There’s a hole in my bucket………
This week has
all been a bit of a challenge. We left Porthcothan early on Saturday morning
and I drove the whole way back without a stop which was perhaps a bit daft,
however once we got the Exeter the roads were very busy and the services
rammed. I could just about walk by the time I switched off the engine in the
driveway. The rest of the day and Sunday were spent recovering.
The next couple
of paragraphs are perhaps not really suitable for reading if you’ve just eaten,
or are about to sit down for a meal.
The valve in my
throat which stops fluids or food from going into my lungs had started to leek
a little bit whilst we were away, but only very slightly so I wasn’t too
worried. They usually last somewhere between two and three months so I’m about
in the middle of its lifespan.
On Monday Carol
and I went into town with a view to buying her a belated birthday present and
grabbing lunch whilst Max was at work. As usual we stopped off for a coffee
when we got into town and that’s when things started to unravel. Whilst
drinking my coffee it was apparent that the leak in the valve had got worse and
the coffee was going straight down into my lungs, and coming back again at a
rate of knots through violent coughing. My HME filter was coffee coloured when
I replaced it which just went to confirm my suspicions that the valve was
playing up. We tried to carry on our day as normal but I was forced to stop
every few minutes to clear out the stoma, thankfully the discharge was now back
to being clear rather than coffee tinged, but I was still in quite a bit of
discomfort. In the end we gave up on the idea of having lunch and made tracks
from home.
I struggled for the remainder of the afternoon with coughing an
going through HME’s like they were going out of fashion. The SALT (Speech and
Language Therapy) staff had given me instructions on what to do if the valve
started to leak. So, I phoned the Dept. and left a message on the answer phone
and emailed my contact in the Dept. in case my voice mail was difficult to
understand. I’d been told that usually it would be possible to get valves
replaced in 24 hours. I managed to compound my problems when I had a bath later
in the day. I stupidly lay back in quite deep water and let some gush into my
stoma, and then directly into my lungs. In effect that’s drowning! I coughed
and coughed and coughed and coughed. It was really unpleasant and had the added
bonus of blocking up my left nostril. Now for a normal person that isn’t a
problem, but when you can’t actually blow your nose it’s horrible. I really
struggled to sleep on Monday night as the blocked nose gave me a pounding
headache on top of my sore throat from the coughing. I was a real bundle of
joy!
I was slightly
disappointed when on Tuesday morning I received a mail from the SALT team to
say they were fully booked until Thursday and unless it was urgent I’d have to
wait until then to be seen. I guess the combination of it starting on a weekend
and the Bank Holiday had caused a perfect storm for me. I made another attempt
to go into town on Tuesday morning, this time to get my hair cut. Again, I went
for a coffee and again I coughed most of the first sip back up causing rather a
mess to my Lions shirt. At this point I went back home and felt seriously
pissed off with life, the universe and everything else. The rest of the day was
spent listening to the West Indies making mugs of the England cricket team and
trying to work out just when I was going to cough up a load of gunk so I could
remove the HME and get a tissue out! Kleenex are going to make a fortune out of
me over the next few years at his rate. I’d hoped to get up to OBR on Tuesday
evening to finish off the head shots I’d started before we went to Cornwall,
but decided that discretion was the better part of valour as I still couldn’t
control the valve and any excess liquid going down into my lungs was causing
real problems.
Wednesday was
wet and miserable when I woke up, so I went back to sleep again. When I woke a
bit later is was still wet and miserable but with added “Cold”, summer appears
to be over again. Normally I’d out on a baseplate in the morning after I’ve had
breakfast, as it makes talking much easier. But on Wednesday I couldn’t be
bothered. I was having a grumpy, hunkering day and didn’t see the point in taking
out the Lary tube when it was unlikely I’d be speaking to anyone during the
day. A bit of writing, a bit of website work, and a whole lot of crap TV were
the order of the day. Oh and using the best part of a large Kleenex box as the
stoma was producing piles of rubbish to clear out. The leak is still there of
there about but the weird thing is that it doesn’t leak every time I drink?
When I arrived
at the hospital on Thursday morning I bumped into Jo, my original CNS Nurse.
I’d not seen Jo for quite some time but she commented that I was looking much
better in myself and sounding so much clearer in my voice. This is something
that a lot of people have been saying. In my head the voice sounds like a high
pitched cartoon voice, but I’d forgotten just how bad my old voice had become,
never much more than a whisper at the best of times. I’ve also managed to gain
a fair amount of weight in the last couple of weeks. I weighed myself on Monday
and was 81kg’s, that’s the first time over 80kg’s for probably around a year.
Those 34” waist jeans may yet still come into their own again.
The SALT team
of Caroline and Susan were soon ready to test out my valve to see if it was
leaking. It was quite a simple test really, a glass of water, food colouring,
quick sip and a torch shined onto the valve. Yep, it leaked like a sieve
straight down the middle. I’ve now met Caroline and Susan a couple of times and
they are like a double act, in the nicest possible way. There’s an air of
organised chaos to their meetings which I like. Not being able to get the
suction machine to work correctly then banging a head on the overhead light,
pure comedy gold. The actual procedure for changing the valve isn’t that
complicated really. The old valve is simply pulled out, not overly painful. A
plug is then put in to stop the hold contracting whilst the new valve is
prepared. It’s then inserted in a gel covered condom (for want of a better
description), the gel melts, the valve expands and hey presto, all good for a
few more months hopefully.
Caroline had
managed to get a couple more Hands Free systems for me to try out. The first
one meant I could speak brilliantly without having to press the button, but I
wasn’t able to breath out without speaking which was never going to work. The
second one worked really well after a few practise attempts, other than the
base plate was being blown out by the strength of the air. I was given the pack
to test out at home and see how I got on, but being the idiot I am I left it in
one of the hospital toilets whilst clearing out my throat before going home.
Luckily, someone must have handed it back into the ENT Dept. as I received a
call just after I’d got home that they’d got them there and Carol could pick
them up for me. I’ll be trying them out in the next week to see if I can get on
with them, hopefully no more putting my finger in the hole.
This is a
fairly short update for the week, the leak meant I had to curtail any plans I
really had. I did manage to get up to OBR on Thursday night to discuss some aspects
of the website that I can assist with. It was great to see the club buzzing on
the eve of the new season. In the 15 years or so that I’ve been involved with
the club we’ve gone from Southern Counties strugglers all the way up to
National 2, with ambitions to go higher. Gearing up to be in a higher league is
vitally important. If a club was to settle for its lot in life it would easy to
get complacent and drop down the pyramid again. The club may not make National
1 or Championship level, but having the ambition is to be admired. I really do
love the beginning of September with all the dreams and aspirations that the
teams in the club, from U6s up to the 1st XV, have. It also means
that I get to put on my nw Mary Terrace Wrist Band that I’ve been wearing for
the last four seasons.
This weekend will be a busy one on the camera for me. I’m giving up
my self imposed exile at Dry Leas to go and watch the Rams take on Henley RFC
in what is being billed as the Battle of the Thames. I’ve had issues with
Henley for a number of years, stemming all the way back to when Max was an U7.
It relates more to one of the coaches that was in the age group all the way
through to the Colts. Whilst I will be visiting the club, I don’t intend to put
much money behind their bar, if you could ever get served! I’ll be catching the
train from Tilehurst, changing at Twyford where hopefully I’ll meet up with
some friends from the club. A couple of beers in Henley and then onto the
ground. Take some shots and escape on the final whistle back to the pubs on
Henley town. Max is off to Tadley RFC for the Mighty Cents first match of the
season. Tadley are a really great community club, tough on the pitch, but fun
off it.
Sunday will
also be a day on the camera. The Colts are away at Reading RFC (A club I really
enjoy visiting), and the new formed Ladies team, the Sirens are also at Reading
for a friendly.
Next week will
hopefully be my last week off work. I’ll be meeting my boss next Friday in
London to discuss my staged return. I choose to go up to London as I want to
see how I’ll get on travelling. However nothing is going to top what’s
happening on Wednesday. We’ll be in Lincoln Cathedral to watch Anna graduating,
it will be an incredibly proud day and I’m sure a few Dad tears will be shed.
And what a location to hold a graduation ceremony.
Anna moaned that she got bored of seeing the Red Arrows overhead when she was at Uni, how she could ever get bored of that sight I'll never know. I still miss Concorde going over every night at 7.l5.
As always,
thanks for reading.
To be
continued…….
#Shoulder2Shoulder
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