Nice to know

Everyone is still asking after me. Bad news is that a friend's father has less than two weeks to live. Brain Tumour and not operable. He is beyond the point of caring and now everyone else has to endure the time that he is hanging on. Don't take that the wrong way. I would hate that my family or friends should suffer. I want my family to remember me as I am now - not some drugged up, incoherent person in a Hospital room. NOW I feel for the family more than anything. Now it becomes personal and spiteful and cruel. Life IS like that I suppose. You'd rather remember people in a certain way and it isn't always possible.


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.

Looking forward to a night out

Twice a year we get a big meeting of all the Provincial Officers in our Provincial Lodge. This afternoon and evening it will be a chance for a good 300 or so of us to meet up and have a few drinks and a meal together and catch up with old friends and all the latest news and views.

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.

Happy with my own company?

Some say that an INTJ are happy enough with their own company and that is true. I can happily go and sit in a pub, with a book or newspaper and read that, have a beer and be very happy with my lot. I work well in a team or as a team leader and all the usual stuff but occasionally I tend to find that if I haven't been able to communicate or express myself to someone else then I tend to off load when I do meet someone who is willing to listen. I try to be equal and listen to them but I've noticed that I do tend to miss not having someone to talk to about my ongoing recovery and how I am coping. My mates are good and so they tend to be the ones who "get it".

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.

Working at home

I sort of miss the freedom when I have to go and do "structured" work. Commuting, routine and same desk thinking is one of the things I got away from back in the early 1990s and I enjoyed the creative freedom that working at home gives you.

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 :-)

That day off

Is tomorrow and I have to get a crack on with loads of things that have piled up that need attention all stuff that I "volunteer" for.

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.

By now I am shattered

The previous blog forgot to say that I am out every Monday from late September to late May and don't get back until after 11 normally (unless I was having treatments) and so Monday nights can be very bad for me but - at least - I don't tend to have any insomnia on a Monday! Some upside :-)

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.

Start of the week

It always seems to be the same that the start of the week I get tired as I am coming home and gradually each day I get tired earlier on in the day progressively. It does appear to be better and in terms of the utter fatigue I was getting some months ago this is far more manageable.

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.

Fatigue ongoing

I've been tired all day today and slept in and have dropped off a couple of times this afternoon. I make a conscious decision not to sit at my computer on a Sunday but today sat downstairs with my laptop.

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.

A Personal Journey

Experiencing cancer must of necessity be a personal experience and it is governed by your circumstance in life, your family, your geography and you own make-up, personality etc.

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.

A great day out

But I completely lost my memory. I've been working for weeks to get this speech learnt and delivered and I got to the meting and promplty forgot the whole thing. Luckily, a friend was up to do it and did a great job and it took a load of pressure off of me.

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.

Strange Feeling

I have been really pleased that friends are cheering me up recently. I'm happy that things are going right but I still have a nagging feeling that the uncertainty caused through the U turn by the Consultant is worrying me.

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.

Do you know who your friends are?

I think I do and I think that their kind words and, more so their actions, have been instrumental in my fight and recovery from Cancer.

Cheers guys

Coincidence or what?

was waiting to go home after my meeting and turned to see an old friend who was (Play soundtrack to Twilight Zone) texting me at the same time. We decided to go for a beer or three. Not bad as I had been at a business meeting until then. I was about to catch the 19:45 and ended up on the 23: 00

Yes - well = right - what are the chances of that happening?

I am about to retire hurt I think.

Another nice day

I had one of those funny sorts of days. Funny in terms of the momentary lapse of reason I had when I realised that people are still thinking of me as a "Resource" when I am so much more than that. I am finding that one of my problems is that I need challenges, responsibility and recognition and those are lacking at present. Nowt phases me except being taken for granted as some sort of "secretarial" aide.

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.

Interesting Day

As I work in the Grand Lodge building it was nice to get an opportunity to go and see one of the 5 major meetings that are held - well - just up the stairs from us. So the day was busy but quite an enjoyable one. I suppose that I have a very enviable position being able to do that and it was my first Grand Lodge - it was impressive and most enjoyable as there are big changes at the top and it looks like exciting times ahead.

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.

Nostalgia

Lads night out tonight and it was good as we got an extra old boy along. There were some very funny moments indeed. A couple where I nearly spat out my beer as the punch line came at the wrong moment.

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 :-(

Strange day

It was a strange day today - I belted through my work - I was on a real charge and I am in advance on some other bits and I still had capacity - suddenly I realised that I'm back into my old thrash mode and back up to speed which has been missing for 3 or 4 months. It is good. I also seem to be getting some real progress on some of the minor projects and have a couple of new ones starting too.



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.

Wall of disappointment

I'm a funny guy. Funny peculiar that is. I just cannot believe that this may be the end of the beginning. Nor can I get my head around letting go of things and moving on a bit.

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.

Calls from NZ and coming to terms with things

My Cousins in NZ called - that was nice. They are due over here later this year and it will be good to see them - it must have been 6 years or so since they were here last. We never did get out to NZ ourselves. Certainly not the last three years with my little run in with the big C.

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!

Putting it into perspective

I had another of my long sleeps and must have done 12 hours! I feel fine but I still have residual hearing problems and continual pops and tinnitus although some days all is OK and others not so good.

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.