Monday, January 26, 2009
My Yearly Planner
As treatment is on a Monday it usually takes Monday and Tuesday for me to recover properly. That means that a meeting on a Tuesday afternoon (and I have one of those) may well be a problem for me. I've asked a friend if he can cover for me.
It is surprising just how many things are happening this year and also how many are going to clash with Mondays and Tuesdays.
February looks busy as does May and as soon as I get back to work I have to do quite a bit of work to get things ready for major meetings coming up in April and June - it sounds a long way off but believe me - it soon rattles around.
I'm rocked back on my planning because I've got to go back onto maintenance and I haven't been thinking things through properly but in a way my cold and deafness hasn't allowed me to. Today seems a good day and I'm in a bit of a quandary as to what to do this year. I had great plans to get myself off and doing things and I find myself wanting to make plans but being reticent about doing so. It comes back to knowing when your treatments are going to happen and then when the operations will be and so on. I know I have 3 BCGs coming. In my view they could start next Monday or the Monday after.
Either way there are a series of issues with trying to plan anything although I know that they can move appointments just look at the routine operation I had before Christmas. - it is now over a month since I had that and I still feel like poo. In fact you could almost say it is 6 weeks due to the disruption of being cancelled. You know if you planned a holiday for a week after biopsies or something like that you wouldn't have confidence (now) that you'd enjoy yourself and to my mind, the major thing I need this year are breaks and holidays to recuperate a bit and recharge myself, I feel really run down and out of it. I need to build myself back up again so that the treatments and operations don't knock me about as much and so I can recover faster.
A new week and a better outlook
Interestingly enough, I can hear the fans on the PCs in my office today which I couldn't yesterday so a marked improvement. I hope it continues.
Sunday, January 25, 2009
Jeepers
Strewth.
As I head off into my 3rd week of deafness
Added to that my electronic equipment committing Harakiri and 2009 has gotten off to a start that I want to forget.
I am due out tomorrow on Escort Duty but I wont touch any beer or wine and will have to be very careful of what I eat as the Antibiotics are also ensuring that what little food I am eating doesn't hang around long!
I am keeping my spirits up though - not sure how I am doing that - and just working my way through it. I actually think that I am taking my own advice in saying it is no use rushing back to work if you are ill and it is no use worrying about it either. What will be will be and where I used to be upset about missing work or anything like that well - what is the worst that can happen? As I've said before "no one dies" so it is OK.
I think it is just so frustrating to be sat here, behind in my University work, repairing PCs when I could be doing something else and so on.
Tomorrow takes me in to week 3 and the last week of January. If I'm brutally honest, I can't see myself being ready to go back to work much before Thursday or Friday and that is if the whole of my body cooperates to let me.
Oh well, thank goodness for the blog to let off a bit of steam now and then.
The Big PC
That will take its toll of course especially as the fans drag in dust and muck. Anyway, Mrs. F Dashed down the road after I ordered online and we are almost back to normal. The file system took a bit of a bash by the looks of it and so I am doing some maintenance checks. It didn't help that I needed to do some messing around inside the box but we have now changed the office layout so that the PC sits higher up, the printers are facing the right way around and at least things look a little neater than they did.
It has blown away my chance of doing any University Assignment work today which is a real shame as I wanted to give a good day's effort. Tomorrow will have to do. I can't see myself recovered enough in the morning to go to work - in fact I can't see me being much better before mid to late week in reality.
My hearing, is in the upper ranges at the moment so a scream will really wake me up but any deep notes are still unheard. I tried some more nose blowing and the like but to no avail. I've dropped a note to the office to say I won't be in tomorrow. The rate things are going I wont get back until February and then just in time to start my treatments!
Once more into the hiss dear friends
I cannot believe the run of illness I am having at the moment. I thought I was reasonably fit and well before Christmas. This morning I still have the rather unpleasant side effects of the antibiotics, my stomach has been making bubbling and churning noises all night and even after some breakfast continues to do so. I feel weak, slightly dizzy (of course with my ear I would have that) and still have a blocked up nose and sinuses although they do seem to be clearing.
So - I'm once again drugged up to the eyeballs and hoping to be well again soon. It seems to be dragging on and on and it is another reason that I am probably not quite my 100% full-on cheerful, optimistic chappy.
I got a lovely letter from my Mum and Dad yesterday enclosing loads of jokes they had cut out of the paper and then, bless their cotton socks, they included a nice cheque so that the 4 of us can go out for a family meal as "we've had a bit of a rough month" so we can go and cheer ourselves up. That was a nice gesture. If anyone else would like to send me money........ :-)
Anyway, on that cheerful note, I now need to go and see what is wrong with my big PC and see if I can sort that out quickly.
Got it again
I've spent an hour or so downstairs and a few moments in the garden and seem to be OK now. I'm absolutely convinced it is to do with the ear problems and the remnants of the cold. I really could do with it being over and done with so I can get back to some level of normality.
I even had a slight attack in the Hospital that meant I had to go and stand outside for 5 minutes to clam down - luckily I was able to sit away from the crowds and enjoy some breeze from an open door - why on earth they keep hospitals at that heat I'll never know.
Anyway - I managed to get some of my University work done today and hope to have a dig at the rest tomorrow and next week. I realised too late that I should have done some more work on the bit I submitted. Hopefully it wont bring my mark down too far. I'm hovering at Merit/Distinction level but really want to be Distinction throughout if I can. Mind you given how I've been this last few weeks I'm surprised I can even concentrate on it.
So - off to bed and see how I get on.
Saturday, January 24, 2009
Do you ever get the feeling that
I got that tonight when I came to get onto my big PC - the one that acts as a server in the house. Dead - no lights on, not the fuse, probably (I hope) the power supply. Of course, could it go at a worse time? No of course not. I have a major mailing to do at the end of the week and bless it, it has just gone and died on me. Luckily I did buy a 1 TB back up drive and have recently backed up the whole thing - which will be useful if I have to do a re-build but I certainly hope it isn't that bad.
If it is just the power supply at least I can change that on Monday and get back to work. But to lose two PCs in a month is that hard luck or what? Crikey if 2009 carries on this way I may as well pack it all in :-)
I worked out that I will probably end up losing most of January's money but in addition, up to 50 days off of work this year, excluding holidays with treatment and hospital appointments. That's a good two months - say three months with January that I won't be billing for.
Oh well - no one died :-) And after all, its only money!!!
Pop, Pop, Click, Buzz, Pop, Squeak, Hiss
Luckily it isn't all back full on volume, I had that once and it was if every one and everything was SHOUTING at me. Going outside and hearing traffic was very frightening.
So that is something and I hope that over the weekend will gradually get better.
It's strange that I should be a little angry or perhaps resentful about having to do another year's worth of treatment. It shows you how your expectations change. I'll have to go back to having my original worst case scenario mindset when I go to see the Consultant. If I go back 30 months then would I have settled for it being 42 months to get better? Of course I would. In fact back in those days I expected that I wouldn't be discharged, if all went well, until I was in my 60s so I need to reset expectations.
I'm probably angry because, once again, I find I need to rely on other people and also that it limits what I want to do. I'm obviously finding "learning to live with it" a bit more difficult than I thought I would but then that because I didn't think I needed to anymore.
A lot of people were concerned that I was seriously depressed about things and I can see that from the tone of my e-mail to them- I used the word bad where perhaps not so good or some other words were more appropriate but at the end of the day I was probably angry and a bit depressed for a day but I have an underlying logical mind and when you look at what is actually presented and not forgetting that I am not an Oncologist or Urologist or a Doctor then it makes sense that to be absolutely sure then a course of maintenance is the best course.
I'll get over it. It looks like my retail therapy has just arrived at the door. I bought myself a six nations Rugby shirt so when I do go down the pub I can wear that.
I also feel the need for my Monty Python Tee Shirt to get an Airing. It has emblazoned my favourite phrase from when I was just diagnosed:
Friday, January 23, 2009
In The Breakers Yard of Dreams
Overhead the rain sodden clouds continue to pour their neck chilling rain onto the hellish scene and the darkness and howling wind chills my soul. A momentary upturn of my face into the teeth of the wind and rain and defiantly I cast my plans for 2009 onto the heap to await their turn to be compacted, fragmented and lost to the black hole where failed dreams lie forever.
Turning my back on the scene, the clouds part and the sun rises majestically over a pleasant green countryside, the breakers yard of dreams has disappeared and in its place are the sights, sounds and smells of a promising spring day. Life is returning, shoots on trees, plants emerging, warmth in the air and longer days strengthen me and I am free to dream and plan again. Life's good, life's OK, I choose to enjoy the day and dream again.
The Day After
I'm in a neutral mood this morning and I still can't quite believe that I've got to go through another two rounds of BCGs and Operations but I'm not anti doing it, I just know that they are out there waiting for me. It is the shock of thinking that it was the last of them and putting them behind you to then find them back on the agenda that is the shock. It is also that, I'd only recently come to terms with the fact that I hated these things and how unpleasant they were as I'd previously suppressed that. The last operation which, let's face it, should have been routine pretty much wrecked my Christmas and New Year and I'm sure that these colds, Flu and ear infection just followed up on how weak I was post op.
So - neutral about things which I sure will change the more I think about it. It is difficult to discuss things when you can't actually hear what people are saying and so after a short time I am sure that I will get a better attitude and be a little more positive than I presently am. I intend to go out with friends when I am better and talk it through with them as they always help me to see reason. At the moment I am in the denial and angry state and know that i shouldn't be but that is just the nature of how your mind works. I know I will change my mind and that it is good news - it just doesn't look that way to me yet.
I'll be watching my attitude change with interest in the coming weeks :-)
Thursday, January 22, 2009
Late evening reflection
We are both off on slightly different regimes now. I am off on some sort of maintenance gig and Steve will now repeat 3 BCGs and then get another Poke and Peek using a Flexible Cystoscopy and I will have 3 plus another 3 BCGs and get a Rigid Cystoscopy and biopsies - if they are clear I get a repeat performance of that. It seems over here in the UK that they favour full biopsies taken from all over the bladder and in the US they are happy to do a visual. The BCG immunotherapy regime is also different too.
The thing that brought me up suddenly was that I needed to go back on the BCG maintenance for a further year. It really is a belt and braces thing and I'm shocked a bit about that but at the same time, that is what the Consultant says ought to happen and if it increases my chances of staying clear and limiting recurrence then hey, I'm all for it.
I suppose it is difficult to communicate the disappointment to anyone unless you have to go through it or have gone through it but imagine, if you will, having it all explained to you that there isn't anything wrong with you, that they haven't actually detected anything wrong with you in 18 months but they are going to treat you as if you did have something wrong with - just in case.
You don't mess around (I would use a stronger adjective there in other circumstances) with Cancer. If they see it, they cut it out, if it can be annihilated with BCG, they do that. In Bladder Cancer country - it recurs with alarming regularity. It is treatable as you can see. If it is caught early and of the right grade you can be treated and cleared of it. So you can see that there is no other choice than but to go through it all again. It is tiresome, more than that it has continued to wreak havoc with my life in terms of tearing up schedules and making work and other thing unpredictable (Steve K is a Myers Brigg ISTJ I am an INTJ) we need to work in predictable, logical and structured ways as we are the planners and managers in the world. Want to upset me - take away my plans or disrupt how I have mapped things out and you'll do just that.
Today didn't go to plan - that was why I was off balance. Things didn't work out the way I had expected them to and what I had in mind for the rest of the year was torn up and lies in tatters around me.
Logically, I need to have the treatment and my work appears to be supportive about it. From expecting to have 2 days worth of Hospital appointments this year (2 flexi peek and pokes) plus a day for tests, I now have the prospect of 24 days worth of BCGs, 10 to 20 days for operations and "normal" recovery, 2 days for pre-assessments and 2 days for consultation off work. That could mean that this year I would end up taking almost 2 months off work and I've almost had the whole of this month off with the fallout of the last operation and the colds and infection that followed afterwards!
That is what I mean by affecting my year. I was planning on doing a lot of things that I couldn't do last year but dates of treatments and operations etc will now all need to be factored in so it makes for an uncertain life. I suppose I could refuse certain days or get the Hospital to avoid certain things but it all has to fit around my treatments and I don't know when they will start now and hence what the knock on is going to be. I've accepted certain appointments now that will probably have to be cancelled too. It is just the fact that you can't plan and that your time is fragmented and a BCG treatment over three weeks seriously messes things up. For example it takes two days out of each week for three weeks. Generally they are Mondays and Tuesdays and sometime, if you are feeling bad a Wednesday too. Travelling isn't easy straight afterwards and you need to time and plan getting to and from work carefully.
Additionally, after 12 weeks you are meant to have your biopsies and yet it can be 10 or 14 weeks it depends on their timetable.
So - that is really what tends to mess up people like me who are planners - it becomes uncertain and the side effects are uncertain and trying to organise anything is a bit of a hit and miss affair. Having always been one for keeping appointments and keeping to time, having milestone dates and targets and hitting them to suddenly not meet those dates and to have this much uncertainty and doubt is difficult to contend with. If I were totally disorganised it would all be so much better as it would appear normal.
I've done enough reflecting for one night and had quite enough of today. It is one of those days where you just can't quite believe what has happened to you. tomorrow, in the light, it may all appear so much clearer.
Oh dear, how sad, NEVER MIND!!
Never mind indeed. Third time cancer free, 18 months without recurrence and that is what I have to remember. The BCGs are tolerable, the operations really aren't good - especially after the last one - perhaps I need to make a fuss about it when I go for pre-assessment this time and see if I can get some sort of dispensation on what they normally do to me.
It's a pernicious disease eating at your body and at your mind and yet I don't have it. I haven't got it, I'm free of cancer and have been for ages. My mind is thinking that there is some sort of set back here or retrograde step and that isn't true. Sure it may not be that you just get scoped once every 3 or 6 months - this way they actually do cytology on you - full biopsies, belt and braces. BCG even though there isn't CIS, TCC or anything else in your bladder.
It is all about preventative maintenance and not about cure. We've done cure, we've had the heavy TURBT and Re-Turbt, the initial BCGs that removed the last traces of the cancer. It is all moving in the right direction. It just isn't moving as fast as I wanted and it was a big surprise that another year's worth of treatment was required. A big surprise.
At least I'll have something to moan and whinge about for the next year then :-)
Yes I know - honestly I do - I've just got to get over it and work out what to do this coming year and re-plan yet again.
Mixed Emotions
I really not sure what to do. I should be delighted in a way that I am cancer free, have no pre-cancerous cells at all and everything is great and looks fine and "you're doing well and it is a great step forward".
But - there were atypical cells in there. So to be absolutely sure, I'm back on maintenance - not sure exactly but I heard it as 3 BCGs every 3 months with Rigid Cystoscopies at 6 months and 12 months (deep joy!). I'll find out very soon - I expect that I'll commence in February - it might be 3 BCG followed by 9 week then another 3, 12 weeks later rigid cysto.
So I don't know how I am at the moment. I'm a little bit shocked to tell the truth - I thought that I was out of the woods, off the Roller Coaster and on for a life time of observation. As it is, I've another year added to my sentence.
I know I'll feel differently about this later - it is a bit of a downer but it really isn't - it will teach me for being optimistic though :-)
Oh well, life goes on..
Dawn - Judgement Day
My hearing has improved a little bit. I can certainly hear a little bit from one ear now and a lot more out of the good one. I'll make sure they are aware at the Hospital that they may need to SHOUT at me.
I noted that I had 6 procedures and 24 BCGs in 30 months. So that is something every month for that time if you look at it that way.
In a little over an hour and a half I'll get going off to the Hospital. I was going to take my laptop in to the local PC man on the way to see if they could rescue any of the data but as I can hardly hear myself talking felt it may be difficult to explain what I had done and what I want them to do. Being in the business I don't want them to spend inordinate efforts redoing what I have already done and I also need to set the scene about what I need rescued as most is backed up except a couple of spreadsheets that are pretty important and I hadn't backed them up for a couple of months. If it can't be recovered then it is annoying and means more effort on my part to be creative especially as they were accounts :-)
I've go my list of medication, my questions and I can't really take down a book or music as I need to concentrate on what people are saying so I know when it is "my turn" because of this muffled deafness.
So here I am after a 30 month Roller Coaster Ride wondering whether as it pulls into the terminus this time it will actually stop and let me off? If it does, I can go on one of the lesser rides (please not "It's a Small World")....
More later I'm sure, for the moment I'm looking forward to seeing my Consultant and hearing what the results are and what is going to happen next.
Wednesday, January 21, 2009
Don't think too hard about it
I am going to try not to think too much about anything tonight and let it wash over me a bit. Tomorrow - well it will bring what it brings and I hope for good things now. I've thrown off the think of the worst thing and you wont be disappointed to actually daring to think it will be OK. I hope that I am right.
At the same time, I'm going to be thinking about Steve K over in the USA who will be having his Poke and Peek tomorrow. It is a slightly different protocol as he is having a flexible cystoscopy but nonetheless, it will be a big day as a good result is to go on to the next course of Immunotherapy. I'm praying that it will be the case.
I've just remembered, or should I say been reminded, what one of the side effects of antibiotics is. Not pleasant - not for publication. I sure hope they are doing their thing and tomorrow will see another improvement. I haven't had the worries about going to bed tonight. I think that things have just relieved enough - certainly the pressure is off my ear drum now that I can get to bed OK.
I hope sweet dreams to follow and a good day tomorrow. Night all...
Less than 24 hours to go
1 Visit to the Doctors
1 Flexible Cystoscopy & consultation/diagnosis
1 TURBT and biopsies
1 Intravenous Urogram (IVU) or intravenous Pyelogram (IVP)
1 Re-TURBT and Biopsies
6 BCGs
1 Rigid Cystoscopy
6 BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
7 Consultations + visits to GPs when required.
5 Pre-assessments
Of all the procedures, in three cases I was catheterised overnight or longer - the 2 TURBT for 2 nights and the last Rigid Cystoscopy overnight.
A total of 24 BCG, Immunotherapy Treatments - all full dose and each involves the insertion of a small catheter (no local anaesthetic) to instill the BCG and between 24 and 48 hours side effects. For 6 -8 hours after the procedure, the bathroom at home is treated as a hazardous area and is subjected to bleaching and cleaning procedures after passing the BCG out of your bladder.
Of the side effects I had the first few visits to the Hospital saw me get a nasty series of "heat" rashes from the beds and also that both operations and recoveries were on some of the hottest days of the year. The BCGs varied from nothing to complete agony and searing pain to Flu like symptoms, to bones aching and cramps, fevers and chills and anything in between. However, I was told it would be worse than that so in a way I felt that I'd got away mildly as many never go the full course!!
The Silver lining is that we caught my high blood pressure and I am on treatment for that which in a way, much as I hate drugs of any kind, means that I get checked regularly for that and continue to be monitored - which is no bad thing.
Diet - that has changed a bit but I was never one for fast food or anything other than reasonable balanced diet. I now err more towards vegetables and fruit but I'm not freaky about it but did get so at one point about 18 months ago. Other changes. I try every day to have a pro-biotic and prebiotic and use one of those yoghurt drinks. It helps your immune system and there are some reports that it assists during immunotherapy treatment and hence I started then and haven't stopped.
I've cut down on cholesterol but my score on the door was 4 for that a year ago and I guess it will be less this time.
I have done more exercise but haven't for a while mainly I didn't feel great after the last lot of BCG and set myself back after the previous operation and set myself off bleeding again! I will get back to exercising regularly. When I am not laid up as I am at the moment I walk about 3 miles a day to and from the stations at both ends of my journey.
The list above has been since July 2006 - so 30 months of this. That's an Operation every 5 months. A BCG treatment almost every month (24 of them).
It feels to me to have been full on and yet between each set of treatments was a 3month gap before the operation. During Maintenance you had 3 BCGs, followed by 9 weeks in between, then another 3 then the 3 month wait for the operation. It is strange though how it feels you are never free from it and it is great when you can forget it and distract yourself from it.
The amazing thing is that it isn't painful to have bladder cancer. What IS painful are the things they do to you. Painful and uncomfortable. In addition, there's the bit that "messes with your head". That isn't painful but it does contribute towards the way you feel and respond to cancer. If you have a broken leg - you can see it, it is in plaster or some sort of cast, you hobble around on crutches, they take the cast off, you can walk and after a while you forget about it. Your mind doesn't keep wondering if the break in your leg is going to spread across your body or that it is going to get worse, or that they will have to cut your leg off or build you a new leg. In a way that is the added ingredient you don't get with common ailments that you get with cancer.
So - where is all this leading? Well just a retrospective of how I got from there to here and what tomorrow means. I'm hoping it means no more of the above although I imagine it means flexible cystoscopies for a long period to come to follow up and make sure all is OK.
But here is the rub. I should be clear. If I am, I would have been clear officially since November 2007. Yes, 14 months. Unofficially, I would have been clear for almost 18 months. In Bladder Cancer terms, the longer you are clear, the less chance of a recurrence there is. But - and here is the sobering bit - it can recur, it can recur many years later and even though statically I'm on the good side of those stats - age and effectiveness of treatment and recurrence, I did have a high grade tumour in the first place. A clear tomorrow is a major step forward but I still live with the knowledge that I'll need long term observation and follow up and may not be out of it yet!
That's a bit better
Well this time tomorrow I will be waiting to for my appointment and hoping that I hear (no pun intended) good news. If I do, I wont be able to go and immediately celebrate but will have to store that up for after this course of antibiotics are over.
I have no doubt that the outcome of that will allow me to move on and perhaps all these things in my head will stop spinning around and begin to form something cohesive?
Tuesday, January 20, 2009
I had to hang around tonight as well
I'm off to bed now and see how these drugs take on my hearing problem. I could do with having some hearing on Thursday when I go to the Hospital for my appointment.
Somethings not published for the moment
In addition it went really deep into the dark side of my mind and what I'd felt over these past few years how the various stages of the disease and treatment, work and losing my job etc., and how each of these affected me.
I was having a very bad time last night - obviously! I just got fed up with being ill (all the time). I suppose I was pretty shook up and frightened too that I'd had the panic attack / claustrophobia - if you have never suffered from it, believe me it really shakes you up. It is like a sort of rising panic and you can't find your way out and that makes you really twitchy. Luckily I know myself what to do and got up and made the situation OK for myself but it did bring back bad feelings and memories. Getting out is always the thing I need to do. Wherever I am I know where the doors are located, the fire exits and so on. I had to get out of my bedroom as there was only one door and I opened the window but that wasn't enough and I had to get down stairs where there were more options. Spooky isn't it - but somehow there are three exits from the ground floor and that's OK!
Luckily it hasn't brought back the very dark and very nasty stuff of 18 months to 2 years ago. The "Dark Dog" stuff which was just horrible and - say it as it was - just downright depressing and black,terrible, frightening and a really nasty place to go.
So - in a way I'm glad I didn't inflict the big scary blog on you or go into some of the stuff I don't want to tell you about for the moment. I just reread it myself and can see why I didn't publish it.
I'm a bit stir crazy being trapped inside my head with this deafness - lord alone knows how Beethoven or anyone else must feel with it - mine is temporary but it must be terrible to live like this all the time.
You can see why some people liken cancer to post traumatic stress disorder when you get moments like this. As usual it rally helped to write it all down last night but exploring the emotions and the fears at such an intimate level may perhaps take me some time to do.
At least I feel a hell of a lot better tonight than I did last night. That was really scary...
That would make sense then
Very nice Doctor too. Took one look at my ears and was pleased that they were both clear of wax. Then said that my ear drum is bulging outwards - yes BULGING and red and that he had no doubt it was an ear infection and put me on very strong anti biotics. He reckons a week to get some sort of improvement. I have to keep up with all the other stuff I am doing, pain killers, anti inflammatory and nasal sprays, steam inhalation etc.
As Spike Milligan said "I told you I was Ill"
Blast - let's hope the drugs work - mind you antibiotics = no beer or alcohol either :-(
Off to the Doctors
I don't particularly like Doctors, Hospitals etc but I need to get this sorted out and over and done with. I cannot have another night like last night.
I eventually felt good enough to get to bed about 1:40 or so. At least that was a bonus - I was worried that I'd be up all night or need to go wandering the streets for an hour or two.
Let's see what happens later.
Oh Boy I didn't need that
Well tonight I got myself ready to go to bed and dosed myself up with Paracetamol and did the nasal spray and all of a sudden I was on edge and not feeling quite right. My head was pounding - or rather my ears were and for all the progress I thought I'd made today, it was back to the deafness and sound of my own heart beating out its rhythm. Then I felt hot and breathless and so opened a window, then went downstairs and turned the heating down. After a few moments I was getting quite edgy and decided that the best thing to do was to get up and go stand outside. It is freezing outside but that seemed to help to start off with. Mrs F. Seeing how bad I was helped and we have decided that If I am no better in the morning I am going to the doctors. I feel trapped inside my head. It is the deafness and constant pounding in my ears.
Anyway, I have been in and out of the garden and watched some TV - not that I can hear much and just whacked some more nasal spray into my system. I feel a lot better now - I may even be able to go back to bed without feeling hemmed in.
I normally manage to contain my claustrophobia, its OK as long as I manage it. I can manage trains - I can always get off and wait for the next one. I can always sit without my heavy jacket on etc. I cannot stand the underground and avoid that like the plague.
I firmly believe that I've had so much self-confidence knocked out of me these past few years what with BC itself and the roller coaster you are on and with the job front that it is almost inevitable that you are going to get some sort of issues like this. The mind is a different thing altogether and who knows what things it cooks up.
Most people who know me would say that I am pretty confident sort of person, very much single minded and a bit entrenched even. A very few who know me are acutely aware of my reticence to get on the underground and I'm actually OK if I am on there with someone else because I can distract myself. Few I think would expect me to be quite as bad as I was tonight and last week. The rising panic of last week feeling that I couldn't breathe properly and tonight's little episode show how bad the disorientation is with this deafness. I heard myself saying "Will I ever be well again?" and that isn't like me at all.
Anyway, at least I have got over the panic bit and the temperature feels as if it has gone down to an acceptable level. I am breathing easily and feel much calmer now.
I remember getting into a state when I first came back from the doctors having been to talk to him about the early symptoms of my Bladder Cancer. That was just plain upset and angry and tired and distraught. It is very different to this dread feeling I got tonight very different indeed.
Thanks goodness for the blog, it takes many weights off of my mind and body.
Monday, January 19, 2009
Thursday - Not thinking about it too much
It is a massively important meeting because it may well mean the end to having to be taken into Hospital and having General Anaesthetic and Rigid Cystoscopies. It will mean having local procedures and a flexible cystoscopy - nothing to be sneezed at but perhaps better than ending up (like this time) knocked about for 4 weeks or more. The other thing is no more BCG Immunotherapy treatments. Will I miss them? Yea for about 30 Milli seconds.....
I'll have to wait and see what Thursday brings of course but I'm not really thinking too much about it. I'm really hoping to shake off this damn cold and get my hearing back which would be a start!
Whoa - even heard the morning alarm
I can hear muffled sounds from the good ear and I can hear high pitched sounds from the bad ear so all in all I am probably beginning to get to a point where the congestion will be cleared and I can hear again.
I feel pretty weak though I was surprised about that. I have informed work that I probably wont be there for the start of the week. If I am realistic, I doubt they'd see me much before next week the way things are going. It seems to be taking a long time to clear up.
Sunday, January 18, 2009
Longest I have ever been ill for
It is infuriating that I cannot get on. I do hope though that I might tackle the University stuff tomorrow and see if I can give that a go and get some work done there.
Some Improvement
I'll keep taking these decongestants. They do stir up your stomach a bit but at least things are getting better.
Saturday, January 17, 2009
It's life Jim - but not as we know it
Well the drops did their magic in a way - I am going to try another whack overnight. Certainly one ear is clearing up the other not quite yet but they are definitely doing something.
Let's see what overnight brings. Hopefully I can start to recuperate properly tomorrow?
Blimey these are the ticket
The trouble is that it has increased the tinnitus and drumming - hopefully just whilst it is clearing things out I hope. Will just have to go and sit down quietly whilst it does it.
I mean "No one's going to die!"
A bit like the old boy who was sat at the wrong place for a luncheon and quite indignantly came up and told me so.... He was all puffed up and red faced about it.
I just asked "Did it make you food taste any different?" he said "No"
Case Dismissed!
Nobody died or was about to. How important can it have been? :-)
I like the insight you get with BC but not everyone gets my sense of proportion or humour for that matter.
Small signs of recovery
I'll see what today brings. If I can get somewhere with clearing this up then I can work out getting fit, getting back to work etc.
Friday, January 16, 2009
Rationalising what I said Yesterday
I have to come to terms with no longer "being the boss", no longer doing my own thing whenever I want to do it and in some ways no longer having the rank, position, money, kudos and ego that went with the old me. If you know me, you will gather this is a massive shift if I can actually achieve it.
The "pressure" I 'think' is there probably isn't at all anymore, I don't need to walk around like some coiled spring anymore and I don't need to set all these high goals. That is easier said than done. I've always been ambitious and always been involved in high profile major projects and so, going in to work and doing a 9 to 5 isn't me at all.
AND YET it has to be in a way. Why get a second chance and let it slip? Why go back onto the treadmill of working my butt off and work away from home for months on end. Sure, 4 or 5 times the money I am on now is a good incentive but now there ARE more important things in life than money and perhaps savouring what time my Consultant and her team have managed to buy for me is a better prospect than spending that time working for some Corporate who wouldn't know talent and good value if you branded it on to their arm.
So I was working out what DO I need to do this year?
- Make the most of being better, exercise, lose weight, improve my health and live well
- Go to work, sort out whether a contract or permanent position don't overdo it
- University Stuff - Make time and do it
- Lodge and all that - giving most of it up this year so pressure coming off
- Other Business Interests - put in some time and keep the balls in the air
- Pay attention to family a bit more now you can
So that's my list - not much at all is it? How can there be so much rattling around in my head about what I need to do and when etc. It is all "in your head Mr Tweedy" (Chicken Run). So I just have to work on clearing it out of my head and it is gradually coming together. I certainly don't see this mountainous obstacle I saw two or three weeks ago.
I won't be able to change overnight but I can make a start by clearing out the times I have here and dumping the baggage of the past etc. Still not sure how I will battle the work gremlin who tells me I should be working elsewhere but I think I can sort this out somehow - I may just need to be creative and hope that the employer's can also be creative and flexible as the last thing we both want is for my creativity to be lost in the process.
I just hope that I can keep remembering to keep focused on the "few" things I have to work at. It isn't much, there is no need to worry about the scale of these things either. It will be interesting seeing how I cope with this "simpler life" I cannot imagine it will be easy for me but - as a good friend often tells me "you've done your bit - you may as well have a rest".
There is more of this to run - I'll try and revisit it as I work at it.
Productive but quiet day
I can hear occasional sounds and clicks but need to let nature take its course. It is massively frustrating of course. I was due to go to my Family History AGM but really don't feel up to it. Driving without hearing would worry me and I won't hear the lectures or anything else anyone has to say anyway.
I managed to get a fair amount done though today and a lot of preparation work is now completed. If I can just get a good run at it this weekend perhaps I can get back on track and get my Uni work in as well.
I haven't worked out what to do about work yet. I can't go back like this as I'd be a danger to myself as well as everyone else. I can't hear a phone, a fire alarm etc.
At least I can still work a bit from home which is useful. I've actually put up my year wall planner and started to make notes on that about what I am up to this year and all of a sudden, I've got lots of things to do and places to go. Excellent. All the F1 Grand Prix are already marked on, plus all my Lodge meetings as well as some of the visiting I am doing. All in all it looks good so far.
I'll see if I can run the momentum through the weekend.
No - still deaf
I'll be trying to do some more vapour breathing again today to see if I can unclog things. It is beginning to wear a bit thin after a week of this.
Thursday, January 15, 2009
Steam it out
Off to bed early to see if I can shake it off finally and try and get back to normal and then back to work and so on.
What a nightmare. Trying to talk to people is a laugh as I can barely hear what they are saying except when on the telephone. Oh well. Let's see if this works.
Back under control
I keep thinking to myself "what else are you doing that takes up your time" and in reality I couldn't tell you. I just seem to fill the available time with doing things. All effort and no achievement as my boss used to tell me many years ago.
Maybe I just need to hear those words next Thursday? Maybe that is it. Am I putting everything on hold awaiting the outcome and then the next steps? The "missing something" is still there and needs to disappear. Not sure what it is that is missing as of yet, I am guessing that it will crystallise next Thursday or soon afterwards. Could be a spiritual thing, could be a work thing, could be a personal thing, I don't know.
I shouldn't have a worry in the world really should I? What have I got to worry about? Work? I haven't been there since mid December and yet the office still runs without me and things are still getting done. What does that say about my job? Leisure stuff - I can have as much as I want, there is no stress. My friends are all under stress with the recession, where the next order is coming from etc. I don't have any of that. I'm giving up a number of my key jobs in Freemasonry this year. Again, nothing to worry about there. A few more meetings and I retire.
It is as if I don't actually want to put down any roots or make any firm commitments or decide on anything because there is still that little nagging doubt in my head. If it is gone by this time next week (and I do hope it is) perhaps I can get on and release a bit, I'm the only person holding me back.
I'm often my own worst enemy.
Well that's a small step for me
Ho hum, at least some improvement though which I will take. I was getting to the point of wondering whether I'd ever be well again the way it was going.
I am however, going to spend as long as is necessary making sure I AM well before returning to work this time. I have ever expectation that the last 4 weeks have knocked the stuffing out of me.
Wednesday, January 14, 2009
Thump, thump, thump, thump, whine
The head over a bowl of hot water and Vicks Vapour rub didn't quite do it but it brought back old memories of the bronchial tube thing I used to have when I was a kid. It looked like a tea pot that had been pulled up in the middle and the centre bit had a large cork with a plastic mouthpiece on it. You drew breath in through your mouth inhaling steam and this sort of bronchial mixture which had been mixed with the hot water. the outlet/spout was actually an inlet to bring air in to mix with the steam. It was different if you used a bowl as you just stuck a towel over your head and breathed over the bowl but kept your eyes shut as the fumes made the edge of your eyes water.
I haven't used any of these for 45 years or more!!! And where on earth the memory of that evil bit of porcelain came from I'll never know :-)
At least today I was able to do some work and get on with things. Not at a pace I was happy with but at least I could concentrate and there was no extraneous noise to distract me. In fact I got one important document out. Now if I can concentrate and get another finished tomorrow I might just be making some serious inroads into my pile of things to do. Hey there may be an upside to this cold after all.
Well I am going to try and lie down quietly and not wake the house again with this cough. It has the barking sound of a performing Circus Seal and even I can hear it over the deafness so it must be bad.
A good thing the Mayor didn't bring in
However, I don't think radical is needed. I shall try the old fashioned method of a bowl of hot water and some eucalyptus and see if the vapours sort it all out for me!
Here's hoping. It is beginning to drive me wild only listening to my heart and the "bells" :-)
A good Omen?
Guess what just arrived from my Consultant? An Appointment for next Thursday 22nd January 2009 at 11:15.
I hope that it is a happy circumstance and a good Omen that we are all being seen on or about the same time.
Fingers crossed for all of us.
Bad night
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
A moments rest, a sip of water, tickle in throat appears to have gone, lay down:
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
and
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
It wasn't getting any better I did the honey and lemon trick, lasted 5 minutes:
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
I took myself downstairs and after an hour all was under control. Mrs. F. appeared saying I should get back to bed but sit upright.
I did as commanded, climbed the stairs, set up pillows appropriately, slid into bed trying not to disturb. Huge involuntary gulp of air:
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
Cough, cough, cough, cough; cough, cough, cough, gasp, cough.
After 10 minutes of this I again took myself downstairs, double dosed on Honey and Lemon and Benylin and then after a while got it under control enough to realise at 7 in the morning I was being awaken by Mrs. F. who suggested I go up to bed. Pretty good advice, my feet were like blocks of ice and my neck was a bit stiff. I had three hours or so in bed, had a shower, have dosed myself up with various drugs again and will see how today goes.
I'm still very deaf indeed. All I can hear is my heartbeat and high pitched whistle in one ear.
Let's hope that I have broken the back of this cold today - I could do without another night like that or Friday night....
Tuesday, January 13, 2009
All making fun of me :-)
I hope it gets better tomorrow
What to do next
I just hope that I can get rid of this quickly and get back into rebuild mode :-) Things like this, I find, never come at a good time. Of course, is there "ever" a good time??
Hello World
The whole street can hear my TV - sure of it. I have been cheering myself up with the Monty Python TV series DVDs I got for Christmas, watching the odd episode when I emerge for my hour out of the bed. Subtitles on so I can get the gist of the noise.
I'm a little disappointed not to have my results yesterday but then again, I wouldn't have been able to hear what was being said to me and I could have infected the Hospital or got something on top of this. Will just have to wait. I'm sure if it was something worrisome I'd have been informed some other way. Although, my Appointment yesterday was in the Urology Nurse's area which would have been interesting - the site of my BCG instillations!
I am going to venture downstairs now and have a little food and see how I get on with things today. The head cold seems to have gone, the sore throat is less, the cough is worse and the ears are the same as they were.
When you feel this bad, my advice is not to go near a Vet!
Monday, January 12, 2009
24 Hours later
So I didn't go to the Hospital and didn't get my results and they will reschedule my appointment. I'm a tiny bit disappointed but I knew I was going out on a limb for Saturday. I think it was a good day out, a good meeting and that the members and visitors all seemed to enjoy themselves.
I'm paying the price for it now.
Sunday, January 11, 2009
Surfaced for a few minutes
It looks as if, if I can't shake this, I won't be going to the Hospital tomorrow for my appointment. It would be churlish for me to take this into the Hospital or for me to pick up something whilst I am still so ill.
I've just had a bowl of soup and will take my self back to bed again to see if I can shake this off.
Saturday, January 10, 2009
Its over
It appears you get to 50 years old and your body just goes into revolt and body melt down! At least things are better than yesterday and I have had a couple of beers this evening - spaced out as I knew I had my paracetamol and ibuprofen as well earlier and really shouldn't be mixing it up but, hey ho, if I sleep tonight, perhaps I'll feel better in the morning.
It seemed to go very well but I was very concerned that is was a one sided things as I appeared to be doing just about everything. Someone whacked me with a chair accidentally and my foot feels really sore and badly bruised.
It is enough to induce paranoia.
Anyway, much happier than I was last night. Feel a long night coming on though but hope that everything settles down. Lots of decisions to be made and things to consider.
Here Goes
It isn't every year you get to dedicate a banner - the last time was in 1936 and so working on that it would be about 70 years away!!! So I don't want to miss it.
Off in 40 minutes and go and get the place ready. It gives me 3 hours to sort it out.
It got worse
I can now hear in both ears my heart beat but at least the high pitched screeching that was going on had stopped. After an hour of agony, I managed to get everything under control, including myself, with some deep breathing and some calm thoughts. Then it really got nasty about 2 pm and luckily Mrs. F. said to try some Nurofen. I didn't want to take anything having had 4 - the maximum number of cold sachets the day before.
Anyway, a heat pack on my ear and neck and 2 Ibuprofen sorted things out and I eventually got some fitful sleep. I got up at 09:30 and had some toast, I have decided to do the Paracetamol and Ibuprofen mixture to see if I can sort this out. I believe (bit of late night research) that the decongestion sachets actually block the tubes up to your ear. If that is so, no wonder I have had problems - I always do.
So I have just taken a phone call about this afternoon and I do hope that I will b in a fit state to go. I was worried last night as I thought it might have been an ear infection yet I think it must be some sort of congestion related thing as there is no dizziness etc.
Someone said "you're going through the wars at the moment". He isn't wrong there. It's like Arnie has come back and given me "Payback".
"I'll be back!"
Started off OK
I've got the hot flushes coming again now, I will go back downstairs where it is cooler for a while and see if I can relief the pressure.
I haven't felt like this for so long and it really isn't at all pleasant. I know that some of it is nerves for tomorrow but not much. I just need to go and get comfortable and try and get some rest. The trouble with this is the more that you worry about it the worse it gets.
Friday, January 09, 2009
That's Nice
What a nuisance, the pressure behind my ear is making it difficult to hear anything at all. I feel like a total wreck at the moment. I can hardly believe that I am like this. If anything I am worse now than I was at the start of the week :-) If I was a Horse, they'd have to shoot me!!
I've finished my preparation work for tomorrow now so I need to go and drug myself up and see if I can get rid of this cold as much as possible for tomorrow's meeting.
I hope all the effort will have been worthwhile. I am sure it will be.
Better but not much better
I've whacked some Vitamin C and I am having one of these Max Power Lemon Cold and Flu thingies with added honey. Sore Throat tablets and anything else to soothe my throat also being considered.
Another scab and bits came out this morning, this time more reasonably pea sized like normal.
Today, I'm on tenterhooks awaiting deliveries of toner for my laser printer, binding equipment for my brochures and working out all the other logistics for tomorrow. I'll need to ask the lads to move chairs and things around tomorrow (I must remember not to do that myself).
Damn I feel knocked out and just not right at all. I'm sure it will all be fine tomorrow, it always is, but I could have done without the added problems too.
Thursday, January 08, 2009
OMG Ooooooooo YUK!
About 45 minutes later I went and I kid you not, the scab must have been the size of Wembley Stadium. Oh alright then, a bit smaller than that about the size of a 10p piece (size of a Dollar US) I'm guessing, no more blood but hell, if they cut bits that large into me no wonder I feel beaten up.
I've been on the drugs all day for colds and Flu and back into a warm bed in a moment to see if I can sweat the rest out. Sore throat, sneezes and coughs - I'm being paid back for the past couple of years of being cold free I guess :-)
I can't believe this - I'm so unfit at the moment.
Everything I've touched today has turned to poo
I then found that my Laptop hard drive (I bought a new one for it) isn't compatible and then I knocked my coffee all over my desk and the floor of my office!!
On top of that I sent a note quitting the University Course I was doing as there was no way I was going to manage to finish that with all the impromptu stuff going on as well.
I'm just mighty hacked off with everything at the moment.
What else could possibly go wrong
I'm feeling - well, to put not so fine a turn on it - sweaty - I've been sweating this cold/Flu, whatever, out these past few nights and I am now also steaming away inside my jumper and tee shirt. Hopefully I'll get rid of the damn cold thing as I want to be fit for this weekend.
Wednesday, January 07, 2009
End of a Day I'd rather forget
I need to see where I am with things tomorrow morning if I can realistically get my work done by Friday night I will try but I am losing hope of ever catching up now. There is just so much to do that I am not certain I can fit it all in.
I also need to work out what I am going to say in my talk on Saturday night - I haven't even written that yet!! I need to have a flexible talk to do anything from 5 to 15 minutes. It is all again a bit of a rush and didn't need to be as I was going to do this last May and didn't actually do it until last week!!
Back to clear again
I have dosed myself up with cold and flu remedies and will be taking it very easy again tonight. I was going to go off to the Jazz night but couldn't face the cold or the possibility of making this cold any worse than it already is.
I've managed to finish off most of the brochures for the weekend. I am getting a final proof read done and can then assemble them.
Nothing like
I'm guessing all this coughing and racking my body has dislodged one of the scabs. It wasn't just a scab it was a full on flow for a short while and then afterwards went clear.
Shudder!!! It brings back many worrying memories but I'm certain this is OK and it just means all the scabs are coming away now. I just need to make sure I don't do anything silly whilst that happens.
What on earth was that?
I was really surprised to find that when I got home, I sat down and went into a Flu like series of shivering, hot and cold, headache, legs like lead, sore throat. Where on earth did that come from. I've dosed myself up with drugs and gone to bed and sweated most of it out during a very uncomfortable night's sleep. I still have some of the symptoms in a minor way but it did take me by surprise.
I was going to venture out tonight but it is so cold and I don't want this cold to get worse. What a nuisance.
I think I have also resigned myself to having to give up my course. I just don't have the time to catch up and I haven't been able to give it the concentration and attention that I should do. I will discuss that later this afternoon and probably give that up. It isn't what I wanted but I have been so low with this set of tests and over Christmas and the New Year that I would need to make a supreme effort to catch up and I just don't feel up to it.
Tuesday, January 06, 2009
Changed Date
New appointment is next Monday (will I ever get back to work?) late morning. So at least by this time next week I will know which way the land lies and what the next steps are going to be.
A bit of trepidation around that meeting but maybe I'll find out a bit more about what went on and of course, the answer to the most important question of all - is it clear?
Well you certainly got my attention
Monday, January 05, 2009
Ventured Out
I broke the back of one of the documents today and hope to complete the rest tomorrow. I still have lots of little bits to do but must get on with my course work as well. I feel that my time management skills really will come into play tomorrow! They need to.
Oh nuts
Damn. I'd better get my arse in gear for that.
On a brighter note, thank goodness I didn't go for today to have the Operation. Knowing what I know now I'd have been lucky to have made it for this weekend's big show. Mind you I might have got my assignment done on time.
No need to panic quite yet - tomorrow morning will do for that :-)
In a Way
I just hope that I can get fit quickly enough to get back to work and to get Saturday out of the way. Also that I can sit at my desk for a little longer than I can now. I can do about 1 1/2 hours at a time now but even then that is pushing it.
Sunday, January 04, 2009
Getting Somewhere Now
I also need to do another booklet which is far easier as it is an A4 folded in half, again about 100 of those.
So I'm pleased with the progress and it has been good to sit down and concentrate on just getting this sorted out.
I've passed a few more scabs and bits tonight and so at least the inside of my much beaten up bladder must be getting better and back to what it considers to be normal.
I am beginning to feel better and hope that a few more days convalescing will have me sorted out and to get me back to some semblance of normality.
Better but some pay back
At least today I have made a decision not to go to work tomorrow and I feel for the rest of the week. If I am honest with myself, I am not up to it and I'd rather sort this out now than go to work and set myself back as I have managed to do in the past.
I've got so much of a backlog of work built up that I must tackle this starting today and somehow I need to work out a way of getting it all done by the end of the week. I like a challenge - obviously...
Saturday, January 03, 2009
Living Beyond Cancer
About Time Too
http://news.bbc.co.uk/1/hi/health/7752247.stm
Rip Van Winkle
It is a friend's 50th party today so I was left to cook some of the cocktail sausages this morning. That surprisingly easy task has left me tired too. What a wimp :-)
At least I don't have all the heavy headed cold symptoms anymore to contend with. Mind you, can I cope with a night out again?
I'm also seriously toying with not going back to work on Monday - I really cannot see myself being ready for that by then. I cannot sit at my desk for longer than about an hour at the moment - what chance of a full day at work?
What the hell did they do to me?
But hey guys, I shouldn't be feeling this beaten up almost 2 weeks on? Whether they cut deep, bent me into shapes that aren't normal, strapped me upside down or whacked me with a massive General Anaesthetic only they will ever know I suppose.
I can't believe how lethargic I am, how weak and just washed out.
There is another explanation someone floated. It's like the end of a long race, like a Marathon and you've crossed the line and now you are exhausted and catching your breath. That is another explanation that is plausible. I can see that when you get to the end (or supposed end) of something like this you let your guard down and succumb to fatigue or something like it. It's almost like that - utterly knackered :-)
Anyway - I look back to my last few weeks of posts and find that I am bleating on about how rubbish I feel but other people are far worse off than me. I need to get a grip on this - I'm beginning to turn into a whinger and I don't like that.
Friday, January 02, 2009
Doesn't seem to be getting any more predictable
I got my letter from the Hospital today as well. Now here is an even more bizarre thing. I was told that they'd see me in 2 weeks or so given the holidays, so Mid January. Now the 19th February 2009 isn't mid January - in fact it is almost 2 months from when I was discharged. So I've written an e-mail to the Hospital just checking out whether they really meant that or whether they meant the 19th January. It can be read in a good way if it is the 19th February if you think about it. So I'll see what they come back with.
In the meantime I am trying to get myself motivated to get going today and once again I find that I really don't feel up to it.
Hey ho... Maybe later - I work better under pressure :-)
Thursday, January 01, 2009
Curiouser and curiouser cried Alice
But what is very strange indeed is that now, I feel fine, my head has cleared, I can breathe normally and I feel much lighter and ready to go and do something tomorrow. How quickly things swing around. It is a bit strange this coming and going of symptoms.
I'll see how I am tomorrow - I do hope that I'll be able to crack on and do some work.
Strange
It felt like a small bit of Flu but I reckon my immune system beat it overnight. The problem is that it is another day that I haven't been able to do anything constructive. I've the odd cough and I feel a bit weak - I certainly don't feel up to getting on with some brain work - I can't concentrate long enough. I am just sat here tired and whacked out.
Wednesday, December 31, 2008
Feel Like Poo
I wonder if my Immune system is fighting off a bout of Flu or a cold as it isn't coming out like a normal cold or Flu. Slight sore throat, slight cough and so on. Weird.
Tuesday, December 30, 2008
Things Have to Change
I'm surprised that things are similar to last year and in some way to the year before in terms of outlook and wanting to move on but being unable to decide what moving on actually means. Each year has seen great strides forward and as far as I know that remains true today, if the biopsies are clear then I have been clear for over one year and in reality more like 18 months as I didn't have cancerous cells in April 2007 either. This is a massive positive - I will wait until I am told officially but unofficially (and they haven't been wrong so far) an all clear does make a big difference going forward. Will it be enough to make or even know what changes I think I need to put in place? I suppose I'll need to tackle that in the New Year.
I've been thinking a lot about the next steps and there will be a blog about it when I have completed it. I find it the most difficult thing but perhaps it is the most important too.
For example I am trying to address:
- What do you do when you get your life back?
- Where do you go from here?
- How do you live with the uncertainty that it may come back and you'll have to go through it all again?
- Do you HAVE to make a difference or can you just go back to normal?
Juggling with the various scenarios "does my head in" and so I am spending a fair bit of time trying to rationalise it out. Everything is up for review and options need to be worked through - hence it will take me a while to work through it and eventually blog about it.
Feel worse today than yesterday
The time compacts up doesn't it? I have no idea how I am going to fit all this lot in properly in the next week and a half. I'm sure I'll manage it somehow - I always do.
Monday, December 29, 2008
Only hurts when I cough
I want to be fit and back to normal now but the reality is, it is taking much longer than I remember or want it to be. It sort of backs up my view that two things happened here. My Consultant told me this (if clear) would be the last lot of treatment and, as I understand it, it should be the last set of biopsies taken as an operation under a general anaesthetic. She also told me that in taking biopsies, they go deeper into the Bladder Wall to make sure that things are clear. If they have thought these are going to be the last then I'm sure that they would have gone deep and also there is a possibility there are more than the standard number done if the apprentice had a go and did a partial job.
So whatever it is I've got to get on with it and recover, it is just annoying that I am not quite as well as I want to be and that I just cannot get on with stuff that needs to be completed.
I have so much to do and it is frustrating to find myself unable to do it. I know that I should be happy enough that I'm in a position to moan about it!
Bad Day
I fancied going out tonight but in reality I don't want to be sitting on plastic seats or walking around much as I feel worse today than I have all week. How bizarre - all catching up on me no doubt and payback isn't comfortable at all.
I'm trying to get back up to speed with my studies and the work I was doing before last week. The trouble with that is I still cannot concentrate for long - I get sleepy too and so as much as I'd like to do a blitz and catch up, I am forced to do lots of small sprints to try and get things done.
BCG Tolerance
I reckoned that they were challenging and when I did get a bad one - it really was bad but that was early on when I hadn't worked out what to do. Stupid me was trying to carry on working afterwards and the next day when I should have been lying down. I didn't prepare properly and so on. Once I worked that out things got easier. To anyone who doesn't have to have these it is without doubt the most horrendous sounding treatment to have, especially how they deliver it into your bladder but, as much as you can get used to it, you come to accept it. It is, after all, saving your life and so if you look at things that way then you can deal with it.
It is a strange thing to say that it was OK for me and some people really suffer with it and take a lower dose. I've had 24 all full doses but I'm comparatively young as most people get BC when they are much older and cannot tolerate the sorts of treatments we are talking about here.
I'm just surprised that the Doctors are surprised about the way I tolerate it. I suppose they are told by many patients how bad it is.
I've kept detailed notes about the BCG treatments and the side effects and in a way looking back on them, the first two sets of treatments that were actually killing off the cancer were pretty rough and not nice but I honestly expected that I'd be lying in a heap for days, vomiting and not being able to eat and a pile of much worse stuff, I didn't expect that I'd even be able to walk properly or be up and about but I was OK after 24 hours generally. When I hear of how Chemo and Radio work I tend to think I got away lightly. But again, if you haven't "HAD" to go through it, it still seems terrible.
I think I need to think more about this to do the subject justice. It is, in my opinion, a balance between what is acceptable in terms of cure to you. The IVU X-Ray really made me feel very ill indeed and yet these BCGs made me feel bad for a short time but just look at the results.
1 Week On
I am definitely a lot more tender and can actually feel where they pulled me about. My stomach muscles and that whole area feel strained and tender. I'm not sure how much that is also me getting out and about and carrying on as normal as well of course but I think you tend to notice these things.
I've decided to see what I can do to get my computer sorted out today. I have set up my e-mail on another computer (I have - no sorry had 3 so 2 remain). I need to set up some of my other e-mail accounts and to do a review of what I think is missing. I do tend to back stuff up all over the place and to have files on more than one computer. I also tend to do 2 back ups of everything and so, in general terms I am OK but anything that I have done since the last back up will be lost for sure.
As usual there is the inconvenience of lost messages and files but all my photos and important stuff is always double backed up. I might take a friend's advice and do off line storage in the future.
Sunday, December 28, 2008
You tend to forget
Yes - you forget how knocked about you are until you start to get tired out and also how you sleep for longer and feel like sh1te. My throat is still a little sore and I am still making sure that I am drinking plenty of water. The problem with focusing on anything for a long period is also manifesting itself as I just cannot get the enthusiasm together to go and sort out my broken Laptop. I've tampered with it but it does look terminal to me as I cannot even get the hard drive to spin up!
Oh well - perhaps tomorrow and my head will be a bit clearer and I wont feel quite so exhausted.
Saturday, December 27, 2008
Tired
I'm doing OK with this ongoing stream of events. I find we have another one today to go to but that should be it until the 3rd January. At least I'll have an opportunity to sit down today and rest. I've been keeping going and awake somehow but when I do get home I crash out completely. I think we are out in the evening so at least I get most of the day to sort myself out.
When I reckoned that I couldn't see where they had shaved my leg, I now notice patches of hair gone from my left leg. This increases my assertion that someone other than my Consultant actually did the work on me as it has always been my right leg before. I also know that it was the same Theatre as all the rest I went to.
The back of my left hand is now beginning to ache and bruise up but everything else feels OK. My middle areas stomach, groin etc are tender but not sore - I know I've had something done to me but other than that it is OK.
The dreams appear to have subsided and the only really recognisable difference in me is an anger about the way they went about this at the Hospital. Not my Consultant's fault - just "the System" and the sheer number of sick people in Hospital at this time of year. I do hope that the results are such as to ensure that I no longer need to go in for this level of surgery again.
Friday, December 26, 2008
Not good
Oh well, it is a bit of a pain in the ass though as I just realised that I had put a list of people on it but can recover that from a friend.
Life without IT can be a challenge.
Wednesday, December 24, 2008
Merry Christmas
I am just waiting for everyone to come home and to start celebrations with my family, my neighbours and my friends. My Nephew has just arrived from Luxembourg and he has been cheering me up with his stories. Soon Mrs F and L will be here and we can start to celebrate and enjoy ourselves together. I can start to lubricate with beer - which is a bonus!
It is a time of celebration and happiness but also a time of reflection. This year I look back to some of my friends who will not be here at this time, who didn't make it and I will spare a moment for a few who face that very challenging journey soon. I hope that they will have time to find peace and solace and the courage to face their very difficult journey ahead. This Christmas for them I hope will be full of hope and laughter and joy and not one of fear or bad reflections.
This year has been a turning point in my fortunes both in my health, my career and personally and I will be thinking about how lucky I am to have such good friends (with their remarkable senses of humour) and so many people near and far interested in and rooting for me.
It makes me feel very special and very privileged and it demonstrates that in this world where there can be so many ills and terrors, disease and disasters there is an island of hope that is called humanity and the care for (and of) your fellow citizens. If nothing else that I take away from this year it is that charity, friendship, trust and honour are all things that set us apart from the rest and I hope that we continue to demonstrate that in 2009.
Thanks for all your kindnesses and good wishes, prayers, black humour, toilet humour, bringing me down a peg or two, building me up, helpful suggestions and ideas, silent strength and just for befriending me, I cannot even begin to tell you how much it has meant to me this year to have so many people rooting for me. I appreciate it SO much.
Have a great Christmas - mine starts in 5 minutes :-)