Monthly Archives: July 2010

Day one at The Trust

Well Wednesday has come and gone, but this is the first opportunity I’ve had to write anything. Wednesday morning saw my alarm go off at 6am, and rarely for me, and maybe because I was looking forward to the day ahead, I almost jumped out of bed wide awake. I had time for my ablutions and a bite to eat then set of for Cambridge. I had left plenty enough time to get to The Papworth Trust as the traffic just as you get to Cambridge can be a right pain in the gluteus maximus, but I arrived nice and early much to my relief.

The day started with the photography workshop where I was introduced to the group and I briefly showed them some of my prints. The group leader explained that they had been working on a montage of photos aimed at creating a rainbow and each week they concentrated on a particular colour. The days colour was blue, so we hunted out various objects of the blue variety for everyone to photograph.
Everyone had a different camera and although most cameras have the same functions, they are all set up differently, so the first challenge was to help everyone find the macro setting on each camera!

As the morning progressed I got to know the people on the workshop better and it’s been somewhat of a revelation. Firstly I found it remarkable how all the people there with varying levels of disability were all very keen, positive people (it gave me a little more perspective about my sulky days!). Secondly they all made me welcome and it was a complete pleasure to work alongside each of them and help out where they wanted it. I enjoyed every minute of it and I’m already looking forward to seeing everyone next week.

The afternoon was a bit more of a challenge for me as I was somewhat out of my comfort zone! I helped out in an art workshop and the course leader is on her holiday, so it was down to a gifted member of staff and myself to help another group of people with their already begun oil paintings.
Now I went to art college and I did do quite a lot of oil painting but it was 15 years ago, so I was more than a little apprehensive about messing with peoples half completed paintings in case I made a horrendous mess of them. All in all though the afternoon passed by without me causing any disasters and I am becoming familiar with another group of remarkable people. Once again I’m looking forward to getting back.

My first day has been an eye opener, and its perhaps a little to early to say, but I’m going to say it anyway: I’m glad I made the effort to apply for a voluntary post at this charity. I can see me being of help to others and helping myself to feel better as a person at the same time.

Volunteering part II

Well I went to meet with the manager of The Papworth Trust Arts Centre yesterday all dressed up in my suit – that I had to dust off first.
Anyway it went well, the manager showed me around the building describing all the things they do and I met some very interesting people – people who make my occasional whining quite embarrassing and are inspirational.
I have been asked to come back next week on a Wednesday and help out with the photography and art workshops which I’m truly looking forward to, this time no suit thankfully

Just need to do a CRB check on me and all will be excellent (Can’t remember there being any skeletons in the closet!)

This will be a good chance to make use of myself and help others while at the same time helping myself, so today I’m what is said in the UK “Chuffed to bits”


First the sad news, one of the patients from the afternoon shift passed away last week, he was in a bad way for a long time, but according to several other patients he was a lovely man and was never one for complaining. Perhaps when I feel sorry for myself I should think about that and be thankful that I’m in relatively good health with my treatment (give or take the gout!)

Now the good news, what with all the heavy thinking about my future recently I looked into the possibility of volunteering for a day or so a week at a charity. It would help get me out of my rut and help me meet new people and make more friends, perhaps giving me some of the training needed to have a career in the charity sector if I’m lucky enough to get another transplant.

I looked into Kidney Research UK which is in Peterborough, Cancer Research based in Norwich and then stumbled across The Papworth Trust just outside Cambridge. The Papworth Trust helps people with varying disabilities “….through services including Employment, Vocational Rehabilitation, Housing, Personal Support, and Learning for Life and Work.”

Some of the Activities they do are: Digital photography – I like to think I’m quite good at that…, Art – I’m fairly good at that, Guitar lessons – I certainly could help with that, and fishing – I’ve lived on a fishery for 10 years! SO! I’m hoping I can be of use to them using skills I’ve learned over the years.

I would go across on a dialysis day, help out then go on to Addenbrookes for my treatment. It would mean an early start and late to bed but I can hopefully lay in a bit the following day.

Anyway I have contacted them and they want to see me on Wednesday so fingers crossed they accept me – and hopefully I’m up to it!

The Papworth Trust

Down in the Dumps

I’m having one of those days today – Generally I’m in an upbeat mood, maybe it’s lack of sleep, but I’ve found myself down in the dumps today and this evening. I went to Swaffham to one of the pubs there – only to stand on my own at the bar drinking ginger ale. I looked around and all I could see indoors was old men, and outside were people half my age drinking. I left there and drove to Kings Lynn and went to a pub called the Lattice House. Somehow I ended up sitting at the corner of the bar hugging my alcohol-free beer thinking dark thoughts while couples stood around me happy as can be.

The thought popped into my head that there is a very real possibility that I will never find someone and the annoying thing is it will entirely be my fault for not conquering my fears.

So I must fight the doldrums, I WILL join the gym and will start to swim again because I know from past experience the more active you are the better you feel. Might even lose weight as well!

I also need to sit down over the next few days and think long and hard about what I wish to achieve in this life and think on what is realistically obtainable. I don’t know how long I’m for this world and need to make the most of my time, not spend it sulking and doing nothing!

I guess we are all entitled to down days but it’s up to us not to let it get the better of us and fight it.

Anyway enough of that here’s a photo from my other blog taken a while back. Hope you like

To Gym or not to Gym

I have become a bit lax of late so far as my physical condition goes. I keep telling myself that I need to get into some sort of shape, lazy me says round IS a shape…

I suffer terribly from gout and for no apparent reason it can strike. I can get it in my feet, hands, knees and shoulder and when I get a full on attack it’s totally debilitating. I was on a previous mission earlier this year to lose weight and gain some measure of fitness by swimming as it is something  I enjoy, and I was having some success but a couple of bad attacks put me off – until now.

Here comes the rub. Transplant surgery will not be considered if someone is over a certain body mass, and while dialysis is good as a renal function replacement, its not good forever, over time the body deteriorates. The average mortality rate on dialysis I believe is about 9 years (I hasten to add that is certainly not always the case – some people have been on dialysis for many years). So it makes the best possible sense to exercise regularly to keep the body and heart as strong as possible – not easy if you have kidney failure as tiredness, fatigue and illness limp with you every step of the way.

My “Leisure Card” for my local sports centre includes on it a discount both on swimming and the dreaded gym. I’ve always found gyms to be frightening places with strange mixes of people ranging from the fad gymsters who only want to loose a few pounds to fit in their skinny beach-ware to the Iron Man/Lady competitor and finally the Meat Head who struts around the gym as though he owns the place, sneering at us mere mortals who break out into a sweat just trying to mount the exercise bike.

I know that I have to brave it, but just can’t stand the idea of people’s snide looks and remarks. Perhaps I’ll have a t-shirt printed with the words “I’m a dialysis patient so ‘eff off unless you have something encouraging to say” – or words to that effect. But go I must, so I’ve got the t-shirt sorted, I’ll also need trainers and tracksuit bottoms – shorts are for people with muscles, and I more accurately depict a spud on 2 cocktail sticks.

I could always go in a spandex body suit – that should empty the gym quite quickly…..

Finally there is the dreaded Gym Induction – where a Greek god/godess fitness instructor assesses you and your gym prowess before administering a gruelling, torturous fitness plan designed to make you a wheezing cripple crawling on all fours to the drinks machine every 5 minutes.

The more I think about this the more I’m looking forward to it……Not.

Maybe I should stick to swimming for the time being….. I can do floating

Whatever I decide, I will keep you posted

Dialysis at 2000 degrees

I cant for the life of me work out the system at the dialysis unit. It was a wee bit warm in the unit this evening. In fact as I walked into the room my 2l fluid overload dissipated as I proceeded to leak from every pore. In their wisdom they had placed a frail, sickly and recently operated on patient under the Air Con unit, so when he complained that he was cold the air con was switched off. That left the other 10 of us to broil for 4 hours. Why did they put him there for heavens sake?! There are plenty of places in the unit that are away from the air con.  Anyway after an hour and a half drive home with my head hanging out the window like a dopey dog I’m now sitting in my room with a fan on full blast blowing out the cobwebs from between my ears.

I usually cope with a dialysis session well but every once and a while one comes along that is torturous and seems to go on forever – tonight was one.

Rant is officially over…..

Dating on Dialysis

Hmmm, this is a toughy, and I’m hardly the expert as I’ve been single a long time now, but I thought I’d touch on it here as I’m pretty sure it’s going to come up on a frequent basis.

I’ve never been one for chatting the girls up, in fact if I did pluck up the courage to talk to a lady, my brain instantly stepped in and scuppered my chances as I turn into a gibbering mess. I like to call it “b*ll*ck-chops” – where you open your mouth and a load of b*ll*cks fall out.

And that was before my health went south. Before I thought I had issues, now I KNOW I have issues! I know the biggest hurdle with me being single and a dialysis patient is actually ME.  I have got it into my head that no-one will want someone like me, someone who is penniless, weak, tired, emotional, still lives with his folks and suffers from gout. Not to mention the scars from previous operations. When I start thinking about that I feel I am doomed to a lonely existence.

Its a weird situation to be in and all to easy to give up, but I have always been a stubborn git and refuse to give up entirely on the hope that I’ll find someone. Granted that someone would have to be special, but that’s who I wanted in the first place!

I dabble on the internet dating, but its always difficult to know when to fit in that clanger that your really quite ill. Do you tell someone straight away or wait until they know you? The danger then is that they have invested in you and you have kept a prrrretty big secret – not a good start to a relationship. So far my honesty has met with no success, just a lot of well wishes. Which is lovely. If I wanted well wishes I’d send myself an e-card from Hallmark.

Maybe hypnotherapy is the way to go. If I could learn Hypnosis I could make someone fall for me.   Only kidding – I meant me go and get hypnotised so I’m not so lacking in confidence. I wonder if that would work?

The thing is I know deep down that in a normal environment over a period of time I’m sure that most women wouldn’t care about me being a renal patient and that hopefully they would come to like me for who I am – It’s because I’ve taken such a battering over the last so many years that all confidence is gone and competence has eloped with it.

Anyway I’ll continue my merry rant on singledom another time as its 2:40 am and I need my beauty sleep.

Cut-backs? What cut-backs?

It’s about 2000 degrees in my room right now so sleep is keeping its distance. So I will blog!

Ever since I started dialysis again back in September we have had a mixed blessing in the dialysis unit.  Each bed or chair had a small t.v. hanging from the ceiling. Which was great. They were however becoming long in the tooth and some were malfunctioning. Also the reception left a little to be desired, for example I could tune into ITV and watch the World Cup but would have no idea as to who was playing and what the score was as any text on the screen trans-morphed into Klingon and the game looked like it was being played in a tornado.

However! We arrived this week as normal for our session and lo! We have new state of the fart flat screen tele’s – one for each bed or chair, hanging from the ceiling. The reception is wonderous, the sound in stereo rather than through one ear piece as before (if you were lucky)

In all I’m a happy bunny. One hitch however is there is only one remote control and 11 t.v.’s.  A universal remote if you like. People who have haemodialysis will see the problem here, and I shall explain. Once you are “wired up” so to speak – you can’t get up and move around, your restricted to the bed or chair. So it is up to someone not on dialysis to pass the remote around so everyone is happy – as if the nurses didn’t have enough to be getting on with!

One bit of fun though – alright mischief – is that when you do have the remote control, you can then change other people’s channels and piss them off.   Hours of fun.

Late night ramblings of a mentalist

The following was taking from my photo blog:

“Late night ramblings of a mentalist”

Well its now in the wee hours of Sunday morning and I’ve just heard the rumble of thunder in the distance. My room is hot and stuffy and after treating myself to a couple of glasses of wine I’m still wide awake. Sometimes my brain or what’s left of it is working overtime, flitting from one thing to the next, never really settling on one continuous thought – this is one of those nights!

I don’t know how many people actually read my blog and to be honest I’m not too worried, I created it so I had some sort of outflow for my passion for photography, but also for times like this where I feel I have to vent pent up thoughts and emotions.

Something that I find hard to express vocally to those that care about me is that I do struggle emotionally at times. I guess like anyone in my position I don’t wish to be an added burden to family and friends who not only have their own worries but also worry more than enough about me already.
So perhaps just putting it in writing/type will help – sort of a catharsis!

So what’s bothering me tonight then?
I’m very good at compartmentalizing things and pushing things to one side in order to deal with problems at hand. Dad calls it “bottling it all up”. It’s a “skill” that’s probably kept me sane and relatively upbeat through the years of varying degrees of illness. The down side is that although I’ve packed these thoughts and emotions away, they are still there waiting to be dealt with at a later date.

Something that I’ve never really confronted head on is the fact that I’m not a normal person who decides his or her own fate, but rather someone who has to try and make the most of a shitty situation, a situation where you have no control over your overall future.
I’m simply not the person I was before my kidney failure in so far that I will never be able to do a lot of the things that I always dreamed about doing.
I dreamed in the run up and immediately after my first transplant that I would go to Uni and study photography and then travel the world.
I managed the first part – just, after fighting Hodgkins Lymphoma in my final year – which damaged the kidney (the lymphoma not the final year, although it was hard graft!)
For a good few years I have spent the time with a slowly deteriorating kidney helping my parents with their work while I tried to get some level of “fitness” when in fact things became harder and harder due to gradual failure of the kidney ultimately leading to the present where I’m of very limited use to my folks and have to travel to Cambridge 3 times a week for 4 hours treatment just to stay alive, waiting for a transplant that may or may not work.
I’ve been here before of course and this time I’m not a scared 19 year old, but I am now 34 with bad Gout that seems to strike at any time which I will most likely have for the rest of my life.
Dreams of travelling to far off places seem very distant right now, and as for a career in Landscape and nature photography? Well that may no longer be possible full-time at any rate. It would be a great challenge for a healthy person these days.

So its with an element of sadness but also relief that I write what is turning into an epic post.
Perhaps if I’m lucky enough to get another transplant that works and lucky enough to find someone who will employ someone like me on wage where I’m lucky enough to have a place of my own and lucky enough to be able to treat myself to the occasional holiday abroad with my camera I’ll be happy. Maybe, just maybe I might be lucky enough to meet someone on the way who understands my situation and falls hopelessly in love with me!

Oh, and I want a pet dog at some time too!
Not too much to ask for is it?!

Hello world!

Well hello there and welcome to my blog!

Life on dialysis can be extremely challenging, as if life wasn’t challenging enough as it was. I’ve had a look on the web for blogs of people suffering with the same condition as me, they are few and far between, and I was desperate to see and learn how people live with this problem and how they cope. I couldn’t find a blog in the UK so I thought lets make one then!

I’m going to try and share with you my ups and downs, crack a joke or two, and try my best to impress you with my photography occasionally too. Life is a journey they say, mine has taken a few unexpected detours and I wish to share the adventure with you.

Chris P