Recovery and the road to it

Well today was strange - I was sleeping in when I got a call from my Mum at the crack of Sparrows - "Have I woken you?" I lied and said I was awake already.

Thereafter getting up was somewhat amusing as I ached just about anywhere it is possible to ache. Having got up I sat down at the PCs and duly knocked out a few hours of e-mails and bits and then I had to sort out a PC problem for a friend. I felt that I should have a sit down which I did after lunch and then sat and watched some DVDs purchased for just this eventuality. Half way through Lawrence of Arabia, I had a call from my friend who sounded very upbeat - which pleased me as he sounded down in the dumps last week.

We chatted about lots of things and a lot about my recent operation and the hopeful results. We both have our problems with the Black Dog turning up every now and then but, as I reported last week, I am feeling very good about myself, my job, my condition and just about everything else at the moment. How long can that last?

Well to answer my own question, at least three weeks and I hope longer than that.

I am now really getting to grips with my job and things that I set in motion two or three months ago are coming to fruition. Some of the long term plans I made are also working out well.

I just hope that I am not like the Ensign you used to see on Star Trek - the one you hadn't seen before - sent on an away mission and stunned by aliens :-)

I am 95% certain that my consultant's words were meant to say - clear - let's go to the next stage. That will be something to hear. Not sure how I'll react to it though. Considering that the last lot was two small precancerous areas that were said to be suspicious and that this time the areas looked pink but are probably a reaction to the BCG are - I am sure - the right sort of words without being completely committal before the lab results.

This isn't the end of the road it just means there is a new fork in it and the way gets easier and a little more pleasant. Maintenance therapy is there to now "prevent" the cancer returning not to remove it. It may seem a strange slant on things but for the present, I don't have cancer. These results should re-enforce that prognosis. Maintenance would then kick in which will last many years but I'll be monitored and receive ongoing treatment which will eventually lead to being clear for a long enough period to know that it wont come back.

I now have to go and do my part of the deal and get myself back into shape. I probably wont get started until next week when I am feeling a little less sore but I must get back to a proper regime of exercise, diet and life style to maintain a healthy body and to ensure that I get fit again ready for the next lot of BCG treatment which could start as early as November (about the same time as last year!).

Anyway - I am very upbeat and I must go and get some rest. I am prone to overdoing things when I should be recuperating.

So How Was It?

Bed shortage - nothing new there but eventually after 3 hours waiting I was taken straight to surgery. That was actually quite stressful as I hadn't been able to relax and do my breathing and repeat my hypnotheapy words to myself and get myself ready. So Blood Pressure was up, Pulse was racing and I did say why I thought that it was so. After a short while it all came back to on the high side of normal.

In the preparation room I was pleasantly surprised to be able to award 10 out of 10 to the Anaesthetist. we made a deal that I'd provide a juicy vein and that they would find a sharp cannula. They were very good - I don't have a larger bruise (unlike the rest of my body which feels like one big bruise). We also had an arrangement that for my Operation (yes they call it an Operation not a procedure) I'd be whisked off to Hawaii in less than 7 seconds.

I did feel very "heady" this time when I came to and I was back on the ward and felt quite well after that.

No blood (a few bits) when urinating was a marked improvement and I was disappointed that I had to stay overnight.

A three week wait now until the results are known. That is going to be difficult as I'd like to start shouting about it now but - if it isn't in writing then it isn't confirmed. Be good if it was though wouldn't it? Brilliant

And so to bed - thanks Sam

Yes off to bed now.

Had an interesting afternoon snoozing in front of the telly and watching - or rather not - some DVDs I wanted to get around to watching which I will have to watch as I dozed off during most of them. I've been taking some Nurofen and Paracetamol and some throat tablets.

They seem to have done quite a number on me and I ache just about everywhere. My legs really hurt - perhaps they were put in stirrups and my back, neck and arms hurt but they are nothing to what my lower abdomen is feeling. That does feel like they have stirred me around a lot.

However, given the suggested good news, I think I will take the pain as it looks like there may be some gain to be had here.

Ever hopeful I am off to bed and hope that I feel a lot better in the morning. These General Anaesthetics really do take it out on you as well and I am coughing too - which is normal. The trouble is coughing hurts my already sore throat and hurts my chest.

Good to be back home though.

Oh yes - and I won an album I have been after for ages on eBay - cool.

Back Home

Shaken and Stirred.

Will post more later as I NEED sleep. All appears to have gone very well. They could see noting in there except for a pink patch or if you listen to the registrar some red spots! I'll take the Pink Patch from the Consultant at the moment.

They think that it is reaction to the BCG not anything else.

I'll know in three weeks time.

On that rather splendid news - I shall take my leave of you and totter back downstairs for a coffee and a snooze in my chair.

2 hours to go

And the countdown is well and truly on. I had a good night's sleep and got up at 6 for a light breakfast and a coffee. I packed down two large glasses of water and I am allowed to drink (although I will only sip) water up until the time I go in.

I'm surprised that I am quite as calm about this as I am. Sure, there is a little apprehension, I don't know anyone who actually enjoys the experience after all.

I managed to sleep after breakfast - had the strangest dream about the cruise we had been on (or part of it). I've woken, had a shower and I'm about to upload some MP3s to my player to take in with me. Going through my head is the Antony & the Johnsons track that was playing just before the first operation - not the brightest of tracks but one that is now connected to the whole experience.

So 15 months (well it will be tomorrow) since discovering this I'll be having my 4th General Anaesthetic and 3rd set of biopsies. So far (touches wood) each has shown an improvement in fortune and so I am quietly confident that this will continue that trend and things will get better.

I am also convinced that this will be a change in emphasis this time and that I can get back to running my life and not having it run for me. Sure there will be deadlines and milestones for this as treatments and peek & Poke sessions will be needed and followed.

I am going to get this over and done with now and I feel better than I did last week going for pre-assessment. The back of my wrist is beginning to twinge a bit as I know the Cannula is going in there but other than that and I can feel some anxiety, I'm OK - I know the drill now, I know how it works, what is expected of me and what will happen (so there is no need to worry about what they are going to do). I know to ask for my water when I wake and to take it easy so as not to pass out like the first time :-)

Curiously I can feel the slight churn in my stomach but that will pass and now it is 1 1/2 hours before I go in.

Fingers crossed that they find nothing this time. If that is so, then we can crack open the "Internet champagne" - if not - it may take some getting used to, but I'll have to re-plan accordingly.

The art of distraction

Going away for the weekend was useful and has distracted me from going in tomorrow. I plan to try and be as busy as I can be tomorrow morning before going in. I'm getting better at actually going in these days and I hope that I'll sleep tonight - never did before. I hope to do something constructive rather than playing endless games of Tetris or solitaire whilst waiting.

No doubt I'll be my quiet self tomorrow avoiding any eye contact and plugged in to my MP3 player.

I had a good weekend albeit the M25 was up to its tricks which delayed getting to the Hotel until late.

The one thing that strikes me is how tired I was when I got back, further proof of the general lack of stamina I have been complaining about.

Getting ready

To go away for the weekend with a few buddies. We did this a couple of years ago and had an interesting few evenings at a well known seaside resort. Of course, we are getting a little old to go charging around and clubbing.

However, it will be very therapeutic for me as I am with a very old friend and we will get some quality time together and chat about lots of things I'm sure.

Anyway, as usual for the UK will have to pack for sun or tropical storms so I'll be taking a rather large suitcase covering either eventuality

The Art of Catching Lobsters

If you ever get the chance to watch this film - do so. http://www.cornwallfilm.com/Article80.htm - it premiered this evening and I was gripped as soon as I started watching it. the "emotional baggage" that goes with cancer isn't all about yourself. The people around you, friends and family and more so your partner and your children go through a life changing event themselves.

You know that they are going through it but you can only watch and if you are rubbish at saying things (like I am) you don't let on you just beat yourself up that you - through your thoughtless actions of getting cancer - have upset everyone nearest and dearest to you. This IS what it feels like and you get a guilt complex about that too. Such is the grip of a nasty disease that not only are you fighting to get well you are also fighting the fact that you are making other people's lives a misery. That is how you feel - I don't think that is the reality.

I so have to choke back the tears when I see my daughter's first photography project around cancer and smoking - set in grainy black and white and half - way through the words "My Dad has Cancer" - there - I'm having trouble writing it.

The film deals with the affect a stroke followed by cancer has on the family and the aftermath of the terminal nature of the disease. It is heart wrenching stuff and, as you would expect, evokes the sort of response these films normally do until you realise that it was the wife who made this film and bares her soul for us to see the pain and solitude of the situation. Time heals all someone said. I just enjoyed the honesty of the film and as you can imagine I was hit many times over with the fears that we all with cancer feel in our hearts and minds. See it if you can.

Now - where's the Kleenex?

Sense of Humour needed

It is difficult to make a blog "sound" the way you meant it to. For example the last one was some of my sense of humour which is oblique to say the least.

:-) You can prefix or suffix stuff with a smiley I suppose :-) either that or I need to word things a little more carefully and not as they spill out of my head and onto the blog.

Anyone who knows me can understand that some of the stuff I can come out with can take a while for everyone to get and so please do read this blog with the realisation that not all of it is serious. In fact, the best thing you can have when you have any sort of ailment is to combat it with humour if you can.

Wow - Magic Day

Fantastic - massive progress in where I am heading and a big leap forward in my attitude. I am so confident and so assured and I feel really good about myself.

I'm flying at the moment and I'm in demand. I'm useful and I'm helping people and I am doing all the things that I am really good at.

Tonight - work wise - I am on top of the world.

And yet. Deep inside myself, there is that nagging feeling that there is still more collateral damage to come.

I am a Myers Briggs INTJ personality. That is very rare - perhaps 1 in 100 at best. We tend to be visionaries and what worries me is I can see two outcomes. They are binary outcomes. Armageddon or I turn out to be Bill Gate's benefactor!!! Oh go on - I'm allowed to dream.

The New Me

Well it isn't really the new me at all of course. It is the more positive me. A more aggressive outlook and a more focused use of my effort and attentions.

I am determined to claw my way back to being me and trying not to concern myself too much about the past and concentrate on the future whatever that may hold.

I've made a conscious decision to really tackle my weight and exercise regime in such a way that I can mix work and exercise and not have one cancel the other out. I am also determined to get fit and to re-commence my eating regime. For all sorts of reasons and rightly or wrongly I haven't really done anything in a routine since the BCG treatments. First it was the party then the holiday and then full on with the job and other things and all else went by the wayside.

It is easy to get out of a routine. It is far more difficult to get into one. To do the things you are comfortable with is a human trait. It is doing things because they are outside of that zone which will be setting me my challenges - John F Kennedy's We Choose to Go to the Moon speech pops into my head to do things because they are hard, because they are a challenge and because they push the boundaries. Without setting goals and then achieving them are key elements in the fight back to normality and stopping the roller coaster.

My mate K was there tonight and I have to thank him again as it was his idea that I start this blog. It is everything and more I wanted it to be and it allows me to get stuff off my chest, tell people that it is normal to have whatever is happening to you in your cancer journey and it allows me to look back and realise just how far I have come in 11 months since the blog started and 15 months since I was diagnosed.

So I've had a good day and good evening and I hope that I can just build on that over the next few weeks. I'm used to being the manager and getting my own way and having everything just so - because it isn't has thrown me quite a bit - to get back to "old" (although I don't want old for the sake of it) ways is important as it is my baseline.

Out With the Lads

Went rather well - a bit of a bizarre evening as the sat nav took me to Rochester High Street and Not Chatham High Street. Eventually got where we needed to go and went to the pub and found our mate from Canada already there.

"What beer have you got?" "Sorry we haven't got ANY beer!" "Umm OK what about Guinness then?" - I think they squeezed one out. They had no Cider and some of the lagers were off and the lights in the toilet didn't work. However, that broke the ice and there was plenty of banter going on which was fun. One of the lads had a Video that was 27 years old!! It was made at our old school and is a very early black and white video recording. It is - well - rubbish but has some priceless moments in it, especially a thunder flash that exploded taking the camera off its tripod, deafening the cast, breaking two lamps and two windows in the process. How no lasting damage was done to people we do not know to this day. So the pub sat aghast whilst the lads reminisced about the play, the video, the damage and so on. The guy from Canada and I looked on blankly as we were not in it and were sitting open mouthed at the production quality. We are deciding whether to put it on You tube - it could be the only negatively rated video I feel.

We had a great time and were almost in tears reminiscing. Some hadn't seen each other for 35 years and so it was amazing how we all jelled back together, laughed like drains about the school days and forgot our standard stories or exaggerated them or both!

What a great evening and I thoroughly enjoyed myself - I didn't drink as I gave a lift to one of the guys and it was just a good crack with a nice curry and all for £20 a piece beer and food - not bad.

YOU have control

That is what they say to pilots taking over the controls (especially learners).

The previous blog touched on something that I really hadn't considered recently but did early on. That is that you have no real control over what is happening to you after you are diagnosed. You have Yes/No choices (there aren't many maybes that I was aware of).

So consider that ride - I called it the Roller Coaster that you couldn't get off. As a cancer patient - you are in the hands of a series of people - you have no control over them saving you, your ongoing treatment as, unless you happen to be an Oncologist or Urologist, what would you know about it? The only things you can do are PMA (positive mental attitude), do what you are told and take your medicine and treatment. You can do other things as well, within your power to do, life style changes in diet and exercise and so on, you can get other bits fixed (heart in my case) and so on but these are minor things when compared with everything else.

Now, it has dawned on me that my life was entirely in the hands of other people and that is a bit scary. I had no choice but to do what they said, I took a kick in with losing my job and had the anxious wait for insurances and the like to be reviewed.

All these things are not the way you live day to day - I suppose we all know that we really aren't (if the truth be known) entirely in charge of our own lives but we like to think that we are free and can make our own choice and are in control of our lives.

Well - I haven't been for 15 months now and I think that I'm just beginning to realise that. It is time for me to take charge now. I cannot second guess the outcome of next week's tests but if it is good then life takes a new path. If bad it takes another path but whatever it does, I am aware of what I need to do, I am educated about my condition. I know what effects it has on me physically and what I need to do now is to step up to the plate (as our cousins say).

Step up to what? Well - how about leaving behind the baggage of cancer and making another path for myself? How about stop thinking too hard about it and getting on with it. Stop worrying about what a decision may lead to and go and find out? Lots of things like that perhaps - get control back over my life and live with the knowledge that I have survived a very serious illness and I may never (or I might) fully recover from that. So it isn't that bad. I still have all my limbs, I still feel good, I have my brains (some would argue that), my wit, my eyesight and so on so really there are a lot of people far worse off than me and it doesn't stop them doing things.

I'm not sure how I am going to be "this" positive about this all the time, I feel that I have to break this "victim/survivors syndrome" and get on with life. All the time I stay introverted is time missed from what is left of time here.

Grinding away

Today is one of those days were I am getting stuff done but it is a progression of small mainly boring things that need doing. Each on their own is hardly worth the effort but taken together they will get rid of this pile of junk around my desk and a backlog of things that - unlike me - I have just left on one side of the desk.

I will have to get into serious time management mode once I get out of Hospital next week. There is a part in that which no one likes particularly and that is to throw stuff out that isn't important. I used to be good at that and for some reason, recently, I am putting stuff into piles to "look at later". That pile is driving me nuts and when I look at it now - I could have binned most of it.

The worry is that these things just get left and build up and really I could be so much more efficient, like I used to be. My friend also has the same problem with getting things done - perhaps it was the weeks off work or perhaps something else, certainly the body goes out of equilibrium and perhaps that may account for it.

I need to get some control back again. Up until the illness I was in control and then I got on the Roller Coaster. It probably isn't going slow enough to jump off yet but perhaps I can start to exert some control over this whole thing - perhaps that is it?

The week ahead

It is amazing how quickly all these things creep up on you and how your emotions ebb and flow. I was a little better than I have been at these assessments but even so - the stress was obvious in the raised heart beat and high blood pressure. I'm OK now but feel a bit strange. That is most probably to do with this detachment defence mechanism that I use. This works by saying these things aren't really happening to you.

Now in the main this worked last year because everything was traumatic and pretty horrible and (please let this be so) what I am about to have - if the same as last time isn't quite so bad. Not nice (could it ever be?) but you get used to it. Anyway, I tend to go very quiet and become very inward and yet I was putting on a very brave face and laughing and joking in the assessment clinic.

I don't know - I'm OK - I am preparing myself for next week and tomorrow I'll be all bouncy and my normal self - tonight - I'm a little subdued and a little thoughtful which is no bad thing either.

With that - to bed - goodnight.

Well that's over

Phew!

It took ages this morning as the Doctor was held up in the torrential rain and I arrived soaked.

Blood pressure was high but settled down. I must tell them to take the blood test first and then I'll calm down :-) Everything OK and due in 1st October. At least this time the time is right (checked that) and I have permission to drink so keeping myself hydrated after the awful time I had before. I was suitably impressed that I had remembered to bring a urine sample with a test kit they gave me 3 months ago - I followed the instructions to the letter and you have to make it the 2nd pee of the day. So I was somewhat amused when I got there that they wanted another one. As luck would have it - the delay allowed me to brew one up for them after all :-)

I'm getting an old hand at this - unfortunately.

I am just going to dry out a bit and then dash off to the Post Office. I think I also deserve a small bag of Wine Gums or perhaps Pontefract Cakes.

Assessment looms

Yes - so it does and I'm OK with that - a tad nervous if the truth be known but I should be OK. I won't make the mistake I made last time of almost running there and then wondering why I was in a bit of a state :-)

It is at 9 a.m. so that will give me plenty of time to walk home and take the rest of the day off quietly calming down.

I actually - again - have a lot of work to do and I have procrastinated all weekend. Mind you I was out most of Saturday and got on with a fair bit today so perhaps I'm being a little bit hard on myself with that. But I do need to hit some targets as I am out Monday night, Tuesday up in town, back here, out with some old school chums - some I haven't seen for 5 or more years and then I have some more work kicking off later in the week. Phew - so much to do before 1st October! I'm away for part of the weekend as well.

Oh well - no good rattling on here about it - I ought to be asleep and be up early to get assessed!

A Year Ago

I was not too clever of course and I was a bit of a wounded soldier and was curled up for quite a while not exactly feeling great. Wasn't to drive the car for 4 weeks and all that so I missed going to my Friend's installation meeting. Well a year later and I was able to this time and I met up with a friend who I hadn't seen for some time. He had a heart attack the time before I was meant to meet him and so it was great to meet up and catch up with our "conditions", diets and medication - see I'm getting good at this stuff now. We are like a bunch of kids although I'm not sure if having a bigger dosage of a tablet actually means that your condition is more serious than the next?

On a sadder note my cousin is in hospital with heart problems and another Friend is awaiting some tests as he isn't well either. So I wish them well.

Another old friend was telling me about his recent bladder infection (and later kidney infection) and what they had to do to him - a flexible cystoscopy - when I explained what I had done to me and quite how the treatement is instilled regularly and that I'll probably be getting a couple of them a year for the rest of my life I reckoned I'd made my point..

Finally I saw that Marcel Marceau died this morning - the web site isn't reporting his last words though.

Thoughts on just another step

You can understand when people say that they no longer want to have treatment. I can see that it can get to that point. They just want to say that is enough, I've had enough and that is it.

I feel that way now in a way - but I know that actually I need to do what it takes to get well. I'm young enough and mercifully fit enough to keep doing what needs to be done. However it is the stress for me more than anything else - and I hate Hospitals. I'm quite good in that I can now rationalise about this or be philosophical but it isn't nice and it isn't how people imagine it.

When you talk to someone who has been in Hospital all the "yuk" bits are skipped over - we talk about the food the cleanliness the nurses anything but that there was some bugger shoving a lump of plastic into my hand or worse.

Oh well that is a week and a few days away if I get through pre-assessment - just to think last time I went I had to have blood tests, pills and lord alone knows what... Fingers crossed that it doesn't happen again.

Middle Aged Rage

I am still fuming over this idiots e-mail to me. I thoroughly dislike being set up , I hate someone firing rhetoric at me. Now that it is found that it has absolutely nothing to do with me - have I got an apology? Nah!

Some people in high places - as my friend said - have no stature. Perhaps he is right. Maybe I have to hold the high ground and see how I shape up against him.

Life is too short already for this nonsense.

Anyway, I am off out tomorrow and I am looking forward to that and then I can have Sunday at home and Monday in for pre-assessment - yuk!

Oh well, that is just "another step" as someone told me. Each of these things are...