She Cannae Take It Captain, She’s
Gonna Blow!
When I
mentioned on the Peter and Jane FB page that my last update would be my final
weekly update for a while I was amazed at the response it got. Folk were saying
how much they enjoyed reading the blog, even with the underlying subject
matter, and that they hoped I’d keep writing and publishing. Well, my intention
was never to stop writing all together, more a case of publishing every couple
/ three week’s or when there was something interesting to say. I was very
conscious that I could fall into the trap of writing for writings sake and
publishing a long list of “On Monday I did……” rubbish.
I’m sure by
know you’ll all have heard the story of the Ospreys Hooker, Scott Baldwin? Well
in case you haven’t, Ospreys were down in South Africa to play the Cheetahs in
the Pro-14. The players had been taken to a wild life park prior to the match
and Baldwin thought it would be a great idea to stroke a lion through the bars
of his cage (the lion was in the cage, not Baldwin). I’m sure you can guess
what happened next…….. Baldwin must be the only player ever to have missed a
match due to a lion bite! The story of Baldwin and the hungry lion reminded me
of the only time I’ve been to South Africa. It was about 18 years ago when a
good friend of mine got married in Jo’burg after moving down there. Originally
I wasn’t going to go, but on the spur of the moment I booked a flight leaving
late on the Thursday evening, and coming back three days later on the Sunday
afternoon. I would be meeting up with two mates who’d sensibly decided to go
for a two week holiday rather than a long weekend. The flight down was pretty
uneventful once the RAF Rugby squad who were on the same flight decided to calm
down and sleep rather than trying to drink the plane dry. We landed on time in
Joburg, I eventually cleared customs, I don’t think they see many “Hand
Luggage” only passengers, and made my way to the arrivals hall. Here my
problems started, I realised I’d arrived in a foreign country with no idea
where I was staying and no way of contacting the bride groom who was nowhere to
be seen in the hall! I must have been approached by every dodgy taxi driver in
South Africa asking if I needed a lift before Rob strolled (slowly) into
arrivals with some weak excuse about heavy traffic or some such bollox.
My first
impressions of Joburg where interesting let’s say. We reached Rob’s car and as
it was 80 degrees I started to wind down the window, before Rob wound it
straight back up again and deadlocked the doors “Better to be safe than sorry”
he said. We drove off to some small retail unit so that Rob could pick up his
suit ahead of the wedding the next day. I stayed outside of the shop to get
some fresh air (ok, to have a smoke!) and was approached by a chap within two
minutes asking in a very heavy South African accent what I was doing hanging
around. The fact that he had a semi automatic rifle on his shoulder and was
pointing it at me meant I gave a fairly stuttered answer rather than my usual
glib sort of reply. In the country for about an hour and already someone is
pointing a gun at me! All was eventually ok as Rob appeared from the shop with
his suit, explained to the guard that I was just a poor tourist and off we went
to my digs for the next couple of days. No, I know Joburg is in Africa, and I
know elephants are in Africa, but I really didn’t expect them to be in the
city. I was casually taking in the sights on the drive across town when
rounding a corner there was an elephant walking on the opposite side of the
road, I kid you not! I was both flabbered and gasted at the sight, until Rob,
who’d seen my mouth drop open, explained there was a circus in town and the
poor animal was probably just being exercised.
We arrived at
the house I was staying at in good time and so began three days of hospitality
that I think will never be beaten. All the people I met were amazed that I’d
gone over for only three days and seemed really appreciative that Jim, Jools
and I had made the trip from the UK for the wedding in the first place.
To get to my
point of the story………… the wedding reception was held in the hills above Joburg
in some sort of game reserve. Whole pigs, sheep and cows were being barbequed,
wine of a quality you have to drink to believe was being quaffed and I was
having a whale of a time. Around midnight the party started to break up and we
jumped into any cars that happened to be going back down into town and drove at
break neck speed back through the wild life park. It was here that I spotted a
baby hippo walking all by itself along the side of the road. I was convinced it
was lost and we needed to stop to pick it up and take it back to the circus
(I’d drunk my fair share of potent red by this point!). However much I insisted
the driver still refused to stop, his excuse being that if I got out of the car
and stroked baby hippo there was a pretty good chance that mummy hippo might make
an appearance and stoke me, the car and all the occupants too. To me it seemed
like a pretty weak excuse, but he was driving and I was a guest, so I didn’t
argue too much. Anyway, he promised beer if I would just shut the feck up about
the cute little baby hippo!
We eventually
arrived back into down Joburg at stupid o’clock and made straight for a bar
frequented by the biggest and loudest Afrikaner’s imaginable. They were really
genial chaps until, apparently, I spilt one of their beers, forgot to tug my
forelock when apologising and wasn’t too fussed when pinned up by my neck
against the wall. We escaped with our dignity just about intact and I woke up
the next day none the worse for wear, other than a stinking hangover.
South Africa is
a country I intend to re-visit, and for more than just a weekend. There is some
dim and distant plan for Carol and I to go on the next Lions tour which just
happens to be to South Africa, maybe this time I’ll be allowed to stroke a baby
Hippo.
I’ve now had my
first real business trip up to “That there London town” since my Op. I was
really nervous as I would be in a two and half hour meeting with some folk I’d
not met before and others who would have had a little knowledge of my
condition. The train journey up was fairly painless, albeit with a ten minute
delay, and I managed to get a seat which is always a bonus when travelling from
Reading. When we arrived at Paddington I let all the other passengers disembark
whilst I sorted out the stoma with a quick clearance. My current chest
infection (it isn’t pneumonia as confirmed by the hospital following the chest
X-Ray) means I’m having to clear out far more often until it clears up. A train
guard boarded whilst I was still sorting myself out, he saw the HME filter on
the chair next to me and said “No hurry sir, you take as long as you like.” I
had to tube across to St Pauls which for those who don’t know the underground
means taking the Bakerloo line to Oxford Circus and then changing to the Central
Line. At midday neither line was overly busy, but by the time I got to St Pauls
I was in need of another major clear out. I was slightly hampered really. As
well as the chest infection, the valve had started to leak again which meant I
was rationing how much I was drinking so as not to get fluid into my lungs.
This valve has only lasted just over a month, whereby I was hoping the second
one would go at least 6 to 8 months without needing changing. The effect of the
valve leaking means that fluid leaking into my lungs comes back out again from
either the stoma or worse, my nose, and at a rapid rate of knots too! Not
something you’d really like to happen during a business meeting with external
parties.The meeting was a painful necessity, but I managed to get through it ok
without having to make my excuses and dash out of the room. The journey back
home was all together more challenging as I caught the tube at St Pauls at 5pm
along with all the other daily commuters, and it was totally jam packed all the
way back to Paddington. At one point I managed to get a seat, but gave it up
one stop later when an elderly lady got on the train and was standing up. I had
a few people giving me second glances as my stoma was on view for all ‘n sundry
to stare at, but there were no comments that I could hear. I was lucky on
arriving at Paddington as a train going direct to Reading had just had its
platform announced, so I threw women and children behind me as I raced the
other commuters for a seat. I’ve not lost that much speed whilst I’ve been off
it would seem as I easily found that elusive aisle seat and settled down with
my iPod and kindle. This time I didn’t offer my seat to anyone who wasn’t quick
enough, I’m afraid it’s every man for himself on the 17.22 out of town! By the
time I stepped through the front door later in the evening I was well and truly
done in. I used to really enjoy my regular trips up to town, the hustle and
bustle of a big city gave me a buzz. I’m afraid all I wanted to do was get in
and out in one piece, I hated being confined in crowds and I hated having to
stop and clear out my throat in busy public areas, but I guess this is my
future.
The one thing
that I did enjoy about my trek up to town was being able to stick my iPod on,
flip to Tom Petty’s Greatest Hits and tune out to great song, after great song.
I was very sad to hear of Tom’s death on the previous Tuesday evening. Petty
was one of those songwriters who was able to tell a story through his words,
and he managed to seamlessly cross the bridge between rock and pop music.
Perhaps not as well known as he should be, but I’m sure many people who
wouldn’t know his work would actually recognise his songs – Don't Come Around Here No More
The saga with
Countrywide has continued. Despite assuring me that they would update me on the
progress of ordering my FreeHands supplies I’d heard nothing from them at all.
So, I sent a fairly scathing email to their contact address advising of my
dissatisfaction with their service, and explaining that I was now out of
FreeHands filters, this in turn was having an adverse effect on my confidence. I’d
asked for an update / response by close of business on Monday 2nd
October. When I hadn’t heard from them I sent another mail asking for immediate
contact. Again, nothing happened so I called them myself on Wednesday 4th
October to try and find out what the heck was going on. The contact I spoke to
again gave me very poor excuses as to why I hadn’t been contacted. She
confirmed she’d received my mail, but couldn’t explain why I hadn’t been
contacted. I insisted that she pass me onto her manager, who it turned out was
aware of my case and had also seen my email! He also couldn’t explain why he
hadn’t had the courtesy to respond, especially when I had explained my dilemma
relating to the FreeHands filters. He blamed the hospital for not responding to
them, I explained the conversation I’d had with the SALT team which seemed to
put him on the backfoot. It was a very unsatisfactory phone call which left me
feeling very frustrated and, to a degree, upset too. I’m not exaggerating when
I say how much higher my confidence is when I’m using FreeHands, it’s like
being a normal person again, instead of a freak who can only speak by pressing
a button on his throat.
I met Caroline
my SALT on Wednesday so that she could change my leaking valve, she confirmed
that she’d spoken to Countrywide last week and had told them that whatever
FreeHands kit I was requesting was ok as far as she was concerned, so I’d got
no idea what the heck the hold-up was. She’s since confirmed that Countrywide
have agreed to get my order processed as a matter of urgency, after four weeks
of chasing up! Hopefully now that this hiccup is over the ordering process will
run smoothly, but I’m not convinced, especially if I’ll have to deal with the
same person who’s basically lied to me over the past couple of weeks. The jury
is well and truly out.
My requested
supplies eventually arrived in the post, only to be lacking the glue I use to
stick the baseplate to my throat. I mailed my mate at Countrywide asking if it
was going to be delivered later. And guess what? He didn’t reply, a second mail
was eventually answered, not by the Manager I’d written to, but by the Customer
Service person that I’d got the real issue with. The excuse for not replying to
the initial mail was again pretty damn poor, but she confirmed that the glue I
required had been ordered and should be with me by “Return”. So, when on
Thursday evening a parcel arrived at home I thought we’d finally got the issue
sorted. What a poor deluded fool I was. Instead of the required glue, it was a
duplicate of the order that had been received the previous week!!! FFS, how
sodding difficult is this????? My email contained both barrels as to the total
incompetence of the service I’ve received. I copied in the Manager, but based on
previous experience I doubt very much he’ll have the balls to respond. I’ve
received yet another totally unsatisfactory reply claiming black is white,
despite me including my previous mails for reference. It’s now beyond a joke,
the women who I’m dealing with is, as well as being a bare faced liar, totally
incompetent.
The actual
process of removing the valve was a bit more painful this time due to the valve
having a larger flange than the original. Carol came along to see how the
process went so that in future when I’m able to do it myself she’ll be able to
assist. After a couple of tugs, a couple of coughs and a bit of good luck the
valve popped out and a new one was inserted. So, for the time being I’m back to
being watertight and can happily drink fluids without worrying about trying to
drown myself.
I’m becoming
increasingly concerned that the NHS I’m dealing with is almost at breaking
point. Whilst the face to face service I’ve received from the medical staff has
been outstanding, with the one notable exception when I was having RT and
Chemo, I’m afraid the Admin side leaves a lot to be desired of late. As well as
the issues I’ve had with Countrywide I’ve found I’ve had to chase up the admin
Depts. at RBH far more often regarding future appointments. Whilst I was having
my valve changed I took the chance to chase up when my pre-op assessment and
biopsy would be scheduled for. I’d been promised a call early on in the week
with the dates, but nothing was forthcoming. I managed to get the dates, but
I’m not sure I should really have to chase up all the time. I’ve also received
a letter giving me an outpatients appointment for 6th November over
at Thatcham! I’ve not been to Thatcham in the last two years of treatment and
I’ve no intention of starting now. I called up the ENT Outpatients team to work
out what was going on, only to be met with probably the most unhelpful member
of staff it could be possible to imagine, I felt like telling her to apply for
a job with Countrywide. She seemed to think that I’d had all my appointment at
Thatcham. I’ve explained that I’m actually on holiday that week and wouldn’t be
attending. She didn’t want to listen to anything else I had to say and just
insisted that she’d send another letter with a revised date, and then hung up
on me! I’ve mailed the CNS Nurses to see if they can advise of the best way
forward. Hopefully they’ll respond, if not I’ll become a statistic of a patient
who doesn’t turn up for an appointment. I know only too well from Carol’s day
to day work experiences how badly stretched the NHS is at the moment, and I
don’t suppose it’s a barrel of laughs working for any of the Depts. but is it
too much to ask that promises of contact are actually kept too? Patients are
usually in a fairly fragile state and want to know when their treatment will
take place. I’m lucky in that I’m savvy enough to take matters in my own hands
and make phone calls. I’m not sure that elderly and vulnerable people would do
that for themselves, they may well sit at home and stress themselves out.
Anna had been
on a training course in Guildford for the early part of the week, and came to
stay with us for a couple of days before heading back to Gods Own County. So,
what else would you expect us to do on Friday night other than visit Nino’s for
a family meal. I’d been lucky enough to win a bottle of prosecco in Nino’s
MacMillan Coffee Morning draw, so I tasked Anna and Carol with necking the
bottle, a task they were over qualified for it would seem. For the first time I
can remember neither Nino was at the restaurant on Friday evening, I’d had an
earlier message from Nino Jnr, but the restaurant was in good hands, the young
lady who was in charge was as nervous as a bunny in the headlights, but she did
a superb job on what was a pretty busy evening. The Nino’s should be proud that
they’ve trained their staff so well that you (almost) don’t miss them if
they’re not there. This was the first time Lary had been to our favourite
eating place, and apart from a couple of minutes where he decided he was going
to play silly beggars he was generally on decent behaviour. A menu which for me
was mainly fish based certainly helped. As a slight aside, I’ve been avoiding
red meat for a while now unless it’s minced. I thought it about time to see if
I could now manage a steak following the improvements I think I’ve made in
managing my diet and my eating. Bone in Sirloin was the meal of Sunday evening,
and with the first bite I realised that I still can’t manage it. I was pretty
upset as the taste was what I’ve been missing, I just couldn’t manage the
texture. I will keep trying periodically, and I’ve told Carol and Max that I’m
happy to cook steak for them, I’ll just choose something easier on the palette
for myself.
Surprisingly
enough the rest of the weekend was taken up watching rugby. Max played for the
Mighty Cents at OBR against local rivals Abbey RFC. I’m afraid it was all a bit
one sided. As usual I was taking photos and had positioned myself behind the
posts the Cents were attacking. After about 5 minutes the first try was scored
by probably the oldest player on the pitch. As the Abbey players gathered under
the posts the skipper gave a rousing speech about how the Cents didn’t like the
physical nature of the match and would just try to run around them. Well, he was
right as the Cents ran round them to knock up 62 points! News filtered through
that the 1st XV has won comfortably on the road, and the Dragons
Teeth (4th XV) beat a young Beaconsfield side to make it three wins
out of three for the club.
Sunday was a
massive day for Redingensians. The Sirens, the ladies side, were taking part in
their first ever league match having only been formed less than a year ago.
They were taking on local rivals Bracknell Ladies (?) who were a far bigger and
more physical side than the Sirens. But what the Sirens lacked for in bulk they
more than made up for in core skills. 0 – 0 with ten minutes to go it looked
all the world like the match would be settled by a break away, or a mistake.
Luckily for all involved it was neither of those. Two blindingly quick bursts
from Zoe Poole in a five minute period meant the Sirens ran out as 14-0
victors. The only sour note being the nasty injury to one of the outstanding
Sirens players on the day. This put a bit of a dampener on the club house
celebrations, but the ladies are learning about the ethos of a rugby team with
each match they play.
#DoitforDani
It was whilst
at OBR that I fell into a conversation with a little girl who I’ve known for
some time, she’s the daughter of a friend of mine from the club. It was a very
similar type of conversation I’d had a couple of weeks previously with a young
child. She was asking about my throat and how I managed to speak, so I thought
I’d get her to press the HME and show her how I managed to make noises (Note to
self, next time tell them to stop pressing after 10 seconds or so otherwise I
suffocate!). She played the push the button game for a couple of minutes and
then wandered off. Only to come back a little why later to ask why I’d been
ill. Again, I kept my promise to myself and explained that I’d been stupid
enough to smoke and that was what had made me ill. She then asked why I hadn’t
listened to my teachers who much have told me that smoking was bad for you……………..
How do you answer that one? If she remembers the conversation when she’s older
and tempted by her peers, she’ll not smoke. And knowing her parents as I do
they’ll have already taught their kids that smoking is a mugs game.
I’ve discovered
another slight downside to not being able to talk normally. Whilst in bed on
Sunday night I managed to twist me knee, don’t ask me how! I’d taken off my
baseplate and was just wearing a protective flap over the stoma which meant I
had no voice whatsoever. This meant that when I had a sharp, stabbing pain in
my knee I wasn’t able to let out my usual stream of expletives, all I could do
was mouth “F**k, f**k, f**k!” it really doesn’t have the same release valve if
you can’t hear the scream! I had to get sympathy from Carol by hitting her so
she could see just how much pain I was in, not sure that was my wisest move, as
she just laughed.
On Thursday I
had my Pre-Op Assessment appointment at RBH. I guess I’m becoming a bit of a
regular in the ENT Dept. as when I walked in I was greeted by the receptionist
with “Hello Mr Clark, take a seat, she won’t be long.” (I hadn’t even said
hello at this point.) The Pre-Op nurse came out about 5 minutes later and
greeted me with “I thought I’d seen to back of you last time?” There’s nothing
like feeling wanted is there? 😊 To be fair to her, I seem to recall saying
last time that I hoped I’d never have to see her again. It was all a pretty
painless experience as my “History” is fairly well known, she even confirmed
they’d make a note of my tendency to have an adverse reaction to a General
Anaesthetic. I’m now all set to go under the knife on 24th October,
rocking up at 7.30am so no food beyond 2.30am, it’s been a while since I’ve had
a midnight feast, so I may go to bed on a full English fry up. We parted by
again saying we hoped we wouldn’t see each other again, and whilst I was
jocular in my delivery I got the feeling the nurse meant it…….
If you look
back at the last six months or so of this blog there are a few subjects which
raise their heads more than once. Rugby is of course up there, along
specifically with Redingensians. Then there’s also the photography that I enjoy
so much. Ignoring the obvious subject of cancer, the third subject mentioned on
a regular basis is the Peter and Jane Blog written by Gill Sims. Apparently, my
comments on the blog are reaching “Legendry” status (Not my words I assure
you!) apart from when I mention a quick and simple lasagne recipe and then I
get shot down in flames 😊 I received a message from Gill on FB a couple of weeks ago
after my last blog, wishing me the best of luck for the forthcoming biopsy. She
has her first book published later this month, it’s called Why Mummy Drinks Gill kindly sent me a copy of the book prior to it being published and at my
request she addressed the parcel to Carol in recognition of her putting me with
me over the last 35 years. Carol is known as the Current Mrs C. on the blog,
most people get the (poor) joke, but I still get the odd comment which seems to
miss the irony in being “Current” for 35+ years 😊
The above picture was taken roughly two minutes
prior to Carol disappearing upstairs for a bath, glass of red in one hand, book
in other……………. She reappeared a couple of hours later, all I’d heard in the
mean time was giggling and laughter coming from the bedroom, I presume she was
reading the book.
It’s now less than a month before we disappear
off to Gran Canaria for a week of much needed sun and relaxation. It turns out
that our visit coincides with the annual Gay Pride week which should make for
an interest week in the bars and clubs of PDI. Whilst Carol was ordering her
new #Stalker outfits for the break, apparently it’s not the done thing to be
photographed in the same outfit two years on the trot, I was slightly concerned
to see that she’d been searching for men’s leather boxer shorts, string vests
and baby oil. I think I may forgo my usual No.1 all over hair cut before we fly
out.
Today I’ve reached the grand old age of 55. Amy
of the “Photo Shop” fame, sent me a lovely message on Facebook, I think she needs a few more goes before she perfects the art, but I've certainly looked worse.
The next update will be in a couple of weeks.
My biopsy is on 24th October. As long as they don’t try and knock me
off with the General I’ll be posting the back end of that week. I doubt I’ll
have the official Jury results by then, but Cool Dude is pretty good at giving
me a heads up when he comes around to kick me off the ward.
As always, thanks for reading these words.
To be continued……..
#Shoulder2Shoulder
Inspiring read as always, enjoy your holiday.
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