I’m a MUG and I’m proud!
The weekend was
a bit of a rollercoaster, some up’s, some down’s and a bit of flat stuff too. I
eventually decided to go over to Chinnor to watch the Rams 1st XV
and as Max wasn’t working he came along for the ride too. I think he also
remembered that Chinnor do one of the best burgers on the circuit. I had it in
my mind that the match was a 2pm kick off for some reason, so we kicked our
heels in the bar for a couple of hours on discovering it was actually 3pm k/o,
opps. The match was a strange one which never really seemed to take off as a
spectacle as far as I was concerned. Rams too an early lead and went into half
time all square at 14-14, it all went a bit downhill from there with Chinnor
running our as comfortable winner by 36-14. I’d always remembered Chinnor as
quite a passionate place to watch rugby with the locals really getting behind
their team. There didn’t seem to be any of that last weekend, unless I just
wasn’t in the right mood for it. I only took around 200 photos when I’d
normally expect to shoot around 350 > 400 and those I did eventually edit
weren’t up to my normal standards. A pretty early night followed on Saturday as
tiredness had taken over, dinner had been a struggle so bed was a better
option.
Sunday was one
of the highlights for me as the Rams 1st XV and support staff turn
up to help the Mini Section train and then have the fun and games of a Q&A
session in the bar afterwards.
I went up to OBR and got some cracking shots of smiling
faces, and that wasn’t just from the small players! It’s great that the Senior
players give something back to the club, they always seem to enjoy the
experience and the youngsters certainly enjoy being coached by the players,
they’ll hopefully be along on Saturday to see their heroes on playing on the
pitch. For both Saturday and Sunday at rugby I wore my “Hands Free” kit and
managed to get through a good few hours before having to change over to a normal
push HME filter. The reason for the change on Saturday was vaguely amusing as
one of the guys from Rams reckoned I’d got my Welsh filter in as I was sounding
decidedly as if I was from the Valleys 😊 Now wouldn’t it be a great idea if you could
get different accents from the filters? On Sunday I was showing a couple of
friends how the system works, ie you twist the filter until you get the correct
air flow to enable sound to be produced. This spurred on one wit to announce
that they’d now found my volume button, and if I started to talk bollox they
could just turn my off at the throat button!
I was again
very flat when I got home and edited the pictures. I was very, very tired and
even an hour asleep couldn’t shake the lethargy. A slightly better attempt at
eating dinner, but still not great and I’ve dropped back under the 80kg figure
again ☹
Some of you
will be aware of the Peter and Jane blog that I follow and comment on from
Facebook. The author of the blog is the very talented Gill Sims and her debut
book is being published in October. It’s called “Why Mummy Drinks” and will be
available via most outlets to pre-order (ie Amazon!). She is also releasing the
book in audio form and declined the offer to read her own words. So, the
publishers searched far and wide before coming up with Gabrielle Glaister as
the perfect voice for “Mummy”. Most of you will probably know Gabrielle best as
the actor who brilliantly played “Bob” in Blackadder.
Collector “Hi,
have you got a few minutes to run through a case with me?”
Robert “Yes,
come in, I can give you 10 minutes, what’s the problem?”
Collector
“Well………… “Bob”….. I was hoping……..”
Robert “GET OUT
OF MY OFFICE YOU PIECE OF SH*T”
Of course the
office door had been left open so the rest of the staff could hold a sweep
stake on how long before “Bob” blew his top!
I’m getting a
bit concerned with Countrywide Supplies, the company who are supposedly my one
stop shop for my filters, bases plates, etc. Over three weeks ago I called them
to discuss changing my prescription order to reflect that I’m working with the
hands free system but I’m relying on supplies given to me by Caroline at RBH.
Countrywide said to leave it with them and they’d sort everything out for me.
Well, three weeks later I still hadn’t heard anything so I called them back.
The girl I spoke to gave me the biggest load of bullshit I’ve heard in a long
time. She umm’d and ahh’d her way before saying that Caroline had been on
holiday and they couldn’t contact her. That was a blatant lie as I know
Caroline has been working as I’ve met with her! I let loose at the poor girl on
the phone, the one who’s supposed to be my day to day contact. I realise I’m
lucky to be getting all these medical suppliers free of charge, but I’m not
overly lucky to have to be using them in the first instance, and I certainly
don’t appreciate being lied to. If they’ve cocked up and forgotten the order
then that’s fine, just admit it and get it sorted out. I’ve been promised that
the order will go in without delay, but I’ve no confidence that I won’t be
calling them up again in a week’s time. (At the time of publishing they haven't reverted to me!)
Thursday was a
full on day. An early appointment at my Opticians as my latest bunch of lens
have been splitting after a couple of weeks, rather than lasting the one month
they’re supposed to. I’ve used the same opticians for probably the past 20
years or so and whilst perhaps not the cheapest, they do offer a great service.
The long and short of the appointment is that my lens is being changed to one
slightly more robust at no extra charge and a free sample was provided on the
spot. I had an hour or so to spare after my visit to Eyesite so I decided to
get the now normal “No.1 all over” done as my hair was getting a bit flyaway J There was a girl in the barbers who I hadn’t
seen before, I’m pretty sure she was Polish, when I say down in the chair she
asked if I minded telling her about “Lary” and whether it was down to smoking?
I explained that whilst it had never been proven in my case it was highly
likely that was the reason for the cancer. She explained that she’d been
nagging her boyfriend for ages to pack in and would be telling him about me
when she got home. I wrote down the blog address for her, so if you’re reading
this, hopefully your boyfriend will take notice. Last Sunday, whilst up at OBR,
a young lad of about 5 or 6 tugged at my trousers and asked why I spoke with a
funny voice. I’d already decided that I was going to always answer that
question the same way. “I was stupid, I smoked, so don’t smoke when you’re
older.” The little lad looked at me and just said “Ok” before wondering off to
do something far more interesting than talking to an old bloke.
Thursday was
also my first meeting with the Reading Lary Club. I’ll admit that I was a bit
nervous beforehand, almost like being the new boy at school. To a man (and one
woman) they were a great bunch and it was interesting to be in a room with
everyone speaking via a Lary. There was only one chap who was using Hands Free
and he admitted that sometimes he struggled with it. I was by far the newest
member, the oldest Lary was done over 20 years ago, the newest, (bar me) was
about 2 years ago. Caroline from Speech Therapy was there and gave a short talk
about how it’s possible to smell by using a technique she showed the group. She
passed around half a dozen items for us to have a sniff at. The only one I
could smell using the new technique was Marmite, so, it looks like I’ll have to
do some homework to get this working. Having a sense of smell back would be
wonderful. The rest of the meeting was really just spent chatting in general,
and as the new boy there were a fair few questions winging my way. I didn’t
mind at all, and in the next few meetings I’ll make sure I chuck my fair share
of questions back as being able to pick the brains of guys who’ve been there
and got the T-Shirt will be valuable to me going forward. Whilst in the meeting
Caroline had a quick word with me about Countrywide, she confirmed that they’d
been trying to contact her, but due to her schedule they kept missing her,
she’d left a message suggesting they email her! I explained that I was getting
more and more pissed off with them, and whilst I’m not short of supplies yet, I
haven’t got confidence that they’ll supply if I am short. I do have the option
of using another supplier, so unless Countrywide get their act in order I’ll be
off to pastures new.
The meeting
broke up just in time for me to get down to the ENT Dept. for my scheduled
meeting, well by the time I got seen the meeting could have gone on for another
hour, they were running that far behind. I eventually got called in to see a
Dr. who I’ve not met before. I’d hoped to be seeing either Cool Dude or More
Scary than Scary as I had a few concerns from the last couple of weeks, but hey
ho, NHS customers can’t choose their consultants. The last time I was in More
Scary than Scary was a bit concerned about a part of my throat that wasn’t
looking too great, hence the request to stop using the Lary tube. The new Dr.
shone her torch down and was happy with the stoma size, it hasn’t shrunk over
the past couple of Lary free weeks, but she was a bit concerned that the white
bit was still there about two inches down in my throat. She called in Cool Dude
for a second opinion and he’s decided that due to my history of being really,
really, really shit at getting better, they’d better do a biopsy on the little
blighter to make sure it’s not another nasty. The question now is can they do
it under a local, or do I need yet another general? The challenge will be the
airway and how I can breath if I’m under. He asked me my opinion on the matter
which I thought was quite brave of him as my knowledge of cancer surgery is
pretty limited on the basis I’m usually asleep when it happens. I said I’d be
led by him as he’s the expert, but if he cocks it up I’ll be removing him from
my Christmas list. I’d really hoped that my days of going under the knife were
over, at least for a few years, but it seems not. The Biopsy will be scheduled
for some time in mid-October and will be done in the day unit as per usual. I
should get my own single room what with being a regular customer.
My other
concerns, that I eventually got to discuss, were the state of my chest and the
output from my chest over the last few days! Up until last weekend I’d seemed
to have got on top of my coughing and throat clearance. One HME was lasting all
day and the Hands Free was proving to be a real benefit. However since the
weekend I’ve been coughing more and more and instead of a nice clear mucus I’ve
been producing a creamy coloured type of gunk. (I do hope you’re not eating).
The Dr. is slightly concerned I’ve developed a chest infection whilst suffering
from SEVERE
MAN FLU last week. A chest X-Ray and a course of anti-biotics was
ordered, if the X-Ray shows anything of concern then I’ll be called back in,
but hopefully the drugs will do the trick.
The week wasn’t
really finishing up on a very positive note. By now I had it in my mind that
I’d be back to living a normal life and visits to the hospital would be once a
month, in ‘n out “See you later”, some hope. But, and it’s a MASSIVE, FUCK OFF
CANCER YOU BASTARD, but……………. I’m now officially a MUG! You may remember my
post back in August when we were down in Porthcothan and met up with the bold
and noble Sidney
Friday was
quiet as I was still feeling a bit gurgley (is that even a word?) and hadn’t
had a great night’s sleep yet again. However the day was an important one in
the battle against cancer as it was the MacMillan coffee and cake day.
This blog is
probably the shortest I’ve written for some considerable time. I’m finding it
hard to come up with stories at the moment and I don’t want this to turn back
into a “On Monday I did this” type of blog. It may well be that I move from
weekly publishing to either every two weeks or possibly every month.
Next week is
going to be a big one. I’ve my first business meeting up in London for work
since my Op. To say I’m nervous is an understatement, coughing an HME across a
room with friends is one thing, to do it in front of people you don’t know is
quite another. Still, I’ve a weekend to get through before that, Max is out
tonight and Saturday so we might polish up the chandeliers if we’re not both feeling
under the weather again. Then there’s the small matter of Rams taking on top of
the table side Cinderford at OBR on Saturday, should be a cracking match.
As always, thanks for reading.
#Shoulder2Shoulder
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