Lovely Day

I'm not greatly impressed that I'll have to be wearing a suit today though - it is really shorts and tee shirt weather. We are off for a meal in the heart of Kent today.

The roads are bound to be packed as people make their way out for the day. At least it will give the A/C some exercise.

Sinking in

Slowly and surely I am beginning to take in the news and I'm still not sure. I actually feel quite drained this evening. I've spent a few hours just sitting outside in the garden in the dark and thinking things through and sitting quietly.

I finally came to the conclusion that I need to get on with some of the stuff I've been thinking about and some of the plans I've been cooking up whilst I have been undergoing treatment. I'm not certain that everything will come off though.

As I've been away from everyone, I've allowed myself a few tears tonight - not too many - just enough to relieve the system . Tomorrow I have to meet lots of people and I'm not absolutely sure how I am going to handle things. Some know others don't. It is all becoming more powerful emotionally than I thought it would and it is building slowly. I still don't see the leaping down the road Hollywood finale materialising but perhaps a quieter personal and private version -maybe?

Too much thinking going on for a Saturday night - obviously.

[Goodness - for the first time on the whole blog I've spelt "beginning" properly - I don't know what that means but it is a milestone of sorts]

Absolutely Knackered

I decided that I should wash the car as we are going out tomorrow. I'm absolutely knackered and thought at one time I was going to need to sit down for a while.

Many who know me would not be surprised at this shirking of hard work :-) but really, - I can only guess that the anaesthetic is still working its way out of my body as I wouldn't normally be this tired after washing a car. I was thinking of perhaps getting back to my exercises again but I think I might wait a few days.

An appointment has been made with the GP to go and "negotiate" over my blood pressure on Tuesday. Perhaps I'll discuss the whole package with him then.

The fear of becoming/being a professional patient

It sits in the back of my head that I'm concerned about being one of these "Professional Patients" - you know, the ones who have been there and done that got the Tee Shirt, DVD, Book (signed by the author) and can quote medical terminology, drug types, side effects, dosage levels and the latest research at you. They can then tell you in intimate detail the procedures, the cocks ups and the revisits that they have had.

I also don't want to end up down the GPs every few weeks getting checked out and pushed and poked and having "routine" blood tests and all that either. Having managed to avoid the inside of a GPs surgery for all but a very few times in 30 years I don't want to know what pattern the wallpaper is nor to be discussing with fellow patients when they will get around to fixing that piece of peeling paper in the corner.

Reading back on the blog last night (or early this morning) I was more and more concerned that I am spending time being a patient and concentrating on getting well, staying well and understanding it and managing it that life is very one sided. I expect that it probably has to be still for a short while. I've survived the past 9 months or so of this and now I've got to put this to one side and in a way park it and move on. If the dangers are receding then I can perhaps take a backwards step in these next few weeks and review this, park it perhaps, and then move on in a different direction.

A bit of a digression there but that's it really isn't it, time to move on and put this behind me, take a deep breath and move on.

Retrospective

Someone told me the other day that I had had a terrible time of it with horrible things happening to me. I suppose that is true. It is less than ten months since it all started. If you'd have told me a year ago I would have gone through this much I would have doubted your sanity.

Just listing the procedures is enough. The first signs and the weeks of terror at the abnormality and knowing "surely" that it was fatal! That truly awful local anaesthetic scope, the shock of the diagnosis even though I thought it was that all along, the operation and recovery period first time, weak as a kitten, still frightened, and then (Oh my God) that awful IVU X-Ray thingy when I truly wasn't ready for it. The next follow up operation and its unexpected outcome, recovering from that. The relief of the results but the subsequent realisation that whilst it looked better - things were more dangerous. The 6 weeks of Immunotherapy before Christmas. Getting better and fitter and getting ready for a New Year and then to be made redundant. The disappointment of the operation being set back and all the blood pressure problems and then the last operation. Putting it that way - how can I not say that I agree with them.

I ought to add here that on top of this you can add the stress, panic, strain, terror and pain. Then stretching your relationships with family and friends to breaking point, losing your get up and go (mine got up and went) and not really wanting to do anything or commit to anything either.

Let's add to that the problem of finding a new job that is going to be flexible enough to accommodate the next course of treatment. Let's face it, an interview now would mean that I may not really be able to put a full week in for 2 or more months.

I can add to this that there are other pressures that aren't immediately apparent. How about trying to plan a holiday - no one got a real holiday last year. The ability to commit to dates, other than weekends in case treatment clashes or overruns. Whether or not your insurance actually covers and whether the Consultant and GP will get the right forms back. I mean it has only been 6 months they have been trying to sort this out. Who knows whether the damn thing will ever pay out. If things had have been worse then you can imagine that the family wouldn't have got anything which sort of defeats the object of taking it out in the first place.

Loss of concentration, lack of any ability to plan, loss of enthusiasm for anything really, stuff screwing up your thoughts and a brain that just wont do what I tell it too (perhaps my brain has turned female??). Not getting much sleep and processing lots of options and what if scenarios - you know what if this happens, how will I do this, If I cant find a job how long can we last, will I be around for my Kids graduation / weddings and all that sort of guilt stuff. Oh yes and if only I hadn't have done so and so in 1970 something.

I am sure I could add to this list a couple more pages of negatives.

What about the positives?

Better life style than ever
Heightened sense of the ridiculous
The experience (I doubt I am a better person - just changed)
Major changes coming
Fitter

I can't think of many others at the moment. I am amazed at the recuperative powers of the human body. I saw people smashed up worse than I was and they recovered as did I. I really felt beaten up the first two times and either I'm getting used to it or resilient or I'm just plain too stupid to feel knocked out! I am amazed how you can deal with a situation in many different ways and the processes you have to go through to achieve your goals. The demons you have to slay for yourself and the way you do that. I'm more surprised that I have the ability to be patient with people who are utterly stupid or just plain bloody ignorant. Whilst I like to show a hostile and belligerent attitude - I do try and be measured even when people are being downright stupid.

Of course I'd never ever wanted to be in the position, but I am. What can I observe looking back? Not a lot, I did some important things to aid my recovery and stuck to them. I took it upon myself to find out all I could - disturbing as that was. I know what the options are and I have the ability to discuss those with my consultant and her team. I trust my team and I do everything that I can to support what they are doing. I may not like what is happening to me but I will not stand in their way, I may whinge about it but I do get on and have the treatment.

I took it on myself to change the way I lived so that it would support the work that was being done. Being fit enough to be treated and fit enough to recover are MY side of the deal.

Writing it down is beneficial for me and (I am told) for others. Sometimes I don't like reading things that I wrote but I will leave the comments there for people to see.

I am so glad I didn't get anything more serious, more invasive or more deadly.

I still haven't realised how close I came or still could come with this. A few layers of cells - that is all, a few layers of cells.

We won't do was it luck or something else tonight - or as it is in the early hours of the morning. I'm afraid that hasn't stopped happening. I have the worst sleep patterns these days.

A very strange old day

It has been a strange day and I'm going to retire hurt in a moment :-)

So many people are happy for me and I'm sort of quietly happy for myself and my family. We are the only people not shouting about it. Strange isn't it. Almost a surreal experience - I wonder when it can have even been so arse about face?

Why am I not celebrating

I just spoke to my friend who is cancer free and therefore cured. Same with him, no reaction apart from thank goodness, that's good, nice, great etc.

We were working out whether that is because it isn't a binary thing. It doesn't just happen. That the stress and trauma of the past which is all bottled up and generally hidden is suddenly released and that is suppressing your elation.

Perhaps because you are geared up to hear the absolute worst case scenario and then get almost the opposite news - it is just so hard to take it in. Who knows - the shrinks would have a field day and I'm sure I could find my Kubler Ross area - if so then I am probably "testing" at the moment.

It is weird as I am gradually and quite cautiously letting people know and yet although I am happier today than I was yesterday I'm not ecstatic nor am I anywhere like where I thought I'd be.

Have I become over cautious, more pessimistic or perhaps something else has changed in me. I mean after this news I'm meant to pack it all in, buy a yacht and sail around the world or something like that and I don't feel like that either. I suppose we will have to see how it pans out over time. Sorry not to be leaping up and down and whooping and yelling. :-)

My New Toy has arrived

A proper blood pressure monitor with an arm cuff and averaging on it etc. First readings are good and show that my little wrist monitor wasn't as bad as we first thought.

I've now started a chart and will do morning and night as I need to go and see the GP next week for the next steps in getting this sorted. I've a feeling that Tuesday will be a fun day.

Gradually it sinks in

A flurry of phone calls this morning and a very sleepless night. Slowly I am beginning to "get it" - It's not seeing the light at the end of a tunnel I decided. It's changing motorways but not knowing how long you are on this one for as I still don't have a clue where I'm going, my maps aren't drawn yet and my GPS only tells me when I'm almost at the junction what to do next :-)

Note to self - stop talking in metaphors or similes as these are like signposts clouding your blogs?

Glossary / Vocabulary

I don't mean to stuff in buzz words but of course it happens from time to time and reviewing some of my posts there are a few words that need definition

THIS LINK takes you to a list of acronyms used.

Why is Abbreviation such a long word?

It still isn't registering

Come on brain - I sometimes have the brain speed of Homer Simpson. I've just written off to lots of people I know to tell them the news and I am not upbeat about it at all. It is all matter of fact and I'm not leaping around punching the air or any of the other things that I thought I might do.

I've probably spent so much time downplaying my chances so as not to be disappointed that the shock of getting a good end of term report has quite shocked me. No straight "A"s but with a bit more effort on both parts that is achievable.

Perhaps I have now glimpsed the beginning of the end or the light at the end of the tunnel. I've only seen this last 9 months as the worst period of my life and hadn't expected to start to come out of the other side quite so soon or quite so fast. I've hoped and I suppose I've taken some serious knocks along the way - the second operation and losing my job were two further kicks in the teeth I could have done without. But hey, this is good news and yet others are more pleased than I am about it.

It is damn strange me wanting to be free of this and working towards getting well again and then when I get some encouragement I blink hard and find it difficult to believe.

I sound ungrateful but I'm not. I'm certain that these are the tricks an illness like this plays on you. You just don't trust things and you need double assurances. Perhaps grasping for straws too early and being let down means you are just that much more cautious. I'm cautiously optimistic and yet, if all is clear there is light at the end of the tunnel - it is long term and we are probably talking about 10 years of treatments (maintenance) and flexible cystoscopy examinations before getting an all clear and, nasty little thing that BC is, it can come back and you start all over again.

There is no pleasing some people - I think I just turned into "Some People" :-)

Dare I believe the news?

I still can't believe that things may now be OK. I'm still stunned and I can't believe that I heard it properly. I'm hedging my bets and waiting until I hear from my Specialist in a few weeks time, with the evidence with the staging and with the next steps.

I really still don't know whether to scream it out loud or just sit back and wait. I can feel the stupid grin beginning to crack across my face already.

The Yukky Bits

Well there had to be some blood and gore I suppose. Fortunately the bleeding (in urine) only lasted overnight and so that was a relief. I think it was a few days last time and about a week the first time and then I managed to do myself a mischief later. It is always disturbing especially as there are bits in it but, at least this time I knew that it would be so. It doesn't make it any easier because it is such an unnatural experience.

I'm still taking it easy. I caught myself running up the stairs earlier and I really shouldn't do that. It goes back to the "how do you feel" and also that you can't see or feel any surgery (no scars or stitches) you have had so it lulls you into a false sense of security. For the next 5 days or so, everyone else knows best and I SHOULD listen to them. I really do feel fine now apart from the aches and pains around my middle and certain other somewhat swollen areas shall we say :-)

Anyway - yukky bits are over for the moment. It looks as if I have the next round of yukky bits to come if and when they prescribe the next course of BCG which (very much looks like) has worked on the initial areas.

Pulled and pushed and poked about

Judging by the aches and twinges and an oblong of missing hair on my leg (ouch - it looks like a 6x4 elastoplast has been ripped off my leg) - they sure did pull me around.

My stomach, back and legs ache so I guess that is dragging me forwards and backwards on and off the trolley and getting the cystoscope where it needed to go. That's painful just thinking about it :-)

Oh yes, that is painful too - imagine getting kicked there but it taking a few days to get the bruises out. Sorry I can't be more graphic than that but it is uncomfortable rather than painful and there is a fair amount of "holding breath" goes on when going to the toilet. It takes a few days to get back to comfortable and about a week afterwards things should be OK.

Scar Wars IV – A Scrape in Time

Scar Wars IV – A Scrape in Time
(Cue Music)
Episode IV
Our hero, captured by the NHS Guard is held imprisoned at their secret Headquarters cunningly disguised as a Hospital.
Stuffed full of Pills, brain altered through hypnotherapy he tries to escape from the evil clutches of Dr. Catheter and her foul band of followers, Captain Cannula, Sergeant Ivy Drip, Naughty Night Nurse (Yea I wish!) and Volunteer Trolley.
Can our hero escape, are the walls too high, are the steaks too rare, will the car park be empty, does anyone care?

Why am I asking you?

Light Sabres ready?

Underpants over your trousers?

Read on – if you dare…….

It was different this time. It was an early morning start, The Hypno stuff kicked in nicely and anyone who knows what a wimp I really am would be surprised as they only needed one herd of stampeding Elephants to get me in. Well no – I walked in fine and I amazed myself.

The evening before had been interesting as I wasn’t my usual bag of nerves and being hypnotised and also having some drugs to control blood pressure and heart rate were also a godsend as I was so much calmer this time walking in. I had even managed a good 5 ½ hours sleep – unheard of.

All that changed though. They looked at the list and I wasn’t on the morning list. I was on the afternoon list! Heart sinking like a stone we were about to leave but were asked to stay. 3 ½ hours later they allocated me a bed and so I was able to get ready, in some form. The wait had been almost unbearable but I listened to my MP3 player intently and just switched off – in my own little world. A real annoyance is that the have placed a water machine in the admissions lounge. I hadn’t had a drink since the night before and all I could see were people coming in and filling their cups and the water bottle gurgling. Another mind trick devised by the NHS without anyone thinking of the way it pisses off their customers.

There is nothing quite like having nothing more to concentrate on than having your operation. Have people at the NHS never had this experience? If they had they would surely change the system – no one “wants” to be there. So after settling in, getting changed and doing the obligatory measurements (NO not that one) I was fitted with my rather fetching DVT socks, Operating Gown (hello Cheeky) and placed on my pre op bed slider etc. I then had the rest of the time remaining to lay down, listen to music and look out of the window and contemplate the upcoming proceedings.

As is always the case when you are on “Nil by Mouth” the food trolley and drinks trolley come around, some one pokes their head in and then see the card and says “sorry”. The waft of food and clinking of tea cups soon gave way to a quiet period and I was settling back when about 2 pm the Registrar arrived to “consent me”. This is the form that agrees for them to operate, take appropriate action, turn you into an Arsenal supporter, have possession over your immortal soul and many other caveats and small print that you haven’t the time or the inclination to read thoroughly and that provide the team with a get out for everything including nuclear war, earthquake and political upheaval – all the things a standard insurance policy will not give. Acts of God included.

The registrar described the procedure. I have to tell you I questioned just about everything he said. The way he was talking this could be worse than the first or second operations. 2 days catheterization, possible puncture of the bladder wall! Jeeps what were these guys going to do to me – I thought it was a few biopsies – he was talking re re-sectioning and I had that last time. I did mention that and he said it was a "maybe" and a "worst case scenario". I started to prepare myself for a repeat performance of the previous operations. I had a totally different view on what they were going to do but, I had to be ready to wake up in the state I was in last time.

Having signed the form a few minutes later the porters arrived to take me to theatre. I was a bit surprised as I hadn’t seen the anaesthetist and so I grabbed a copy of the notes I made about my meds and took those down to theatre with me.

The banter was interesting the Assistant Anaesthetist was chatting to the porters about their tattoos and wondering whether it hurt. There was a sort of general consensus about whether it did or it didn’t and the upshot was that where the tattoo went over a bony part that it did. That decided - and me looking to find another piece of paint drying - I finally got wheeled in to theatre. We squared away the meds I was on, sorted out which hand to stick the cannula and, as always, I got the blunt one again! This was really the only point at which I felt anxious and I did some deep breathing until they put in some mild pain killers and then that was it. Off to the land of Nod.

I remember coming too and being very pleasantly surprised that I didn’t have a catheter in place. No drips, no water bags – I was even reasonably conscious.

I was wheeled back to the ward where I finally got some water. I had been gone just 1 ½ hours and of that 30 minutes were spent before I got into theatre and I reckon I hadn’t been in for more than 10 or 15 minutes.

I was told that I could go home if I could pee normally and so I started drinking loads of water. Knowing what it was like last time, I decided that the best strategy was to show them a good jug full. WRONG! No they wanted a series of these – If I’d have known that I would have worked on a series of smaller ones. Of course last time I did that they weren’t happy and did bladder scans. We now come back to not being allowed to drink for what must have been close to 18 hours by then. I had no drip to hydrate me and so I was drinking litres of water at a time. The upshot was that it took me hours to produce the required quantity and yet if I had managed to show them a steady series I could have got out earlier. In the urology ward I think things would have been different but there you go. I got out at about 10 p.m.

The Specialist saw me and was very upbeat. A very small area that was suspicious, which was TURBT and taken away for analysis and a series of biopsies on the original and other areas. The view that they had was that apart from the one tiny area everything else looked fine. In a few weeks they might be able to downgrade. I might have to do the BCG again but (hey) that isn’t so bad.

Right now, I am coming to terms with what that means. I think it may be too early to break out the Champagne but perhaps a small celebration might be in order? Hey, why not a big celebration? I think it will take a little time to sink in, part of me is saying it is great news - the best, another part is saying that it is a little disappointed that not all of it was got. Another bit, unheard until writing this says something entirely different - it has to be good news as if they had upgraded rather than downgraded then you would be in trouble. It's like when people win something and they say "it hasn't sunk in yet!" I know exactly what they mean - I don't know whether to laugh or cry, run screaming out into the woods or what. I am very pleased though - relieved and pleased.

News - some good some bad

But - on the whole it is all good news so far.

Bad News:

• They had my appointment wrong I should have been late morning - I could have ate and I could have had some drink (more later on why that was important)
• There was s small area they had to TURBT but it must have been small as I was not catheterised

Good News:

• Apart form a very small area everything else looks good and should be downgraded in a few weeks
• No Catheter - you cannot believe how much better you feel when you haven't had one
• Home in a day
• I was a lot better than I normally am

I am home - I am OK

What a day - what a day..

I'm home, I'm tired, I'm going to bed but I am fine. More later.

Less than an hour to go now

I've had my shower and I am just going through my check list of things. I have to be at the Hospital at 7:45 meaning about 7:15 away from here, getting parked and then walking into to the admissions lounge. I do hope that they are not showing Casualty or ER like they did last time I was there. Either these people have an advanced sense of the ridiculous or they are sadists. I think they had one of those programmes last time live from some hospital and frankly it did nothing for my nerves. I remember turning the damn thing off when someone left the room.

For the first time I'll have already had my assessment and so it will be straight onto the ward without all the medical staff fussing over me.

It seems quite strange me calmly sitting here at the PC when all the other times I have been sat here but playing solitaire or tertis or some such thing with my headphones on and locked away from the world. Today I'm the opposite to that.

Actually Slept

A first - a reasonable and quite creditable 5 hours sleep. I listened to some music and then went to sleep. Had some strange dreams but not too upsetting - all were about different experiences of what today will bring.

Woke a few times but other than that - it hasn't been too bad. I've had my tablets with a tiny amount of water and I'm just going off now to have a shower and start to get myself ready for the rest of today.

I don't feel the normal dread - nor do I feel anything approaching it. A little apprehensive of course - but otherwise OK.

114/79/65 - that will do nicely :-)

Support

Nice to get some phone calls of support this evening and I'm still feeling OK. A little bit "quiet" but OK nonetheless. I thought I was going to go into one of my shells for the evening but that hasn't happened.

Everyone else has gone to bed - I am just watching a film and having a last drink. I can then do the last few minutes of checking I have everything and then be ready for the morning.

I'm just surprised I am still keeping it all together.