tell people to leave me alone and what do they do? Yes, you've guessed it, they try and talk sensibly to me. BIG mistake. When an INTJ goes "into one" you really need to get the hell out of the way.
As I said at the beginning, for me to get beyond standard cynical bastard and into "take no prisoners venom mouth" really takes a lot of goading and a lot of poking and prodding. Today, someone just learnt their limit. As for me, I feel horrible as I don;t like being this angry, this full of adrenaline, this downright vindictive and the loss of control that anger suggests may happen.
Monday, March 02, 2009
I am getting to a point where I am cruising and I don't like that. I want a few more challenges and yet I have specifically made time slots available to allow for treatments and things and as nothing is happening I am having to bridge those deliberate gaps in my schedule.
I am wide awake now at close to midnight and I don't want to be. I need to work out how I can get to bed but more importantly get to sleep earlier.
I suppose it is all about habit breaking and adapting and I can perhaps start to change that down this week as I haven't got too much on.
I have completely avoided chocolates and sweet things, stopped taking frothy coffee and sugar and in fact drank tea today mainly Green Tea with Jasmine and used sweeteners. I ate a muffin before I went to work (English Muffin) and so didn't stop for my customary Baguette or Almond Croissant.
No sweets (Candy) at all. I just had my sandwiches and soup and that was the lot. So actually I did quite well until we went for a beer before I came back from my evening out.
I think I can reduce my intake this way and eat the right things, I also managed to pack in my 5 a day fruit and veg and so think that I should be able to at least begin to sort things out.
Still no news from the Hospital. I think if I haven't heard in a day or so, I will ring up and see what is going on.
I am feeling a bit better about myself but have to say - some people saw a side of me you don't normally see and that is one who was a little p*ssed off with a friend of mine. I don't mind having to keep bailing him out of the brown and smelly stuff regularly but then to sort of rub my nose in it tonight and ask me to do some more sorting out for him in public meant he got the rough end of my tongue. I daren't even think what my facial expression betrayed. I am genuinely a very easy going person but don't push it or your luck too far. Believe me, my limits are pretty much unreachable but this guy managed it.
Also, I suppose luckily it was all over in a few seconds and was quickly diffused.
Sunday, March 01, 2009
It is a bit concerning as I don't know what they are going to do with me. It will soon be 3 months since they operated.
It makes you wonder what is going on. Are they waiting for the 3 months and then scope me? Will they wait 3 months and then restart the BCG treatment? Then there were the 2 Rigid Cystoscopies to come too, she wanted those at 6 monthly intervals. It is all a bit strange isn't it? You see I was surprised that I'd need another year of maintenance - considering I had already had a year's worth to date.
I find it unusual for them not to be communicating with me or to have had the appointments if I am having BCG.
Maybe I'll find out this week what is going on?
It was a long and tiring, albeit, enjoyable day. The shock came when I put on my waistcoat and found that it needed loosening off.!! In October that fitted and whilst I know I have put on some weight - that graphically demonstrated how much.
I'd say a good 2" around the waist and shoulders. In addition my waist band and belt also showed the same requirements on my trousers (pants).
So I need to do something about it and the next steps really are to work out how to get back to being healthy again and to fit some exercise into my week. I see Steve's blog on just that as a timely reminder for me to go and sort that out.
Work seriously gets in my way in terms of the time I can bring to the job but perhaps I just need to be creative about that as well and work out a way to fit it in.
Whatever happens I cannot ignore this and need to do something about it and fast, it also needs to last too. The trouble with many diets is that they may make you lose weight but they don't address the whole area of sensible eating, exercise and keeping the weight off and being healthy so I am on a mission to sort that out today and also to sort out what has happened to my other PC which isn't working this morning! What is that all about? If it has gone then it is all three PCs in a few months :-(