Sunday, July 31, 2011

Strange Day

A & L's boyfriends are around now and so we see a lot of them. Barbecue No 2 of the weekend but at least this time they didn't set up the Chimenea to billow smoke and ask out everywhere like they did yesterday!

F1 was good, then the Golf, the Swimming, the Athletics and the Cricket one after the other meant it was a good old day for sport. The girls have bought me some tickets to Brands Hatch to see some motor sport and I've chosen a weekend that suits me so now to see if everyone else can make it? I remember seeing my one and only F1 Grand Prix there years ago and before we had kids my mate was a Marshall so we got to see races and get a paddock pass through him and his girlfriend.

I'm trying to sort myself out for holidays and all that but mindful that I may need to go see my parents so I'll probably hold on for a while to see what is going on in the next few weeks in terms of diagnosis, prognosis etc.

It's never easy of course and Mrs. F. who has now changed jobs can get time off out of the school holidays which is great for us but we may have to consider doing late bookings if the news is not as good as everyone wants.

Dad's health

Seems to be better - losing his Jaundice and getting back to normal but has lost about a stone which is worrying even though he could "afford to lose that" and more - given what he has I'm a little more concerned about things. Mind you, no use second guessing these things and we will know soon enough what it is and what we can or can't do about it.

I guess all of this is taking my eye off of my situation and the reasons behind this blog which is about bladder cancer. Maybe I need to reconsider what goes in here - however, I'll keep it going for a while longer as I'm sure there's mileage to be had in it.

Saturday, July 30, 2011

What a week

I don't feel like it has been a week - so much has happened and yet time has shot by. It's half-way through Saturday and I'm feeling a bit bored - I want to come back in here and do some work but I know that isn't going to do me any good - I need to take some breaks from this.

I have to admit to being somewhat nonplussed by Mrs. F. who is now questioning where to put my new exercise machine. I guess it is going next to my orbital trainer as far as I'm concerned and it could go in my office - it would mean losing the drawing board and all the accumulated cr@p that has arrived on it these past few years but it could be done. However, I was asking as I thought perhaps I could set it up in the garage for the benefit of everyone and as it is on wheels I suppose it could go somewhere downstairs but I'd be less thrilled with that. I think I'll just put it where I was going to put it and say "sod you" to everyone else :-)


Friday, July 29, 2011

The Deed is Done

My Vibration Plate Exerciser is ordered and as luck would have it - the distributor is 10 minutes away from me. I was going to buy another one but as they couldn't furnish me with their terms and conditions I decided to do some further investigation and then found another one that is more powerful so I thought that might be worth having a go at as it has another level of programs, more speeds and looks a lot more sturdy.

Hopefully next week I can get going on that.

Thursday, July 28, 2011

Exercise - or rather the lack of it

Well - I'm going to have to change all of that later this week and into next week. I took a count of calories earlier this week and was amazed how much I eat and so in the past couple of days I've dropped the amount I eat significantly. Coupled with that I realised that my odd attempts to get back on the exercise habit have been abysmal and of course then I hurt my leg and my back and so I've only half heartedly messed around with the cross trainer.

Today I was reviewing some notes I'd made some time ago about getting a vibrating plate massage / trainer and spent some time reviewing models etc. I'd love to have the price of a small car and invest in a power plate (who wouldn't) but that would seem a bit churlish of me and so I've discussed a plan with Mrs. F. and I think - subject to discussion tomorrow - I will invest in a Vibration Plate. These machines set off vibrations - allegedly this technology was originally designed to treat bone and lean muscle mass loss in cosmonauts who had spent considerable time in a weightless environment in space, in addition to enhancing power and strength and accelerating recovery in Russian Olympic athletes.

I don't believe that you can just step on one of these and the weight drops off of you but the idea that you attempt to adjust lots of times (according to the frequency of the plate) your body and muscles it is meant to assist in toning up and I'm thinking that if I use this to warm up and cool down on then I can get onto the cross trainer in a better condition than I do now. For what it's worth - it may be a useful thing and I can do a number of short sessions a day on it as well apparently. That would be good to haul me off of the keyboard and to give myself maybe a 5 or 10 minute mini session three or four times a day. Worth a go and anything to get me back into the grove again. I find that I am working long hours and working into the evening and weekends again and I just need to reclaim some of that time back and do some exercise. It sucks, it's horrible, I don't like it but I must get my shape back and get myself fitter again.

Better

Everyone seems to be a bit better this morning - apparently no one gave Dad any advice about having the anaesthetic. So I've sent on some of my stuff about that. How can they do that?! Grrrr.

Anyway - he's better this morning - under instructions from us all to take it easy for the next few days or else :-) I think he's got the message - I've sort of dug into my experiences and told them what happened to me and so I think that might help.

Anyway - first round over and more to come. All seems to be OK for the moment and just need to wait and hear back about the next trip in a few weeks time I suppose.

Wednesday, July 27, 2011

Mmmmm

So Dad's home - no biopsy but a plastic stent (lasts about 3 months) not a stainless steel one. He managed to frighten the bejeebers out of everyone trying to get up to go to the toilet and staggering like a drunk around the ward as he was loaded up with General Anaesthetic! I suppose if you don't know, or no one told you, well you don't know. Then he wouldn't get into a wheelchair and frankly I'd have kept him in overnight but well they like to boot you out these days so he's at home and not listening to anyone about the General Anaesthetic but I'm guessing he'll go to bed and will sleep through and hopefully feel a bit better and not try and be a bloody superhero in the morning.

I've been there and done that, got the tee shirt and felt an arse doing it! So plastic stent - I guess because there are more MRI scans to go next week or the week after when he has to have an inside out type of scan. I imagine high magnetic field and metal don't exactly work together in harmony if my electrical engineering training is to be relied on.... Quite how my dad and my brother who are both also trained electricians didn't get that connection I don't know. Mind you I could be barking mad and have got that wrong - what do I know?

My mum sounded wiped out when I spoke to her so I'll ring tomorrow morning and see how she is coping. my brother and sister-in-law were both around today and are 5 minutes away. I thanked T for being there for them. There you go, I feel guilty and yet I didn't move away from them and - as I complained a week or two back - no one ever came down to see me when I was ill (not that there's a wrong or right about it - it's just a fact that's all and I'm not overly precious about it). I'm in two minds whether I'm needed or not at the moment. I could go up there and spend a few days but I'm wondering whether I'll be needed at the time of diagnosis to help to put things in perspective.

Dad's annoyed that he has to have more done to him but I suppose that's only natural - I was annoyed I had to go in last time but I realised the benefits of checking out the mark on my bladder whether or not it was made by them, was a scar or it may just have been a recurrence. I suppose he hasn't come to terms with all of this yet and I doubt I would have done either it's only been a few weeks and so rationalising your situation is pretty difficult and coming to terms with being that ill for the first time in your life isn't going to be easy either.

Dad's happy enough laughing and joking but I'm sure that it's defence mechanism clipping in. Underneath I can only imagine how this is churning away for him. Not a lot I can do apart from holding myself up as some sort of example and yet it took me a long time to deal with it all.

Let's see how everyone is in the morning...

Down to Theatre

Well Dad went down to theatre around 12:15 and so I should hear something soon. So this is what it feels like to have a close relative in hospital? I can't say I've ever experienced it as the receiver - I've always been the giver of such grief to my folks!

I have to say I've been feeling quite strange all day - my body is tense so it is a manifestation of stress mainly in my chest and shoulders and upper arms.

Spoke to my kid brother - bless him - he's doing all the running about on this and of course had his own problems with his mother-in-law dying yesterday.

Oh well - let's see what happens later. Fingers and everything else crossed :-)

Distracted and not a little anxious this morning

I had a terrible night's sleep - no major dreams or worries as far as I recall. With dad going in for his procedure today I do feel quite distracted and a little anxious - not that I can do anything for him of course.

Let's hope they are kind and helpful for him and get it over and done with as soon and as painlessly as possible so he can go home and relax. Of course he will have to wait for the results of the biopsy which will probably be just as traumatic.

Tuesday, July 26, 2011

Stated Far More Eloquently Than I Ever Could

This article in the Guardian

Having cancer is an education, and this is what I have learned - "Illness introduced me to a beautiful network of dependence – and a struggle for autonomy I can't win on my own" by Mike Marqusee

I'd like to be able to write like this but I'm not a journalist :-)

Thinking about dad tonight

I know pretty much what he is going through and he reckoned the last 4 days have been like 4 weeks - yes I recognise that too. Not a lot I can do to help really other than the supportive comments and the empathy.

It's pretty worrying I have to say all the waiting and thinking and Dad's got a razor of a mind, can knock out the Times or Telegraph Crossword in less than 10 minutes, can answer most of the questions on University Challenge etc., etc. So he has a pretty good idea what tomorrow is going to be like and I imagine is forming an opinion of what he has. Me too in a way although there are plenty of good signs here as he isn't hurting, off his food or losing weight. It's all too early to judge and it's all too early to say. I just hope that they get it over and done with for him tomorrow. He will be having an Endoscope which needs to get around to here to take a biopsy and to see if they can correct the blockage causing his Jaundice.

I feel for him and for the trauma and the anxiety he will be going through - I'm bad but under control after having seen more tubes and stuff stuck in me in the past 5 years than I care to remember - I am sure it will be very traumatic for him and for mum.

Just when you thought you'd had your fill of bad news

I got a call from my Mum saying that my brother's mother in law had died today. She had been suffering from metastasised cancer and last year called a halt to treatment - she had had enough of it - and I can fully understand how that would be. We all knew that this was likely and a week ago she stopped eating, went into hospital yesterday and died this morning. Poor old T, my brother, he's dealing with Mum and Dad and now this. The amazing thing is that the funeral could be tomorrow, they live in France - apparently that's normal! The father-in-law himself (I believe) a cancer survivor, will bring the ashes back to the UK. T and his wife can't drop everything and be over there and Dad is in hospital tomorrow morning and T is taking him.

I'm left here not being able to help out on this. Spoke to mum and this news isn't exactly helping matters of course. Dad also has to have a scan that looks outwards rather than one that is scanned inwards. This is pretty new I believe and let's hope that all these things will sort him out one way or the other. If nothing else tomorrow let's hope they open things up and get rid of the jaundice.

I kind of feel a little helpless being all these miles away but I remind myself that I've lived in this area almost all of my life and it was my parents and and brother who moved away from here. I suppose I ought to get my guilt trip over and done with quickly. If my parents had been living here and my brother elsewhere I would have been doing the driving and all that.

Monday, July 25, 2011

So 5 years + 1 day - how's that feel?

You know what - it feels just great and whilst I seem to always be bleating on about it - life's pretty good for me at the moment. It isn't great for other people but I suppose when I wasn't doing so well they were doing OK.

I feel for my parents at the moment, what they are going through and I hope that we will know for certain later on this week or next what is going on and what the future will hold. I'm not sure that me worrying about it or anything else is going to change for what will be will be in these things and I just hope that it doesn't involve too much discomfort for my dad.

Somehow I've resolved with myself just to pull back from it at the moment as I can't do anything and I can't change anything and I also need to not get myself all wound up either.

I decided today to monitor my intake of food as I know that FOCC is pretty fattening stuff - I thought that I was on quite a good diet but in reality with all the odds and ends I eat during the day I tipped 2000 calories for the day. Tomorrow I intend to reduce that by a good couple of hundred if possible although I may be out to lunch :-( which will skew that number.

Anyway - at least I can see where the numbers are and what I need to achieve in the next few weeks in terms of lowering my input and raising my output (exercise) to start to loose some more weight. It looks as if all the work I did do has recently just ground to a halt so a bit more attention to detail is required.

Itty Bitty Internet

It's been a bad start to the day - the internet has been appalling - it wasn't great last night either. They've acknowledged that and are trying to fix it and I've been trying to work in between times.

Funny old day so far - I don't feel very hungry today and so didn't have any breakfast today but will have FOCC at lunchtime. I'm not sure what it is but I just don't fancy eating anything this morning at all.

I had a strange nights sleep and got up a little later than I normally do and it's just all a bit strange this morning as if something has happened but I don't know what it is - if that makes sense?

I'm just going to work my way through and see how it goes.

Sunday, July 24, 2011

If looks could kill

I suggested that I enjoyed the time we spend together to Mrs. F. today - funny really as I did say it in a slightly sarcastic way. We were both out Friday she was out today and I hardly saw her at all on Saturday. This morning all hell broke loose with some garment needing repair before work as it was Ls last day it had to be sorted and so I guess I've seen Mrs. F. about 10 times this weekend and spoken to her about 3 times. I thought it was funny - Mrs. F. looked pretty much underwhelmed and if looks could kill :-)

So it's now late and I am going to turn in. I've come up with some great stuff for the business plan and had a weekend of sport to enjoy. Not great news about my dad but we will have to deal with that after Wednesday I suppose?

I've been wondering quite what to do about all this and suddenly, I'm backing away from wanting to actually "do" anything. What could I actually do? How "helpful" could I possibly be? I know a number of people who have cancer and they're not like me, they don't think or act like me and they get on with things differently - who am I to tell them what to do? I need to play it very much by ear and see what the diagnosis and prognosis is for dad and that won't be known for a week yet.

Alomst Missed it - FIVE YEARS TODAY

Five years ago today - around about 3 pm was when I had the first TURBT and had the tumour removed from my bladder. It was a Monday and I had spent the weekend in a state of heightened anxiety knowing that they were going to operate. Other than that I knew very little of my condition - I took a peek at some online stuff but didn't like the look of it and then realised that most of the people who wrote these things were in a far worse state than I was. A lot were dying or thought they were and it was not a great place to be.

Luckily - I'm not one of them and I survived that episode.

I have no particular plans to do anything - it was only that I wrote today's date on a piece of paper that I remembered.

To anyone tuning in at the beginning of their journey with bladder cancer - things do get better and time and experience change your perception.

Spoke to my Dad

This morning and it was one of those very rare times that I've heard him actually feel sorry for himself or say that he wasn't particularly well. He sounded weak and he sounded frail. He's sleeping a lot at the moment and is due in on Wednesday for his endoscope which we hope will sort out his jaundice if nothing else and take a biopsy. Now he's not hurting or in pain, not shaking or anything else and so in a way that's pretty good news - but we will have to wait and see.

He has some more scopes and things to go through and he's had a number of scans - he's had the dye in the veins one so I imagine he is feeling pretty awful - as I did when I had that. For a guy who hates the doctor and hospitals he's managing OK. He needs to get over the YUK factor and realise that everything happens at their own speed.

I said yesterday that I can't go with him on this - I can't live his pain for him because it hurts me just thinking about it. I feel like I've just had some of this stuff done to me, I feel the back of my hand hurting and knots in my stomach just thinking about it in passing and even now writing this. I really don't need to be giving myself this level of grief and thinking about that dye in the veins thing really gave me a turn - I hadn't realised he had had that. Then again - they didn't know about all the times I had my stuff - some but not all.

Anyway - Wednesday is the big day and with some luck we will know more towards the end of the week.

So here's Some Good News

I've been following a blog called the Assertive Cancer Patient for a couple of years on and off but in recent times have tried to follow it more often. Today there was some great news. How about after 10 years of having metastatic cancer - fighting all sorts of battles you wouldn't believe and having huge highs and lows, Jeanne is in remission HERE is the news.

There's something worth celebrating...


PS: I forgot to say - that last year she was given a year to live and then refused to do so - she has been on a clinical trial which appears to have assisted. Surely a lesson for us all not to give in lightly and to persevere even in the hardest of times.

Saturday, July 23, 2011

Holding back

On calling too often at the moment and will have 'normal' phone call with my Mum tomorrow morning. Will see what they've been up to and see what I can or cannot do at this time. I think that keeping things like they normally are is probably better than calling every day etc.

It's a bit strange dealing with someone in my family being ill - the last major illness before mine was my nephew and niece who both got Diabetes but hers was pretty serious as she almost died. That's got to be about 15 years ago now I suppose. Anyway, what I mean is my immediate family because I'm the sick one really. 11 Operations when I was a kid, rushed in sometime ago with possible heart attack (which proved not to be), a couple of A&Es when I got my nose broken in a cricket match (not by the ball but when the idiot let go of the bat!), once when I fell down some stairs and once when I got my lip split. And of course the 30 odd times I've been in and out in the past 5 years. So dealing with someone else being ill should be easy for me :-)

I doubt it will be. I'm 110 miles away and at least a 2 1/2 hour journey from them which makes for an interesting problem about going up to see them and when etc. So whatever happens in the next however long it is going to be isn't going to be particularly easy to sort out logistics wise - I just need to wait and see.

I also realise that I know a lot about my particular subject matter and I'm also not certain that I will actually be of any "help" at this time, time when they need to work out for themselves what they want to do and also time to get their thinking right about it too. I've got to tread a careful path between their needs and mine. No one got involved in my illness and so I need to make sure that I don't get involved in theirs. That's sounds a bit awful but all I mean is that as well intentioned as I may feel my help may be, it's not my place to do that uninvited and unwanted. I also have to be very careful about my own health in getting that involved.

On a happier note L arrived home after being away for a week and she had a good time away. She is growing up really fast - it's most strange that suddenly she isn't a school girl any more and she will soon go to University, she just appears to have grown from one to the other in a few weeks.

Friday, July 22, 2011

Impressed

With the level of professional results the three artists put on tonight and the evening shot past. Thanks to Flocky Bicep for turning up and supporting the evening. I think it was a great success and it's great to see young artists displaying challenging work. I was most impressed to see some of As larger photographic work and also some of her original life work in charcoal - I'd never seen these before.

It's a shame that we don't value art as much as we should. We came back home and ended up having a curry which went down very well. We also have a few bags worth of food and drink to use up over the weekend :-)