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 1^st 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 1^st 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.

 The way that Rowan Atkinson managed to use the simple name “Bob” to such great comic effect was pure genius. I guess it was around the late 80’s / early 90’s that Blackadder was at its peak. At that time I was working at Security Pacific in Reading. We had an “In House” lawyer called Robert Holmes, he was very Welsh and not known for his sense of humour. It took about two episodes before Robert became known to one ‘n all as “Bob” and he didn’t take it at all well. It was not unknown for people to come up with spurious reasons to consult the on tap legal eagle in his office. The conversations didn’t take too long. It would usually be something along the lines of :

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 

Sidney celebrated his birthday yesterday with the annual Sidney Birthday Honours Awards. Carol was awarded the title of Auntie which she got for services to stalking and wine drinking (Oh and for looking after me!) I’ve been an Uncle now for a while, but was surprised and delighted to be promoted to the level of a MUG (Mighty Uncle Group) for services to living life to the full J So, when I think I’m a bit pissed off with not being able to do all the things I want to do, and when I’m moaning about having to have another medical procedure, all I need to do is think back and realise that being a MUG is a massive honour!  

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.

Nino’s always has a coffee and cake morning to raise funds for MacMillan so Max and I popped down  to partake. A couple of cups of cappuccino with Max complementing his with a massive slice of Limonchello cake. Last year Nino’s raised over £1,000 for the cause and they’re hoping to top that figure this year. I bought some raffle tickets to win a £100 meal voucher and donated some more cash to come away with these three little beauties! 

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. 

To be continued (In some way, shape or form)…………..

#Shoulder2Shoulder 

The Rollercoaster Ride of (VERY SEVERE) Man Flu 

The weekend seemed to be (Possibly, and don’t shout it) where I turned the corner? Saturday was spent at OBR watching Ma play for the Mighty Cents and lose to a decent Henley side. They should perhaps have won, but kept coughing up the pill at vital moments. Carol and I had a pleasant night by ourselves with a rather nice bottle of red and some sea bass. The best part of 10 hours sleep meant that I was feeling fully refreshed on Sunday.

I decided to see if I could get through the whole day wearing the Hands Free filter, as previously I’ve only managed about 3 hours maximum before the air blows out of the bottom, making it impossible to use. So, in it went at 9am and off I trotted up to OBR to watch some of the Colts match. I spent about three hours at the club, chatting to various friends who happened to be up there and feeling far more like my usual self. Once I got home I prep’d and cooked a full roast dinner, probably the first we’ve had since I came out of hospital. I managed to eat a pretty good portion, including roast potatoes which have previously been sticking in my throat. I eventually took out the filter at about 9.30pm. In all that time I hadn’t needed to change the filter of the base plate, I was a seriously happy chappy. That night I slept without a base plate in place and just used an adhesive flappy thing to protect the stoma during the night. I was going to leave it totally open to the elements, then thought what would happen if Penny happened to bring a mouse in during the night, open the lounge door, get upstairs, open our bedroom door, all the time keeping hold of the mouse, jump onto my chest and drop the mouse doing my stoma.

One of the only downsides of not wearing the Lary tube is that in the morning the stoma is, shall we say, a tad “Messy”. The tube would channel any overnight gunk, whereas the stoma doesn’t. Monday morning involved a good 20 minutes of prep’ing myself for my first day back at the office. I always wondered how I’d feel about cleaning the stoma myself, but it’s no real problem. I’ve a pair of hospital issue tweezers that I can use to pull out any stubborn bit of gunk out of the hole, and I use a (Clean) finger nail to scrape off any stuck down stuff near to the hole. Making sure that it’s clean is important to stop any chance of infections starting. Once I’ve manually cleansed the area I then use the special skin barrier wipes which prepare the skin for the base plate. The final act before sticking the plate on is to brush on a coating of silicon based glue to the area on my skin where the plate will be stuck, let it dry of four or five minutes and then whack the plate on, pressing from the inside to the outside to ensure there are no air pockets.

The morning continued the positive mood of the weekend. I booted up the work laptop and hey presto I was into all the system and emails without any delays! Just over 800 emails in 12 weeks, just over 800 emails were deleted with a flick of the mouse! (If they’re important they’ll write back). The only issue is that my work iPhone still won’t work. The IT Helpdesk suggested I do a factory reset and leave it for 24 hours, I wasn’t overly convinced, but followed their advice. And 24 hours later it still wasn’t working….

I worked through until lunchtime and then met a good friend from lunch prior to having a kip for the rest of the afternoon. Daft as it seems, but sitting at a desk and having to concentrate does tire me out. As with Sunday, I’d worn the hands free all day and had used my voice quite a bit too. But by around 7pm I was beginning to feel decidedly rough. I ate hardly anything for dinner and took myself off to bed at 9pm after having a large slug of morphine. My neck, shoulder and scars were all hurting and even my throat round where the tumour had been was painful too. (Which is quite surprising as that part of my throat is probably in a jar somewhere in Churchill Hospital).

Monday night was awful, the morphine knocked me out until about 1am and then I was awake on and off for the rest of the night. I could hardly move as my neck, shoulder and throat were so sore. At this point the mind starts working overtime. Is this a sign that “Its” back? When I eventually got up after Carol had left for work I was feeling a little bit more human, but my throat was still incredibly sore and I struggled to get my porridge down. Carol sent me a message when she got to work apologising for giving me a bad night last night? It appears she also had a very sore throat and was generally feeling like crap. So, panic over, “Its” not returning, I’ve got a common cold! Well, when I say common cold, I of course mean a severe case of man-flu. It’s Carol who’s got the common cold. It’s bloody typical too, Max has gone down to see Laura in Exeter for a couple of days, so our plans of swinging naked from the chandeliers has been scuppered by a nasty little bug. As I was still feeling pretty rough as Tuesday went on I again packed in work at around lunch time and relaxed on the sofa. The throat was throbbing away, but I wasn’t having to clear out the stoma any more than the past couple of days, so the positive vibe continues……

I was asked a week or so ago if I’d ever met anyone else who’s had a Lary, other than the guys I’ve met whilst at hospital, and the answer is no I haven’t. That got me thinking as to how many people are there in the UK who’ve gone through the process. It took a bit of digging around to find the answer. Wiki only quoted figures from the USA where around 3,000 people each year undergo the process. I eventually found what I was looking for hidden in the depths of an NHS Page. It turns out, that as of 2016 there were only circa 5,000 people living in the UK with a Lary. I don’t know why, but I had it my mind that the figure would be much higher than that.

Tuesday night / Wednesday morning were pretty dire in the Clark household with both Carol and I feeling distinctly under the weather. Bed by 8.30pm, trying to sleep by 9pm. We’re turning into an old married couple. One of the problems I’m having with this severe dose of man flu is the inability to swallow properly, and therefore eat properly. My throat has been as sore as it was in the dark days of Chemo and RT. However, I’m still not having any problems with the stoma, it’s clean and tidy in the morning when I get up, so, so long as this is just a severe case of man flu then I’ve got to be happy with the progress I’ve made.

As my work phone still wasn’t working properly on Wednesday morning (there’s a surprise!) I called up the IT Helpdesk, the first call I made was I’m afraid totally unsatisfactory, ok my voice wasn’t great on Wednesday, it was a bit “Gurglery” but it wasn’t that bad. The first person I got through to kept saying “I can’t understand you, please speak up……….” I hung up rather than spoke up! The second chap was fine, he asked me to repeat myself a couple of times but didn’t sound annoyed or bored with me, unlike the first operator. As I suspected, the original advice of doing a factory reset was incorrect. So as requested I emailed a specific team in out Tech Dept. and await their response. At the time of publishing I’m still not able to recover any of my contacts / emails / company apps on my phone and I’m now becoming annoyed. The rest of the morning was taken up with mandatory training, form filling and trying to get up to speed with my cases. I then turned off the laptop, sat on the sofa and promptly fell asleep for an hour or so. This “Working for a living” lark is grossly over rated!

By Thursday I was getting thoroughly pee’d off with this “REALLY SEVERE” man flu.

I tried the morphine trick again on Wednesday night and it knocked me for six as soon as I went to bed, and then “DING”, at midnight I woke up and struggled to get back to the land of nod. The morphine also had that wonderful effect of bunging me up, so it was back onto the Laxadoo drinks ☹ I was actually nodding off sitting at my desk on Thursday morning, so by 11am I packed in and let my body tell me what to do. In fairness, I’d been working since 6.30am, so not a bad day’s work. The rest of the day was a wipe out. I lay on the sofa feeling sorry for myself, having to get up every 15 minutes or so to clear out the stoma which was collecting gunk like it wanted me to buy shares in Kleenex. Dozing, clearing, dozing, clearing, dozing……. You get the picture. When I went up for an early bath I couldn’t lift my head up from the side of the bath without using my hands. That hadn’t happened since just after I was released from Churchill. We haven’t really had a proper meal since Monday night as neither of us feel like eating, let alone slaving over a hot stove. Tomato soup with grated cheese was all we managed on Thursday. I haven’t been brave enough to weigh myself this week as I’m sure I’ve dropped down below the magic 80kg mark once again. As I’m back at RBH for another clinic next week I’m going to have to try to pile the pounds back on over the weekend.

Another dose of “My mate, morphine” ensured I got to sleep quickly, but again, and I’ve no idea why, I woke around 1am and struggled to sleep deeply again. I eventually emerged from my bed around 8am, long after Carol had left for work, and I didn’t feel too bad. I’d again slept with the flap over the stoma and was pleased that it was pretty clean when I unpeeled. A quick clean and polish, on with the hands free and another day beckoned.  

Friday was a much better day, I felt vaguely like a human again and had fewer coughing fits than in previous days this week. The only continuing issue was the scar on the left hand side of my neck which is quite swollen and very sore. Carol thinks this could be due to the infection that caused the “REALLY, REALLY, REALLY, YES REALLY, SEVERVE” man flu. I’ll bring it up with the Consultant next week if it continues. 

It’s been a really strange week. It started off on such a high, plummeted downhill at a rate of knots, all down to a case of man flu (Albeit a really severe case in case you hadn’t got the point) ended back on an upward curve by the time Friday arrived.

I think what I’ve learnt this week is that if I’m going to be ill (non-cancer related) and it has any impact on my head, neck or chest, then I need to be resigned to the fact that it’s not going to be a pleasant experience and will have added knock on effects. The trick will be not to panic, listen to my body and hunker down on the sofa until whatever it is buggers off.

I realise this hasn’t been the most upbeat blog posting I’ve written recently, and perhaps some of the details haven’t been ideal tea time reading, but it’s a truthful reflection of the week. Probably the worst week I’ve had since the tunnel from Churchill was completed. So, a bit of amusement to finish with.

Regular readers will remember Amy from the Rams Sirens team who broke her leg a few weeks ago. Amy hasn’t been wasting her time whilst she’s been on strict non-weight baring instructions from the hospital. She’s been reading up on various coaching methods and signing up to some FB pages to get further ideas. One of the pages Amy signed up to was England Rugby, nothing wrong with that you might think? Until you know that Amy is rather Welsh, cut her and she’d bleed leeks! Her “Liking” of England rugby drew some rather interesting comment on her FB page, so as I was at a loose end I thought I’d show her how good she’d look wearing the red rose and white shirt.

I also know that Amy is a good sport who takes the ribbing in the manner in which it’s delivered. Also, she’s wheelchair bound at the moment, so can’t catch me 😊

I’ve no real idea as to what the weekend will bring, it will depend heavily on the weather and how I’m feeling. The Rams 1^st XV are making the relatively short hop to Chinnor on Saturday, a fixture I’d normally drive over to in just under an hour. I like Chinnor rugby club. Last year we were over there for a returning students match. The barman noticed I was struggling somewhat with my voice and instead of the usual “Heavy night was it?” quip, he actually asked if I’d had it seen by a doctor. Some rugby clubs in the locality can be known for serving “Home” supporters first at the bar, I’ve never had that problem over at Chinnor. We may not be best of friends on the pitch, but after 80 minutes that should all be forgotten over a pint.

As always, thanks for reading.

To be continued………

#Shoulder2Shoulder 

PS - Did I mention I'd had man flu? 

Hi Ho, Hi Ho, It’s Off To Work We Go……

(Or not as the case may be…..)

As I suspected Saturday was quite an emotional day. Carol and I were guests for the pre-match lunch as Rams took on London Irish Wild Geese. Funds from the lunch were being donated to the Berkshire Cancer Centre. The club Chairman, Andy Lynch

made a great speech prior to kick off explaining the background to #Shoulder2Shoulder and the reason I’ve been trying to raise funds. Overall the lunch raised nearly £400 in cash and with sponsorship and additional donations the final total was rounded up to £1,000. Still a long way to go to pay my bill in full, but every little helps. The game produced a resounding victory for Rams against a very poor LIWG team who seemed more intent on arguing with the referee than playing rugby. I was taking pictures on the day, but was slightly marred by poor weather conditions and getting into a silly, ongoing argument with one of the LIWG officials, well I presume he was an official. I again underestimated how tiring I’d find being on my feet for a couple of hours would be, especially when you factor in getting soaked to the skin. By the time we got home I was pretty done in and in need of some sleep.

To celebrate going back to work I’ve booked 7 nights on Gran Canaria for Carol and I at the beginning of November, by that time I’ll have worked around 6 weeks, so a break will probably do us some good. We’ve not been to GC before, but the hotel reviews look good and the weather, whilst not being scorching, should at least be warm. I’ll have to be careful with my stoma, as getting fine bits of sand into it might be an issue. Maybe a natty little cravat to wear on the beach 😊 It’s the same hotel group, Barcello, that we’ve used for the past couple of years and I’d managed to gain some discount points, so booking direct at half board saved over £1000.00 rather than booking B ‘n B in the same hotel with a package company. Initially I wasn’t going to book half board and we do like to get out and try local restaurants when we’re abroad. However with my current challenges of eating perhaps an evening buffet where I can have as little or as much as I want makes sense. If things are going well we can always eat out if we want to. “Tapas for two senor?” Having read up a bit now on Playa Del Ingles it would appear to be a bit livelier than Correljo on Fuerteventura. Maybe we’ll end up going out clubbing every night to the wee small hours, get up at lunchtime, have a full English before finding the nearest Irish Bar to wile away the afternoon…….

This was always going to be a difficult week. For the past three months I’ve been my own boss with only one major task ahead of me, to get better. Now I’m back having to get up with the alarm each morning and being at my desk first thing. It will take some getting used to and in the early days I will still be having an afternoon nap if needed. So, after 12 weeks, it’s back to the grindstone. I was reflecting on Tuesday about the past 3 months and where I find myself now. I’m about 10kg heavier to start with, which is a good thing. My 32” trousers are beginning to feel a tad on the tight side. This really is the next stage in the recovery process. I’ve been through the operation, hospital recovery and then finally home convalesce. I think that prior to going under the knife I was a bit naïve about what the future would hold. Pain levels have been far, far lower than I suspected, and I’ve still got a large jar of morphine unopened if anyone wants to buy it from me? 😉 But the impact of losing my voice box is much more damaging than I initially thought it would be. My voice, whilst stronger than before the op, sounds like a slightly deranged cartoon character and will never sound the same again. I have the social problems of having to clear out my stoma in public at times. It’s quite an embarrassing thing to have to do I’m afraid. Life has changed massively over the past three months. No longer can I just think I jump into the car and pop into town or wherever else. I need to make sure I’ve got my supplies of tissues, base plates, lary tube, HME’s, torch, cleaning pipe, etc……. If I don’t have that little lot with me and I need any one of them then I’m going to struggle. I saw all to clearly on our trips to Cornwall and to Lincoln that I’ve got to plan trips far more carefully than I did in the past. I can no longer think that I can spend the whole of the weekend on the side of a rugby pitch taking photos. If I do then I’ll pay for it the following couple of days. The chances are I’ll never get the full movement back into the right shoulder, despite the very best efforts of Vikki Styles and her wonderful physio. I guess that means that my dream of being a pace bowler for Yorkshire is well and truly scuppered once and for all. As was my dream of swimming with dolphins (That’s made up, but I still won’t be able to do it). It’s looking unlikely that I’ll ever be able to eat red meat properly again, unless it’s minced. However, I’m probably eating a far healthier diet than I have for a long time. Lots of fish, pasta and vegetables have replaced steaks, curry’s and pies. I’m also eating hardly any bread at all these days.

I’m not sure where the 12 weeks have actually gone. I had plans before the Op, to get a number of things done in the time off. I’d hoped to get a photography website set up, failed. I’d hoped to get the garden patio tidied up, failed. I’d hoped to cycle every day, failed. I’d hoped to complete the vast majority of the next book, failed. I haven’t spent that much time on NetFlix or Amazon Prime, I haven’t spent all day watching TV, the days just seem to have vanished in a puff of smoke. Five minutes ago it was June and summer was approaching, now it’s mid-September and the leaves are about to fall off of the trees.

But, and this is the important one, the one that outweighs all of the negatives above, I’m still alive, and thanks to the skill, dedication and commitment of the NHS I’m likely to stay that way for some time to come yet 😊 I’ve also decided that falling asleep holding hands with the woman who puts up with my various moods is rather a pleasant thing to do.

Wednesday morning started off just as I expected it would. I wasn’t able to access any online programs on my laptop or my iPhone as my account had been deleted as I had been off for more than two months. I can understand from a security point of view why this had to be done, but I would have thought that some half way house short of deleting my profile could have been agreed. It’s not like I’m the only person in the company who’s been on long term sick leave. There was nothing that I could do to resolve the position, so I left in the capable hands of my boss. Apparently the SLA for getting my access back could well be up to 3 days and I may need to go into a Head Office site to map drives and get initial access, deep joy.

I spent the time tidying up my office from all the rubbish that had been dumped in it over the last few months whilst I’ve not been using it. My medical supplies and Ensure drink stock was sitting on my desk, it’s now fairly well diminished and I’m in two minds whether to get another prescription written. I actually quite like the drinks and whilst I no longer drink six a day I’m still averaging probably three a day. I find them useful to put in a ruck sack if I’m out and about as I can’t always guarantee to find food that I can easily eat.

My final tasks for the morning were to sort of the car parking and travel insurance for our holiday in November. The car park was easy, Valet Parking at Gatwick North Terminal, painless and quite cheap compared to parking in the summer time. The travel insurance was more problematical. I first tried Insurewith who are specialists in insurance for people with pre-existing conditions. I’ve used them in the past when we went to Corfu following completion of RT and Chemo. My previous insurer, Lloyds had quoted my over £600 for the 10 day trip, I went ballistic with their profiteering attitude, Insurewith came in at £100 from memory. When I was trying to get a quote from them this time I found the website a nightmare to navigate around. Then there was a question regarding my stoma which just didn’t have the correct drop down option box. I tried calling their helpline but after holding for nearly 30 minutes I just gave up. My next attempt was with Saga, a far easier website and a quote of £100 which I’ve snapped up. So, now all I have to do is sort out some Euros and we’ll be all set to go. Current rate of around 1.03 to the pound is painful. Two years ago when we were in Corfu we got 1.46 to the pound ☹

Thursday morning was another day with no system access for my work laptop, although I’ve been advised that progress is being made. As Carol doesn’t work on Thursday’s there was no need to get up early. Emerging from the bedroom at 8.45 is nice in some ways, but in others it’s not so good. It’s taking a good 90 minutes each morning for my throat to settle down when I get up. This means I usually leave in the Lary tube as it’s slightly easier to clear out the gunk with the tube in rather than if I’m wearing just a base plate. The downside is that I’m now finding it increasingly difficult to talk properly with the tube in for some reason. It’s also becoming quite painful as the tube feels as if it’s pushing down onto the back of my throat. I know it can’t be doing that, but that’s the way it feels to me.

I was wasting a few minutes on Thursday morning by looking at the Rams Twitter feed when I noticed this picture that the Wokingham Paper had used for it Sports supplement cover. I think this is the first time one of my shots has been on the cover of a paper.

As a club we’re now supplying photos and match reports to two local papers, they’re happy to credit either Tim Pitfield or me with the credit for the shots, although they don’t want them watermarked which I guess is understandable. It’s a long cry from the day when one of the other local rags used to pinch, word for word, our match reports and credit them as their own, they also started using my pics without credit too which pissed me off big time. Nowadays that rag is entirely online with no print version at all. The only “Local” rugby they now cover is news from London Irish, not sure what they’ll do once they bugger off back to London next season or the season afterwards. A couple of seasons ago we’d have two or possibly three photographers down at OBR for home matches. Slowly but surely the staff photographers were got rid of and the papers relied on enthusiastic amateurs for their pictures. In some ways this has benefitted me and gets a bit of exposure for my shots, but in others it’s a real pity for the staff photographers. There was one chap who lurked around the club for half a season or so, claiming to be an official press photographer. I had my suspicions and without being a kit snob there’s no way a press photographer would have been using the camera / lens combination that this guy was. He was also forever getting in the way of the officials of both sides on the side of the pitch which suggests he hadn’t got a clue what he was doing. It took me a while to realise that it’s the same bloke who I’d had a run in a few years previously when he was taking photos at an event I was also at. He was appoached by Security who were concerned he’d been taking pictures of children and he gave them my name! I was only saved from having my collar felt by the testimony of a number of people at the event who knew me from old. It’s strange, as when I mentioned this to the “Official Press Photographer” he suddenly disappeared and hasn’t been seen at OBR since that date.

I had my monthly ENT meeting on Thursday afternoon. 3.45pm really is a crap time for an appointment, that’s getting on to the back end of the list which means it will almost certainly be running late, which would have the knock on effect of meaning I hit the Reading rush hour traffic on the way back home. But for once I was in smack on time to see Mr More Scary then Scary for the first time in ages. He was his usual business-like self and got straight to the point with no frills. He’s happy enough with the way the stoma is settling down but was concerned that the Lary tube was causing some trauma to the wound. He was surprised that I was still using the tube at night until Caroline the SALT explained to him that I was just following her instructions. He’s asked me to leave the tube out for a couple of weeks when he’ll see me again. I’m quite happy to follow this instruction as I mentioned above the tube is becoming pretty uncomfortable to wear for any length of time. I was under the impression that I’d been told I’d have to wear Lary every night for the rest of my life, I guess I must have just misheard. It does put my slight panic of forgetting to take Lary to Lincoln into the shade really. We discussed a slight issue I’ve been having the last week or so where I’ve been getting a stabbing pain on and off from one of the scars going down my chest. He’s not overly concerned about it, but has suggested if it continues then he’ll send me for a scan to make sure it’s not a nasty. His advice is that if something changes and it’s not for the better then I need to let the CNS Nurses know without delay. I refrained from saying that my last two emails to the CNS Team have gone unanswered ☹ Caroline supplied me with some more skin glue and extra sticky base plates as my order from Countrywide hasn’t come in yet. So, as soon as I got home I glued myself up, stuck on the new baseplate and slid in the handsfree unit.(It lasted about 2 hours until I sneezed without having time to remove the filter and it shot across the room!) I feel so much more confident not having to press the HME to speak, it does take a bit of practise and I need to make sure I’ve got the valve in the right place to enable the breath to be the correct pressure, but practise makes perfect. I’m looking forward to trying it out on some likely suspects at the weekend.

I posted a FB update lamenting the departure of Lary on Thursday evening which prompted a message from Don, the chap who’s been going through the same procedures, with the added bonus of RT and Chemo thrown in for good measure. We tend to chat online now once a week just to check in with each other. He’s now five weeks into his six week treatment and seems to be baring up really well, somehow or other he’s managed to gain weight, his wife must be one heck of a cook as by his stage I was down to skin and bones. I find it quite cathartic having a chat with a fellow sufferer, one who’s been through exactly the procedure I’ve undergone. It’s only a couple of weeks until I have my first meeting with the Reading Lary club, a whole bunch of us who’ve been through the same procedures. I’m currently reading a book called The Owl at the Window by Carl Gorham. It tells the story of the author and his wife going through their own battle with cancer. In places it’s rip roaringly funny, in other places it’s tear jerkingly sad. Her cancer wasn’t related to the head and neck, but the treatments, feelings, fears, hopes and scares are all too familiar. So, whilst at the Lary club we all have something in common, it’s also the same for anyone undergoing any form of cancer treatment. We’re all able to share our experiences and offer a word of help, advice or even chastise if necessary. I know in my early days of treatment back in 2016 I needed a good friend to give me a kick up the backside a few times when I was acting even more like an idiot than usual. I also took great comfort from chatting to another friend who was a good 18 months further down the treatment timetable than I was. He was able to give me great advice relating specifically to how my head was going to be screwed to pieces at times, and to take time before I made any major decisions or said anything that I might regret to those close to me. It didn’t always work, and there were times when I probably hurt those closest to me without even realising it. It’s so easy to draw yourself into your own little bubble and not see the bigger picture. A diagnosis of cancer or any major illness has a massive effect on a person individually, but it also has the knock on effect on family and friends, that’s what is so easy to forget. I’m rambling a bit here. I think my main point is that being asked to talk to one person and to see if I could help them has piqued my interest in what I may be able to do to help other people going through cancer. I’m not medically qualified, and I’m certainly not a trained counsellor but I like to think that one of the skills I’ve learnt for my job is that I can talk to people quite openly across all walks of life. So, I’ll be speaking to someone at the hospital to put me in the right direction to be able to channel any skills I may have.

Friday was another day of no system access on my work gadgets, seems like the three day SLA is being lived up to in its entirety. At the time of publishing I've been advised that my access has been reinstated. Hopefully on Monday morning I'll be up and running, however I suspect there will be a few more hoops to jump through before everything is back up and running. 

Another weekend is on the horizon. I’ve decided against going to Worthing to watch the Rams play as a full day out isn’t what I need right now. Instead I’ll be up at OBR to watch Max and the Mighty Cents take on Henley RFC in a top of the table clash. Hopefully, as the Cents are the only team at home, they'll get the chance to use the newly decorated changing rooms - 

I’m trying to work out how to resize the opening photo on the blog so don’t panic J

As always, thanks for reading.

To be continued………

#Shoulder2Shoulder

Family and Friends.

A busy weekend of rugby and photos meant I was fairly knackered by the time we got to Monday morning. On Saturday I caught the train over to Twyford to meet up with Shaun and Neil for a quick pint before heading off to meet Owen and Graeme and onto Henley for the big match of the day. Shaun had come prepared for the day, arriving with a dozen of Waitrose’s best doughnuts! This photo was taken in Henley and is the Lad’s ‘n Dad’s. Graeme, Owen and Neil, with their respective offspring, Liam, Ben and Conor.

 The first thing we have in common is that all of our sons were in the same year at school and all played for Redingensians RFC. We’ve all watched our lads grow up from snotty nosed little kids, into the brilliant young men they are today. We’ve had our run in’s over the years, as you’d expect from any group of friends, probably makes us stronger. Max would have been in the picture however he was over at Tadley RFC playing for the Mighty Cents and getting his first try of the season in his first game of the season. It usually takes him until December until he troubles the scorers. Graeme was the person who initially came up with the idea of #Shoulder2Shoulder and was one of the first people I told about both of my diagnosis. He’s a great leveller and his advice over the years, on numerous subjects, is something I actively seek, and tend not to ignore. Owen and Neil have also been there for us as a family throughout the last couple of years especially. Having mates that you know you can talk to about the most difficult of subjects is invaluable. The day out in Henley was just what I needed, with one vital element missing, a win for the Rams. From 24-10 up at half time we somehow managed to concede 18 unanswered points in the second half to lose. However, the light was wonderful so I got some cracking photos. The company was equally as good, and the beers flowed.

Sunday was a different day as far as the weather was concerned, it was damp, miserable and by the afternoon, bloody cold too. I was over at Reading RFC to take photo’s of the Rams Sirens, resplendent in their new kit. The match was marred somewhat by an injury to the Rams player Amy who broke her leg and dislocated her ankle early in the match, that will probably be her season over which is a real shame as she’s been a real driving force behind the success of the team. I only managed to get a few shots prior to her injury, including one cracker showing her determination. Once the team has moved pitches I packed my camera equipment away, I’d lost my appetite for photography for the day.

I had really been looking forward to the beginning of the season, for the last 14 years or so it’s been a highlight of the year. By Sunday evening I was totally done in. I’d pushed myself a bit too far with two consecutive days. I think getting soaked and cold on Sunday hadn’t helped matters either.

On Tuesday morning, we travelled up to Lincoln for Anna’s graduation, it was due to start early on Wednesday morning so it really needed an overnight stop as whilst Lincoln isn’t that far away (180 miles) it takes an age to get there. About an hour into the journey I realised I’d left my Lary tube back at home and it was a bit too late to turn around and get it. My throat was also playing up and I was having to clear out the stoma far too often on the journey. Not an easy task when you’re driving at 70mph on the motorway. Carol and I managed to sort a cleaning system out by the time we got to Lincoln, but it’s far from an ideal position to be in. Anna had sorted out the hotel booking and luckily had also provided a postcode for the car park at the back of the hotel, otherwise we’d probably have still been driving around Lincoln. Once we’d checked in I discovered I’d also forgotten to pack any extra base plates for the stoma and would have to manage on just two. This wasn’t clever at all and I was contemplating driving back home to get the Lary and additional plates. Carol was far more sensible and phoned Lincoln Hospital ENT Dept. who confirmed they’d be able to supply me with base plates if necessary. As well as booking the hotel Anna had also booked a restaurant for 12 of us for a meal on the Tuesday afternoon. Her boyfriend, Tom, was graduating that evening so his parents were down from Yorkshire and Lanzarote. This was the first time we’d met them and a couple of hours in a restaurant, drinking wine and scoffing food was probably a good introduction to the Clark family.  

Anna being Anna had produced an itinerary for our two day stay, it was to the minute. As she was disappearing with Tom at 5.30 to attend his ceremony she’s actually written part of the itinerary as 6pm > 10pm “Clark party to entertain themselves”. So, we did, we went out and had another meal with more bottles of wine.

The hotel we were staying in was lovely, a nice room with a MASSIVE bed which I think had separate postcodes for each side, and a lovely, well equipped bath room. It also came with it’s own resident ghost. Or at least that’s what I thought when I woke up at 3am. There was a strange snoring sound coming from the room. Now, Carol had been known to be a bit Snorey McSnoreface, especially when she’s had a glass of vino or three, but this wasn’t her snoring. I was beginning to get a bit concerned until I realised that Max had been added as a last minute addition to the party and the hotel had managed to fit a small camp bed into the room. 3am turned into 4am and Carol decided she’d join Max in the “Let’s keep Paul awake by snoring” game. Oh that was a fun night.

We needed to be at Lincoln Cathedral by 9am on Wednesday morning, despite the ceremony not starting until 10.30am, so it was an early rise and shine for us all. Luckily the hotel had agreed I could leave the car in their car park until 3pm that day, otherwise it would have been a game of hunt the car park space. Sleeping without my Lary tube in meant I was on the final base plate and my throat was playing up big time. The previous day I’d used 7 HME filters, I was already on filter number 3 before leaving the hotel in the morning.

The location for the graduation has got to be up there with some of the best in the country. The students met first in the grounds of the castle to get their robes on and then make their across to the cathedral for the actual ceremony. We were duly seated in the reserved places that Anna had kindly organised and awaited the start with baited breath. Well, in my case it was with rasping breath. I’m glad that Anna’s surname is the same as mine as it meant she was through the graduation quite quickly as it was done in alphabetical order. I managed to get probably 75% of the way through before I had to make my excuses and go outside to give my throat a damn good talking to! A quick cup of coffee, two changes of HME and I was outside the cathedral waiting for the ceremony to be completed. Eventually I was joined by the rest of our party, made our way back over to the grounds of the castle and took the obligatory “Throwing Mortar Boards” up in the air pictures. 

There was one final item on Anna’s (timed to perfection) itinerary to complete before we were allowed to breath on our own again. She’d booked a table in a rather nice Tapas bar for us to enjoy our padron peppers, paella et al. I’m incredibly proud of what Anna has achieved, especially in the last 18 months or so whilst I’ve been a bit ill. She’s managed to complete her degree, get a great job and move back to Gods Own County with Tom.

The long trip back home was not quite as unpleasant as the journey up, but by the time we were home I was totally knackered again, my throat was all over the place and I was feeling pretty darned pissed off with life, the universe and everything. My first job was to get the Lary back in place using a fairly large dollop of lube and a quick shove. It went back in ok thankfully, but I’ve got to make sure I don’t forget it again when I go away, it’s not like you can just pop down to Tesco and buy a new one.

I had arranged to meet my boss up in London on Friday to discuss my return to work. I choose London specifically rather than Graham coming to me in Reading. Typically the trains out of Tilehurst were delayed at the last minute and it was a rush across platforms to catch the fast train up to town. I wanted to see how I’d manage with the stoma on public transport, and within 10 minutes of sitting on the Paddington train I needed to remove the HME and clear out my throat. There were a couple of looks from fellow travellers, but nothing too drastic. On the subject of clearing my throat, I’ve mailed the CNS Nurses to see if over time the amount of clearing will reduce, but at the time of writing I’ve not had a reply from them, I’m hoping for good news as it’s becoming quite tiresome and a degree, embarrassing, having to make a bit of a spectacle of myself in public.

Graham and I had a good meeting. The plan is that I’ll return to work on Wednesday, but in a very controlled way. At the moment my access to company systems, including my work iPhone are all suspended. We suspect it’ll probably take a couple of days for full access to be updated, so for the first few days it’ll be a case of getting systems back in order and doing some specific paper based tasks before I let my suppliers and customers know that I’m back, I didn’t die and I only lost a few body parts along the way.

I will happily admit that I’m nervous about going back to work. The first internal meeting is going to be a challenge, the first external customer meeting will probably be a bigger hurdle. I’m darn sure I’m not the only person in the Banking industry who’s got a Lary, but I’m the only person I know in the Banking industry with one, so if I want to be nervous I bloody well will be 😊

Saturday has the promise of being an emotional day. The Berkshire Cancer Centre is going to benefit from a fund raising lunch at Rams as they take on London Irish Wild Geese in the first home match of the season. I’m indebted to Chris Hodgson and Barry Jackson from the club for suggesting the fundraiser and to the club for agreeing to it. A rather moving, to me anyway, piece was written on the club website about the event :

We are using this exciting first game to raise funds with Paul Clark, our club photographer, for the Berkshire Cancer Centre. Paul has maintained his valuable support for the club whilst fighting the disease. The Berkshire Cancer Centre is specifically raising funds for a new linear accelerator machine. Paul was zapped 30 times by one of these machines during his treatment. He said "There were times when treatment was delayed whilst repairs were carried out on one of the two existing machines. The last thing you want when you’re ill and undergoing treatment is delays. A new machine will help all those people who undergo radiotherapy on a daily basis. It will also help the wonderful staff. My initial treatment came in at around £15k or thereabouts. You can probably add on £100k at least to that total following my stay at Churchill Hospital."

I’m sure I’ll find the lunch emotional, anyone who’s read this blog for any length of time will understand how much Rams mean to the Clark family. The support and friendship mentioned at the start of his update emanated from the Rams relationship. It will continue.

As always, thanks for reading.

To be continued………

#Shoulder2Shoulder