Monday, August 31, 2009
I didn't get much done today, went for a walk, bought some beer, sat in the sun, drank some beer and that was my day done really.
Still not convinced about what I want to do next though.
I actually started for a very short time to feel sorry for myself or more like it started to realise what I'd been through these past three years. Then I considered that what I thought might be a sort of freedom isn't actually that at all. Just remission (maybe "just" isn't the right word in that context). Any sort of remission is good what I meant was that it would be a constant for the rest of my life and that is when I wondered if I'd be strong enough - for the rest of my life - to continue going into Hospital, having operations and so on. There must be a point when you say "enough is enough"?
Anyway, it appears to be the time for reflection and formulating plans to go forward. My mind is full of crazy stuff like give up work, go on a year's sabbatical, see the world, do something locally, give up anything that smacks of organising other people's lives and so on. It's just a feeling to get away and get some me time and try and re assess, re prioritise and re arrange my life and my brain. The plans that I had three years ago that had been formulated over many years had a different direction. I've done lots of short term tactical things to live through the last three years and swerved in and out of ideas and schemes and as a previously well organised person, I'm living a less than organised life (although perhaps a little more settled routine wise). I think I'm through that now and suddenly there is the opportunity of having the last 1/3 of my working life doing something different to what I've done before.
Sunday, August 30, 2009
It is the early hours of the morning and I was dozing away and suddenly there were flash backs of the time the children were small and trips we did then and some flash backs way before then to a place I cannot have been to for 40 years or more, just remembering the heat and smells of a late summer day on a walk when I was young. Now I'm saying they are bad dreams and now describing them they don't appear to be that bad but they have stirred up questions that I don't like the sound of much. Big doubting questions about what I've done with my time here on the planet and whether those good times with the children could have been better, could I have done more, did they enjoy it and a raft of other strange feelings about the past.
Now the trouble is that the past is the past and in general terms whilst there are some regrets, in reality, what is done is done and I can't change any of it and I'm not normally troubled too much by the past once I've dismissed it and moved past it. A bit like I was saying a week or so ago that the holiday was about the experience and not necessarily the photographs I brought back. The moment was the thing.
Anyhow, not that it matters much as I'm sat here at my PC in the early hours and I'm wondering quite what on earth all that lot was about. I'm sure there is some strange lesson in all of this but I'm blowed if I can work out what it is. I'm guessing it is just another part of the territory. Perhaps it has something to do with the series of cancer programmes that have been running this week on the TV or perhaps it is something else in my subconscious trying to make itself heard. Well I suppose I've heard it - I just need to interpret it and understand it next I guess.
Saturday, August 29, 2009
It is the end of August and a strange thing happened this morning when my mail arrived and there is an investigation into a potential pension pot that I knew nothing about although the company rang a bell. I wonder if it is my old company that was bought out and that I was made redundant from about 3 years ago? It is in the same area and it was owned by a number of local businessmen. Perhaps it was - it will be interesting to see what will become of the investigation.
September looms large and that must mean it has been close to a year since my last BCG treatments - in fact I think they started a year ago Monday week as they missed the Bank Holiday Monday. It doesn't feel like a year has gone by though.
This week sees Steve Kelley having his next Judgement Day - a Poke and Peek cystoscope and some BCG to follow. We are hoping for a Hat-trick and that we all get to keep clear, move on and progress in the right direction.
My boss returns on Tuesday and somehow in the next two months we need to fit loads of work into the time. Unfortunately - my colleague is off on holiday which is OK but it means that I may have to pick up his work when I have a full workload myself. I have plenty of visits and presentations to write and deliver. It will be a challenge and I'm sure I'll be whinging about it.
L got a Sunday Job but the day she starts was the day we were meant to be at my parents which means they will have to come back a day early so she can start work. Its all complicated stuff, she passed all her exams and at the right sorts of grades and starts 6th form next Thursday. A is looking for a job and off touting her CV around at the moment. Her University doesn't start until the end of September and that is preceded by Freshers Week. I think we also have managed to satisfy the funding people that the company I used to work for (see above) no longer exists and so that, after months and months of messing about, looks to have cleared the way for A to get her funding. Crazy system and an utter nightmare to work through the intransigence of a poorly thought through business process - they should get a professional in there and sort out the exception process.
It is looking so good outside that I think I ought to get out there and grab some rays rather than being sat at my PC. Bye!
Friday, August 28, 2009
There remains what is the next steps in the ongoing observations stage and whether or not these full biopsies (which I read the other day are the "gold standard" for staging, grading and observing) are going to continue and if so at what frequency and for how long. I'm bracing myself that these are for life until they find some other way of sorting this out.
So what's changed? Well it is most peculiar really as I've now got a bit of a hole in my life where bladder cancer used to be and I'm suddenly getting back to my old self in terms of getting things done and getting back on top of my time management. Stuff that I thought had changed a long time ago for good is returning and most markedly the want to shake off the apathetic part of the changes I've had and get back to being a little more organised and a little more proactive.
Additionally there is this urge to do something again. I considered going back and finishing off my University Course but that can wait I think. Whilst I really enjoyed it, I can't see that I want to have that level of commitment right now. I'm getting involved in more getting out and about. I'm off to Lincoln soon and can drop into my parents on the way home and then off down to the depths of Kent/Sussex a week after that. I actually fancy a 6 month vacation but I doubt that will happen. I don't feel like making my working arrangement permanent in fact I'd like to cut back and only do a few days a week although I can't think why.
Yes - a very strange period indeed as everything feels OK but isn't. I feel that I could quite easily just walk away from here and go off and do some wandering for a while and additionally other stuff that used to be important just doesn't seem to be so now. There's an opportunity to go crew a boat through a friend of mine - that would be 6 weeks or so and all I have to do is find my food and beer money. I was sorely tempted to go and do that - it just seems a great thing to do at this moment, just get away from everything and just take some time to myself and redefine what is important and what I now want to do.
I have to say that I find this quite an unexpected outcome after all, it has only been 2 weeks since my operation but the news that perhaps the worrying part is over may just be what has triggered this next phase off. It will be interesting to see if it is just a set of feelings or whether I do actually end up doing something about it?
I decided not to go to work so as not to aggravate the situation - you may recall a couple of operations back - I managed to really make myself bleed a lot through exercise and a couple of miles waking to and from the station either end of this morning made me reconsider whether it was a chance worth taking.
When you have blood in your urine there is also a very slight tingling that goes along with it inside your urethra which also isn't pleasant - it doesn't actually hurt though.
So I will continue with my work from home today and give myself a chance to get shot of all the biopsy scabs today.
Thursday, August 27, 2009
It is GCSE day here so L is going to find out how she has done in her exams. We will know later on today how that has gone as they have all disappeared off to the school to get them.
I appear to be fine and glad I am not having to go up and down by train to work. I will probably go in tomorrow but again, the strange part of this is that I add 3 hours to my day to do what I can do sat in my home office! Bizarre as that may seem it is still the mindset of most businesses these days - it is a crazy scenario as I don't get as much work done at the office as I do locked in my own office here.
Tuesday, August 25, 2009
I got to sleep about midnight and I was dog tired. Today, the family came up to see my building and have a tour and then as they left after lunch a friend called and we ended up drinking all afternoon and getting home after a curry in London way gone 9 pm. I am working from home thank goodness tomorrow. I am going to bed early tonight as I can barely keep awake.
It was interesting when I said that I felt I needed to get away on my own to think things through. Interesting why? Well my mate said he'd come along with me - which kind of defeats the whole object really :-)
Monday, August 24, 2009
It was nice to see my colleagues again though and there was much lively banter going on. Nice to be back.
Sunday, August 23, 2009
It will be a bit rude getting up at 5:30 tomorrow again but hey, I need to get back to it. I now need to wait to find out when my appointment is due. Hopefully not to clash with my trip up North and then on to see my parents.
I'm wondering also whether to take myself off for a week or two just on a sun holiday even if just on my own. I just fancy getting away and having a long think about things.
Things? I think that the news is pretty good from the biopsies. I think that this can be a turning point in terms of getting beyond the serious bladder cancer bit and on to living with it. I'm probably not making much sense about this at the moment. I think that this is a threshold, a change in the journey and it means that I can feel a change in my mood, a slight lightening perhaps but also a void that may need to be filled - I just don't know yet.
Anyway, just something I'm becoming aware of. Things change all the time and this next set of results will, I hope, allow life to move on. Let's face it, it will never get back to "normal".
Back to work tomorrow but I do think that I might need to consider doing some work at home or only doing a few days this week. I do feel surprisingly weak considering I've had a week off to recuperate. Anyway I will see how I feel when I get to work.
Saturday, August 22, 2009
I am taking it easy again today. I think I will go into work on Monday but will probably just do a few days and do some days working at home to make sure that I recover properly - I forget quite how much these procedures take it out of you.
The weather is behaving itself today and so it is quite pleasant being at home and just lazing around.
Friday, August 21, 2009
Tonight, our local Curry House has provided discount vouchers and so 4 of us are going out for a few beers and then a nice curry. I am going to walk down as it is about 20 minutes away and downhill so not too strenuous.
I am looking forward to it and just hope the showers have passed by now. Thank goodness it is a lot cooler (less humid) today than it has been.
Formula 1 is back and I'm just watching the first practice session, the Ashes cricket is on, the World Athletics too so there is plenty going on. Somewhere along the line I was meant to be doing some finances and a little work but what I might end up doing is spending a day or two next week doing that and go back part time.
I continue to take it easy remembering that on one of the earlier occurrences I managed to set myself back quite seriously through driving and exercising too quickly.
Thursday, August 20, 2009
You forget so quickly that you mustn't strain yourself. The trouble is, you just don't feel that you can't!
It doesn't look as if I've done any damage - I'll check tonight and tomorrow.
I like seeing my photographs but realised that being there and experiencing the places was better than having the photos - I can always look on line and see where I have been after all?
So maybe there is some sort of switch that goes on/off that takes away the need for nostalgic keepsakes and attachments to inanimate objects?
Again, just one of those things that I have noticed. I really should get out more :-)
By hanging on to your bladder you are always susceptible to BC returning. In a way, you can understand why their is a two part battle going on. On the one hand you do everything to keep well and on the other hand your brain is the other thing you battle against. Keeping on top of it is important, keeping positive.
Wednesday, August 19, 2009
I think I have managed not to go there for 9 years. It looked OK though and there weren't as many people there as I thought there would be.
It was actually quite nice to get out of the heat and into some air conditioned comfort.
View Larger Map
I've sat indoors for the morning and will probably go outside as the sun slides around the side of the house. Middle of the week and I hope that I will be fit enough to return to work on Monday, it certainly feels OK so far. i might even give myself a part time week next week to ease back into work.
Tuesday, August 18, 2009
It is a lovely day outside and so I have a couple of beers in the Fridge and will sit outside and enjoy a cool beer in the afternoon sunshine. This recuperation lark is nice....
Because you can't see the internal injuries it doesn't mean they are not there. Mind you it doesn't mean that you shouldn't get back to normal as soon as possible either, you just have to take it slowly.
Flocky Bicep is coming over to buy me a coffee or a beer later today which I will look forward to as he is great company and bound to make me feel good. Not that I feel anything other than positive at the moment. I certainly have my sense of humour back and the depression and gloom of a few weeks ago are long behind me. Clear again means that the possibility of recurrence continues to diminish (but not go away).
This is another step in the bladder cancer journey, another tick in the box, each time you pass a milestone, a new path opens up and things become less dim, clearer and the path ahead looks more positive. You can start to look wider, higher and towards the horizon. You can begin to plan a bit more and you are less inhibited by your disability for disability it is. Physically and mentally.
Looking forward to seeing Flocky later today.
Monday, August 17, 2009
Other than that I'm a bit tender and ache a fair amount around my stomach and groin area. It is still a little stingy to urinate but nowhere near the stream of fire of the past.
Getting used to sitting around and attempting to not strain myself is fun. Day time TV is rubbish and perhaps tomorrow I will spend a little time taking myself for short walks to ease the boredom.
The annoying thing is that I really can't get about or do too much or I risk knocking off the scabs and starting myself bleeding and having to have more time off.
So I am sat around here just taking it easy - I suppose there could be worse things to do?
I have to say one Doctor gave it a double take and actually walked back in. "It works on so many levels" I told him. And that it does.
I'm not dead yet, I'm very much alive and the news keeps getting better and better.
I learnt tonight that I may have to continue to have these full cystoscopies for the rest of my life but at varying frequencies although one authority recommends them yearly for the rest of life for high grade patients such as my case. I suppose if it means having those and staying alive most of us would come around to that way of thinking. But again, advances in medical knowledge may mean that it will change over time anyway. Who knows, I'm just glad that I'm still here 3 years after I thought I wouldn't be and I'm more upbeat after this operation than I have been in a while.
Anyway, I made my little statement and kept my sense of humour and as someone told me after they rang a few hours after I got out - I was still laughing and joking even though I felt rough. It's good medicine, you should try it sometime!
Sunday, August 16, 2009
Our hero Dave-Sky-Nando* has to endure another trial by cystoscope.
Dave-Sky-Nando, Jedi Master, Cancer Survivor and all around good guy, entered the concrete and glass citadel and the ward that is the pre-theatre preparation centre. He was pleased to observe that at last, the old surgical operating gowns “for Hospital use only” which – let’s face it are not a fashion statement, aren’t big or clever and didn’t exactly fasten properly leaving the patient to “moon” those within eye shot of the wearer had finally been consigned to the incinerator. The new, rather tasteful gowns are two tone blue, that tie up properly and overlap sufficiently so as not to leave the rear exposed unless you want to wear them that way.
I must be getting used to it as blood pressure and heart rate were high but not out of bounds like normal. An MP3 player with classical and easy listening music assisted the 3 hours between admission and being wheeled to theatre to go reasonably quickly.
The ritual of going through your details many times to ensure they have the right person and the other various checks are undertaken at this time:
- False Legs or limbs?
- Metal work in body?
- Loose teeth, crowns, caps?
- Mobile phone, hidden camera?
- Picture of the Queen, comic or other publication?
- Sharp wit?
- Uncut toenails?
- Aircraft carrier, space station?
- Criminal record (Mcfly, Robbie Williams etc)?
- Machine gun, IED, tank?
- Any drugs, cigarettes or alcohol?
- Any scissors, water, lipstick, packed lunch or other dangerous stuff you can’t take onto aircraft?
Once you have convinced them that there is just you under the operating gown they finally leave you alone after you have signed your consent form.
This time and probably for the first time, I let things just happen as it is going to happen at their speed and not mine, I can’t influence anything including their schedule and the way they do things at the Hospital. I see my consultant who has a quick look at the notes and assures me as the anaesthetist checks me over that it is the usual inspection and do I have any questions. I don’t except that when I finally find out that the Registrar did me last time and I look into the eyes of the butcher who gave me such a rough set of biopsies then. I don’t know at that time, but I soon find out that he did me again this time. His trademark being that you end up with a catheter for his cystoscopies. A lesson from some of my Jedi friends might be in order....
Wheeled to theatre the procedure is run through again, checking who you are, if you have any contraband secreted about your person. I’m Ronnie and I’ll be preparing you. He did well and the cannula went in easy enough and the check list was mechanically run through whilst we waited for the theatre to become empty and for the anaesthetist to come in and deal with.
IM1 n U?
Stupid Droids :-)
A guy who looked like Yoda tipped up and he was the head anaesthetist – I had met the junior who was also there. “”Sleep dreams sweet put you this will” said one, the other added “holidays nice you think now of”. “Ouch” I said as he started doing something nasty with the back of my hand where the cannula was and I could feel quite sharp pains in the vein there. They then stuck a mask on which was a first and so a combination of things eventually saw me off to sleep.
The next thing I remember was waking up, oxygen mask on and being really pissed off that there was a catheter in me again. It makes you feel as if you want to urinate all the time but can’t. It is annoying when before you haven’t had one and then you wake up and find that they’ve pulled you around enough for a second time to do it again when before it hadn’t happened. You also know that you aren’t going home that night like they told you – many times before - that you would. I was already pretty much sure that I’d be in overnight as it was an afternoon slot.
Two hours after going down to theatre, I was in a ward, without my belongings which were somewhere else as I wasn’t in urology where I should have been but another surgical ward. At least it wasn’t the one I was in last December which really was the ward from hell. Here the nurses all seemed very nice and after the two others patients I had shared the pre theatre ward appeared, our belongings turned up. Mind you, as I was all bagged up I could hardly move, another reason I hate catheter is that you are really limited in your movements. I had to wait until Mrs. F. turned up to get my stuff out of my bag especially my MP3 player.
The automatic bed was working well but again I had real difficulty trying to adjust my posture as I had this bloody tube hanging out of me.
It was on return to the ward that the full horror of the next 15 hours or so became blindingly apparent to me. The chap next door to me was obviously struggling. He wasn’t a urology patient but had just had a violent reaction to morphine and wasn’t allowed to eat or drink. However, he had what I can only describe as tourette’s syndrome. Up to 4 or 5 times a minute for all his waking hours he would be moaning, groaning, sighing, ooowwing, arrring, coughing, spluttering and so on. Now the nurses realised and tried their hardest to sort it out and tried medication etc. However, on and on it went. I used my MP3 player to best effect that I could without making a nuisance of myself and finally at 2 am he finally fell silent. I managed to lie on my side, deaf ear up, and get a few hours sleep. At least at about 4:30 when he started again I was sufficiently with it to turn on my MP3 player and try listening to that. I must note that my MP3 player gave up the ghost at about 9am and so if there is a next time I ought to take both players as this one needs a USB port to recharge it.
At 5:30 I had my vital signs done and good grief, 139 over 89 and 86 heart rate – amazing almost normal for me when at home where I try and keep 130 over 90 as a maximum. They then took out the Catheter which was a relief but it was a large catheter not the small one I had last time so I felt quite sore. I had been bashing the water back since 4:30 and so was ready to start to show them 3 clear urinations for which they leave a bottle. I was able to do two before breakfast and one afterwards. However it took over 1 ½ hours between sorting that out and actually getting discharged from the Hospital. I had to slightly force the issue but I was pleased to get out and get home.
The best news of all really is that it all looks clear, no red patches or anything else unusual they still took a full range of biopsies though. The lab reports I hope fully support that and even more than that I hope that this really is the last time I have to go through these full biopsies and cystoscopy again. Mind you, I thought that the last time until I saw my consultant. They also said they wanted me to do more BCG but then changed their minds. I’ll find out in a few weeks when I see my consultant.
There’s a bit of a mess where the cannula went this time and I am a bit tender today – I guess they smack you full of pain killers and today is the first day that bruises are coming out and that I am actually feeling sore in all the places you really don’t enjoy being sore in.
This time I knew the drill and what was expected of me and in both pre-assessment and the main operation itself, I expected things to go at their pace and not how I wanted them to, I drank plenty of water before arriving at the Hospital and all the time (when I was allowed to) which meant passing the tests and irrigating the bladder was assured. I was still slightly put out that they managed to end up sticking a catheter in and one of the big ones too. If I never have another one it would be too soon.
In terms of how do I feel about it now – well – I am still taking in the fact that it is clear and I am not absolutely certain what that means. I mean it looked clear last time but they found atypia. But if it is clear then I think that I go onto a maintenance holding pattern. I am hoping that this is flexible cystoscopies but there is a nagging doubt in the back of my mind that thinks it may mean I have to continue to have these full versions for many years but with greater periods between each one.
My continued thanks to my family and friends both online and offline who continue to look out for me and send me best wishes and prayers.
I hope that there won’t be a Scar Wars VIII.
*A creation of Steve Kelley Inc. :-)
Saturday, August 15, 2009
All good fun but my back and groin area hurt as do my arms which they no doubt shoved somewhere. Where the cannula has come out looks a right mess too. Mind you, not as bad as the last time - at least the staff knew what they were doing and were pleasant and civil.
A good night's rest without the tourettes wittering of the guy in the bed adjacent to me tonight thank goodness.
However, after all of that, little sleep, catheterised (again) and delays getting home the upshot is that things look good inside Mr. Bladder and they still took biopsies and still pulled me around a lot. However, I am comforted by "We don't want to second guess the lab results but it looked clear" will certainly be something to hold onto until the out patients appointment in 2 or 3 weeks time.
Oh yes - and I'm tired - Scar Wars VII will explain all :-)
Friday, August 14, 2009
Just got the MP3 player all loaded and I am now plugged into some music which is nice as that relaxes me.
Still not too bad although my blood pressure readings and heart rate are all up - what a surprise :-)!!!
I'd better go and do my packing and pretend that I want to go and get this done. At least the music is sorted out. I have a book that I can actually read without hurting my head and I just hope that I don't have to hang around there too long today / tomorrow.
A little churning in my stomach, a few nerves of course but not bad. This time tomorrow it will all be over and I then have to wait for the outcome. I might get a progress report based on the visual. I want to hear that everything looks alright of course. I'm not sure how I would feel if it were a recurrence, I'd have to take that and think about it.
I'm loading music to my MP3 and I have decided not to have any of the stuff I had when I went in the first and second times as when that happened I had cancer and of course I don't now. There are a series of songs that I associate with that time and whilst I like those songs they do make me feel quite strange these days. So searching for other sounds to listen to. Plenty of classical and less rock and roll.
It is just 3 hours away until I go in and I haven't packed my bag and I'm going to leave it so I have things to do in the next few hours. I'm going into my quiet, lock me away, don't talk to me mode right now and I lock myself down into myself and become quite monosyllabic in responses as I'm just not feeling like entering into a conversation. I'm sure that outwardly I will be pleasant enough but in reality I am just shutting myself down and keeping within myself.
Sure the NHS has problems but no one needs to fund insurance and everyone can have treatment. There may be some issues with how it has evolved and inefficiencies and costs and budgets are all over the place, it doesn't mean that people die or that it is somehow third rate. What I'd suggest everyone does is look at the UK and other European systems and see how they work. Some of the French Hospitals are fantastic. The Scandinavian countries also have an incredible record in this area.
The argument shouldn't be about whether you want an NHS in the US it should be whether the way it provides equality for all can be used as a model. If you have ever read Steve Kelley's blog you will see that there are fundamental differences in the way healthcare is delivered and in the US there is more choice and things are just massively different. However, we both survived and we are both on different ways of being treated. None of us is saying which treatment is the best as the results are the same and despite my pointing out the issues that I have with the system, it doesn't mean, as some were stating on the TV that there are massive problems at a grass roots level.
Anyway, as I'm about to go into hospital today it was perhaps going to be on my mind. I'd just wish someone would deploy some facts to the US citizens so they had accurate information to base their decisions on. It appears that those who have most to lose are providing only one type of bullet and the opportunity to have a balanced argument cannot happen with only part of the story provided for the debate.
Feeling OK, quite mellow about things really. I'm quite impressed that I am quite so chilled about it this time. I just hope that it lasts and I look forward to getting this out of the way as soon as possible.
Thursday, August 13, 2009
Not too worried about it really this time. I know the score, I've done it before. Worrying isn't going to help me and I'm back into the right frame of mind.
It looks like all of the BC warriors are going to find out their fate in the next few weeks. HK is clear - brilliant news and has three low dose BCGs to contend with. Steve is due up for his scope poke and peek in about 3 weeks time.
Anyway, it looks as if we will be out of here in 20 minutes or so and I had better go and get ready - or as ready as I will ever be. The Bank of Dad and my credit cards are all I need :-)
I'm still reasonably positive about tomorrow. I know it isn't going to be great but at least I know what is coming and at least in a few weeks I'll know if everything has been successful. I was amazed to hear that a friend of mine is still having the occasional full set of biopsies. He has been receiving treatment for 10 or more years and is on the "old" regime.
Here's hoping that things get moving in the next few minutes or else I will be bored stupid. I also want to get packed up here so I can get home and take L and the family out for a meal tonight. That will take my mind off of tomorrow.
Wednesday, August 12, 2009
So my expectations are much different to the previous which looked at how treatment had gone. This looks at how not treating me has gone. We now see if leaving things to their own devices has actually left my bladder - clear or not? If this is clear then we cross another bridge, change our roller coaster ride and move to a different level once again.
The whole feeling is different because I haven't just had treatment and need to see what has happened. It makes for a different approach to what you are having done and why you are having it done.
I'm hoping but not banking on this being the last one of these full operations but I do also have to realise that I did have an aggressive form and so I might have to come back for more of these operations in the future if my team and my consultant deem that necessary.
At least I am not as uptight about it as I have been - unless - of course - they turn me away - they didn't think that was likely this time as it is a quieter period.
Perhaps it is just something you come to accept after a while, it is now routine and may be for the rest of my life. You just have to get on with it and accept it. I like the fact that lots of people think I am being quite good about it all and keeping my sense of humour. The answer must always be with cancer, you have to rule it and not let it rule you.
I am most impressed with her finances in that she saved well over £4,500 to go on her trip to Argentina and almost all of that is money from work, paper rounds, bag packing, boot fairs and sponsored events as well as birthday and Christmas money etc.
I'm feeling quite laid back about Friday, noticeably so this time and I can't imagine why that would be. Even on Monday my blood pressure was reasonable (considering) and I wasn't quite as bad as I normally am. I'd hate to say that I am getting used to it, although I do know the ropes and I am an old hand knowing most of the Urology nurses by their first names as well as Audrey who is the pre-assessment nurse. All of them are just great.
I surprise myself with how relatively calm I am writing this and I hope that I will continue to be able to keep this level of calmness for the next few days. I doubt that I will come home on Friday but if I do I have assurances that the party will be dispersed early. I'd actually, on this occasion rather not be a party poop-er.
Mrs. F. told me that my next door neighbour isn't well again. He had a lung removed with Lung Cancer and looks as if he may have some sort of infection but he is going in for X-Rays. Fingers crossed for him.
My Open University colleagues dropped me a line - it seems many of them passed and they are arranging for a meet and a drink which I do hope I can make as I was disappointed not to complete the course. It would be nice if the Hospital actually don't beat me up and I can make it. They all sound very proud and excited about it - which they should be it was a great looking course and I just wished it could have turned out different.
Tuesday, August 11, 2009
I remain quite positive about this still. I like it that most people think that I am being very brave and good humoured about it all. I suppose I am - and I have to, there isn't really any other way of looking at it is there? You have to take it as it happens and I can't do anything about what they find inside.
I see that HK in Toronto had his Cystoscopy today so good luck to HK for a good result. It is nerve wracking and a bit like waiting to see if your lottery ticket has come up except that in this case you desperately hope it doesn't come up :-)
This is the entrance to the Peterhof Palace some 40 minutes drive out of St. Petersburg on the Gulf of Finland. If you think this is amazing, wait until you see the fountains. I think I can see after just a few palaces like these why the had a bit of a revolution! Just amazing and these aren't all the fountains either, there is a whole park full of them.
At work at the moment, just waiting to go out for a drink with friend and catch up on his news.
Monday, August 10, 2009
So a few of us on at our dining table and up in the night club. That's nice as at least I may have a few photos for my mother who likes that kind of thing.
It is a strange thing but I have almost completely turned myself off sentimentality now. It is most bizarre but it isn't important anymore to have photos of when I was younger or any of the history stuff that I treasured before BC. I watched a few old videos of the girls the other day and it did nothing other than upset me and whilst it was nice to see and remember those times it all seems like another world to me now. Some huge lump of my life got ripped out and thrown away when I got cancer. I hope that it is transitory and that all these things I have cluttering up the house and gathering dust - for that is what they actually do - make come back to mean something to me later on. Nostalgia not being what it used to be perhaps? :-)
When I say upset me - it actually means that I beat myself up about almost anything that I see. I wasn't a good father; I didn't spend enough time with my kids; dah de dah de dah.... You know anything to beat myself up and that, at the moment, is the way it is. If I do look back I find myself giving myself a hard time for drinking, smoking and all the other excesses of my youth and some of my adult life too. I argue with myself that this is what you do and that everyone smoked and all of this sort of thing and I blame myself for my situation and for not having achieved some sort of imaginary high ground that my mind tells me I should have done. It is a strange thing n'est pas that your brain which belongs to you actually comes out against you and beats you up with such painful thoughts and vicious accusations. My brain is far worse than any bully or masochist :-)
I'm not sure why any of this should be, it just struck me that the photos I have don't do anything for me like they used to. Almost as if the past is the past. Perhaps things have changed so much that what they old things represent isn't important anymore. If these things aren't important anymore, I still have to find what is important of course. That perhaps is the next part of the journey and one that will be made easier if the results are good after Friday's operation.
The answer I think is that I am important but I can't easily live with that. I can't easily accept that I am the centre of my own universe. My family and children are important - but they have all just proved they can go off on their own and even at a young age have planned, worked for and undertaken journeys and adventures of their own.
It goes back to the recent dreams (they have returned pre-operation - including the nasty ones) and my own review of what "value" I am now to my family unit? It is a wrestle with my own self belief and self confidence and it relates to where I am in terms of living, treatment and what has happened to me in just three years. I'm in no doubt that this is just another phase you go through when you survive BC. The old survivor syndrome and why did you spare me question?
A few days at work and then Friday beckons - I hope that my surgeon will once again be able to tell me that things look clear and that we can plan the next steps in my journey. That being the case I hope to drown my brain with beer (Thanks Homer) and start to sort my life out - it really can't be that complicated :-)
Doctor was great and all tests etc were OK so I go in on Friday. I was finished in less than 30 minutes. I think I ought to just get dropped off next time (if there is a next time) so that I am not quite so hot. It is a 20 minute walk at my normal speed but I did it slightly slower at 25 minutes. Even so, I was a little sweaty when I arrived.
It was a completely routine thing today. I knew exactly what to do and when to do it, the ECG machine behaved itself and I managed a couple of pints at the pub on the way home as a reward for having my blood test which, as regular readers may know, is not my favourite thing on the planet.
So all is now set for Friday. the Doctor said that I might go home straight afterwards. I said that if they managed that it would only be the second time and that the butcher who did me before meant I was catheterised overnight which had been a first. Hopefully he took note of my comments. I bet that they will let me go as it is Friday and it is about the only time with L's party that it would have been good for me to be in overnight :-)
I just went to do the MRSA swab tests and the liquid that they suspended in has hardened so I cant get the swab into the tube!! So much for making things easier.... Doh!
Now I'm feeling a little bit deep breathy - exhaling long and hard. I don't suppose I'll ever get used to it, its just the way I am.
In a little over 4 hours I have to have my pre-assessment and Friday I have to go in late so that means an afternoon operation. Not sure a Friday is a great day to do it. One minor blessing is that L has her 16th Birthday party that day in the garden here and so at least I don't have to be around for that. Last year it was a nightmare to sort them out and get them out of the house/garden. Apparently she was none to pleased about the way I spoke to and ordered people out but then - it's my house and I don't take kindly to having to tell anyone more than three times what I expect them to do.
I'm reasonably calm at the moment however and I feel OK. Whilst I may not be looking forward to going in, I've managed to rationalise it in my mind and I suppose that I just have to accept that this has to be done to be absolutely certain that things are progressing well.
I remember being quite put out that it wasn't last time I had it done as I was certain that it was going to be the last operation and that I'd be having the flexible cystoscopy done. As it is I am having the rigid cystoscopy and so they have to knock you out for it.
I am hoping that if this is clear, the next steps will be to move onto that observation stage. At the moment they are checking because of the Atypia found last time. Better safe than sorry.
I also wonder if, because of my age, they are making sure that things are OK and also that I can probably handle yet another operation. I still can't remember how many this is - so perhaps I ought to tot them all up and stick them in some sort of league table so I can remember. Maybe I'll just do it when this lot are finished.
Sunday, August 09, 2009
I suppose it can't be helped that I am a little heavier than the last time I went in. Other than that I will just have to see what tomorrow brings. Friday just needs to be over and done with and I hope that by this time next week I will be able to be sitting here writing some good things about the procedure - unlike last time.
To tell the truth I have now forgotten how many times I have actually been into Hospital for biopsies and TURBTs - I think this makes 7 times but I'd need to go and check that out.
I'm trying to be balanced and tell myself that I'd have settled for going in every 6 months for the rest of my life if they cured me - that would make me shudder but you can probably see that the act of reminding myself that the treatment has been life-saving brings some perspective back to the situation. I forget (like most people do) that through all the horrible things that have gone on the undeniable truth is that I am here still, I am in good health (although not great health) and that I need to count myself privileged to be in a position that the next operation is to check that things are OK not to remove tumours or anything else worse than that.
I've been quite down this past week and pretty downbeat, pessimistic almost (and many who know me would realise that isn't my usual state). Today I'm in a different mindset and I'm beginning to think things through more - rationalise it all out and make sense of what is going on. I did get a bit of a shock when I daydreamed of going to the woods and saw a picture of myself hanging from a noose on a tree - that snapped me out as well. I hasten to add, it (suicide) doesn't enter into the equation but it was a vivid representation of the depth of last week's depression. If you are wondering, I wouldn't because of what it does to those who know or knew you and those who found you and all that sort of stuff. I can understand why but not why you would upset loads of people by doing it (train jumpers for example - and I saw one just the once and it did upset me too). Yes, a daydream and a warning painting - the brain is a complex thing.
I have to face facts sometimes that I'm working with the cards I've been dealt and worrying about things beyond my control. Worrying doesn't change things but it is so much part of the territory (the Doctors don't tell you about) that I should be getting used to it by now. In some ways, maybe I am that I can work it through and know that it is transitory in nature. The whole Cancer trip is a fairground ride where someone has tampered with the rails or half sawn through the wooden supports of the roller coaster you're on. To your Doctor it is a tumour to be removed, treatment and checking and best care for a cure or remission. if it is worse then there is no doubt a protocol to follow in terms of whether they have time and ability to slow or stop metastasis. They have a matter of fact approach whereas you have to live with the dread of the boogie man coming back all the time. Someone likened it to Post Traumatic Stress Disorder and along with the massive fatigue that can also bring is the constant worry that something is about to happen to you. On a tour of duty service personnel have huge amounts of stress for long periods - whether they'll take a bullet, an IED or die, every hour or every day for the whole tour of duty. In Cancer it is that every twinge, anything out of the ordinary any slight change is a return of the cancer. There is always the worry that it will come back and that it will come back and get you next time. Your brain doesn't help you with this, it just adds fuel to that particular line of thought and makes things worse unless you spend time equalising out and in almost a right hand, left hand brain way think through the whole thing.
It is funny that last week wasn't "The Black Dog" I described earlier or even its puppy :-) It was just an uneasy state of being "stuck in a rut" or if "I hadn't got cancer?" or perhaps a bit of the old self-pity or the down after the holiday and returning to work. Who knows. Cancer just amplifies this and I it plays on your own fears and it magnifies them.
It is a nice sunny day outside, as usual it looks as if I am the only one in the house and so I will set up outside with a radio (Test Match is on) and a shade and have a relaxing day.
I do have my health and I have family, job and yada yada so I ought to be thankful that I have those.
Saturday, August 08, 2009
Friday, August 07, 2009
Kind of dreading this time next week - I'll no doubt be stuck in Hospital overnight - I do hope though that this time it is in the Urology ward where they actually know how to look after you!
Work was a bit hectic. The Boss's one day back and everyone wanted a piece of him. I got in early but he is off for 3 weeks to Canada. I have my own worries with the pre-assess on Monday and the operation this time next week. I don't feel good about this one at all and I think that I've already touched on why that should be.
Anyway, at least I can look forward to a warm weekend so they say and perhaps we can get the barbecue out and we might even drag my screen and projector outside and have an open air movie of our holiday slides and videos :-)
Thursday, August 06, 2009
I got home a bit early and have set up the kitchen ready and am tracking the flight. Very much looking forward to seeing her as it has to be the longest time apart any of us have ever had.
Wednesday, August 05, 2009
I'm so proud/pleased etc. I just want to hear about everything she has done and to reinforce in her mind that she did this almost entirely herself - she raised almost every penny/cent and I am hoping that it will be a real life changing experience for her. We will have a big party tomorrow night and unfortunately I need to be in work the next day as it is the only day the boss is in!
I imagine she will sleep the whole of Friday anyway and so we can have a great family weekend and just listen to her adventures.
Feeling kind of maudling at the moment and just not my normal happy go lucky self. Sure it will change once all the crap is out of the way.
Guess what? My PC which was terminal I thought - is back with me and working. How cool is that? The PC man tested everything and it all worked, which is biz are as when I did that everything was dead. Anyway, glad to have that back and my car which cost a king's ransom to sort out this time. I suppose at 6 years old it needed all it brakes, tyres and bushes sorted. It is now looking like a real cat as it sits glistening on my driveway - Grrrrr!
Before BC I was on 4 times the money and every day was a challenge; I had responsibility and autonomy and status. Now I don't have any of those or, perhaps it is more accurate to say, I don't realise if I have any of those. I think I might have respect/status but the problem with taking a job lower down the food chain is that it doesn't push or challenge and it has now got to be routine - which I think is a better word than mundane. I easily exceed expectations as expectations are set for someone at the beginning of their career, not with a 1,000 year's knowledge and experience like me :-)
Getting up and going to work is mechanical and not exciting although I enjoy the people. It is funny that I'm feeling this at a time when, if everything is clear, I will be able to negotiate a permanent role. I suppose in this day and age having a permanent job can be looked on as a good thing.
Anyway, so I've pinned down one of my current issues. I know the other one is just reeling from having to go in for full biopsies again and realising that I will have to continue this sort of thing for whole of life, it isn't going away - or isn't likely to in the next several years.
Perhaps there is also the uncertainty about what they'll find - it has been 8 months since the last operation and I've had no maintenance since that time...
A combination of things then but it is all about coming back to the reality of what you have - a manageable acute disease that can recur when you least expect it.
Tuesday, August 04, 2009
Why not I thought put a few images up. this one is pretty damn spooky. In Copenhagen we looked over by a bridge and saw these statues staring out of the water at us. I hope you can see them - oh for a filter to be at hand but, of course, A has all my lenses and filters :-)
We are getting ready for L to return on Thursday night. My car got serviced today and at close to £1K for the work needed I might need to start thinking about my little luxury :-) however, Mrs. F. is going off to Heathrow on Thursday to pick her and her friend up so there will be a massive welcome home for her then. I have to go to work on Friday which is a nuisance but I reckon L will sleep for 24 hours anyway so we have the whole weekend.
I can't say that I am looking forward to the next few weeks. Perhaps it may be the last invasive work on me, perhaps it wont, we will have to wait and see the results.
there was a series of programmes on last night about Cancer - very interesting and I'm getting my head back around the fact that as ordinary as I appear and as much as I'd like this all to go away, it isn't going away and it will come back at decreasing frequencies (I hope) for the rest of my life.
You don't really understand that as you hope that you'll just get discharged and that will be it. It may be with some cancers but not, it seems, with bladder cancer at the level I had anyway.
I'll see if I lighten up a bit more tomorrow. At least it is Jazz night tomorrow and I will enjoy going to that and spending some time with my friends.
I'm neither one thing or the other at the moment and it isn't depression although it is close, it is perhaps coming back to normality and the day to day trudge of life. Things just go on much the same everyday and it would be nice for it to be different occasionally.
Monday, August 03, 2009
Interestingly enough, I just haven't convinced myself this time that this is necessary. I thought that the December Operation was it and that all would be over and every time something happened to me, I convinced myself that it would be the last time that I needed to have a cannula in my hand, go to theatre, wake up from a strange sleep, argue with the nurses about my inability to walk around a ward when I was connected to the bed and all the other "fun" things that happened to me last time. At each stage, it was my defence mechanism. This is the last time you'll need to do this or that I'd tell myself.
Obviously not then!
Oh well, I'm tired and I need to get some sleep. A has heard from L that she is alright and relaxing back in Buenos Aires ready to come home later this week. Goodness she has been away a whole month.
Talking to A tonight was interesting, it appears that she was one of only a very few who got Distinction in her exam. Some only got passes and there were very few merits awarded either. She really does work very hard and just looking at her notes and research you can see how much effort went into the project at the end. Good on her. It looks as if she has got her place secured and will travel up from here every day. Good on her I say.
Sunday, August 02, 2009
I'm just feeling a bit down at the moment as I know what is coming and I just need to get over this phase which looks at the downsides of what is coming. The upside should be that the results will prove where we go next. The positive side could be that this will be the last operation and that I'll go onto the challenging but probably better flexible cystoscopy...
In the overall scheme of things, I just have to go through this operation and then see what happens next. I forget, or I quickly forget, the fact that I have had a very serious condition and this is the territory. This is all for my own good but it still isn't great and it isn't something you'd choose to do.
So there you go - it is, I suppose, the shock of coming back off of holiday and finding the letter there telling you when you are going to get done.
I don't consider myself to be a hypochondriac but just recently I've been given to this train of thought. Of course it is now well over 3 years since the first operation and my goodness how time has flown and how things have progressed on since then. I had the funniest moment on the ship when someone mentioned getting off at Tallinn and visiting the cigar bar. I almost felt like going along and sitting there and lighting one up as if to defy the cancer gods and sneer at them. What a bizarre thought.
I do hope I snap out of my current malaise. I really don't care to want to go to work or do anything at the moment and when I'm like this I am at my most destructive as I don't tend to do what I'm good at and that is think logically and measure my thoughts and actions. I am likely to go and do something stupid like quit my job or bark at someone.
Off to bed now and hope to shake this apathy for tomorrow.
Saturday, August 01, 2009
Some of the dyed in the wool types who actually haven't been on any other holiday or with any other company thought this was a reasonable stance - we missing 25% of the ports we were expecting to see didn't. Some poor soul was actually due to get off at Gothenburg but ended up trapped on the ship like we were. Mind you at least they were compensated properly and were able to fly back there. We had hardly enough compensation to get us to the airport. I still await a response to my complaint that I made on board. However, given their inability to inform us of anything in a half decent manner I'm not holding my breath on that.
It makes it sound like a bad experience which it wasn't really but we were amazed that they were so unprepared for something that appears to happen quite regularly with P&O. It was that their customer service and communication stank. I thought their strap line "Everyday is different" was a load of bollocks especially when stuck on the ship for 2 days longer than you planned to be as everyday was "the same".
I can't say that I am particularly looking forward to getting back to work on Monday or to getting myself prepared for the next lot of biopsies given the awful experience I had last time. I think I'll make the point this time when I go and see the pre-assessment people.