I Want To Ride My Bicycle ……. I Want To Ride It Where I Like

The weekend didn’t really start as planned. I had a really poor night with sleep being difficult due to problems I was having breathing. I eventually removed the HME filter from the Lary tube to try and get a decent airway (Note to other Lary patients – THIS IS NOT RECOMMENDED!) The plan had been to go over to Nino’s to celebrate their 4^th birthday in Pangbourne, and probably have lunch there too. However I was just not up for it. By 11am I’d been through two T-Shirts and 3 HME filters, I was having to clear the Lary tube every 20 minutes or so. I was feeling well and truly pissed off with things. In the end, we did pop into Pangbourne very briefly and had a slice of pizza with the two Nino’s and Ms Nino. But even then, I could feel my throat contracting and wanting to cough so we left after about 10 minutes.

On Saturday night we were due to meet up with a mate that I hadn’t seen for possibly 20+ Years. Tim had recently come back to the UK after spending time in South Africa and more recently the Far East, he and his wife are renting a property within spitting distance of us, so we planned to meet up in a local pub for a couple of pints and a catch up. I’m afraid I had to bail out as I just wasn’t feeling up to going out and wouldn’t have been able to talk properly without the need to cough and clear Lary out. Tim will be back some time in October, so by then I should be far fitter and more up for a gallon of ale!

Tim and I first met when we were both working for Security Pacific, an American bank who had their UK Head Office along the Kings Road in Reading. Tim was a talented sports man, excelling at cricket and a fairly handy rugby player too. In those days Sec Pac had an annual “Head Office” vs “Braches” match at rugby, cricket and football. The cricket and football matches were usually good natured affairs, the rugby was banned after two fixtures by the MD as he didn’t think employees trying to knock each others blocks off was good for staff morale.

We had a fairly decent cricket team as a company and played against various other local companies in friendly matches in the evening after the working day was over. One of the regulars and stars of the team was a chap called Martin Smith who sadly died in a car accident. He played cricket for Woodcote Cricket Club who organised a memorial “Sixes” tournament in Martin’s memory. The Sec Pac team were invited along to take part. Tim was a key member of that team as a big hitter and decent enough bowler. He showed up the morning of the match and could hardly walk due to a pulled muscle. The other teams were gallant enough to let Tim bat with the aid of a runner, namely me, he took great delight in hitting the ball all over the park. Woodcote is a pretty large ground, and my abiding memory of the day was running numerous three’s and being totally knackered whilst Tim leaned on his bat smiling!

I’m looking forward to catching up and having a good chat about old times, but I need to be well enough to do the evening justice.

Sunday was a far more positive day. As the sun was shining I decided to make the most of it by going for a cycle in the morning. Not too far, probably about 10km in an hour, so a nice gentle pace, but I can feel the heart beating a bit quicker which is the whole point of exercise for me at the moment. One after effect of the operation that I hadn’t thought of is that my neck area has changed shape quite dramatically. My helmet just about fits at the moment, and should be ok once the throat swelling has gone down but is quite tight and constrictive at the moment. I’m loath to go and by a new helmet with longer straps at the moment, but equally I won’t cycle without wearing one. I suppose like most of us, when I was a kid I used to cycle all over the place, I never wore a helmet, reflective jacket or any other safety equipment (apart from bicycle clips when I rode to school!). The roads I suppose weren’t anywhere near as busy as they are these days and perhaps drivers had a little bit more respect for cyclists than they do now. I spoke via FB to a friend who’s currently down in the Padstow area and had cycled the Camel Trail with his family. His advice is to make sure you pre-book your bikes, so we’ll check the forecast and try to pick a half decent day. I’m quite looking forward to a gentle ride along the estuary, and there are watering holes along the route too. I know I’ve said this before, but I do really want to start cycling more often. My legs might be knackered, I’m not very fit, I’m getting old, but cycling is something I reckon I can do and can only help my physical and mental recovery.

I decided to do a full roast dinner for the first time since before I was cut to shreds. It was whilst stuffing the chicken with a mixture of herbs that I had a very strange sensation………. I could vaguely smell the thyme and basil I was using. I’d been told that it was unlikely I’d ever get me sense of smell back again so to just get a slight whiff was great. I spent the rest of the afternoon sniffing my fingers whilst watching the English Roses beating Italy in the Womans RWC. Regular readers of the blog will know how much I enjoy cooking. When I had the Chemo and RT in 2016 I lost my sense of taste completely and struggled to eat properly until it slowly returned. Losing smell isn’t quite as tough, but there are times when I’m cooking that I could really do with knowing if something was catching or if I needed to add a little bit extra of something. If this little gain is showing that possibly the sense is coming back then I’ll be a happy bunny.

There was one final small win on Sunday. I decided to wear a base plate rather than my Lary tube from when I got up in the morning, and wore it the whole day until bed time. Putting the tube back in to sleep wasn’t a problem, albeit I needed a little bit of lube to slide it in. It’s so much easier to speak with just the base plate, it’s also more comfortable and less invasive. On Saturday I was replacing HME filters like they were going out of fashion. On Sunday I went through the whole day with just the one filter 😊

Looking at the weekend in the round I reckon it was better than the average bear. Yes, it would have been good to go out on Saturday night, but there will be other nights. Teddies got thrown for no apparent reason on Saturday, but they bounced and weren’t broken and lessons were learnt. Sunday was a step in the right direction, a small step, but still a forward step. One thing I did learn though was that if you have a knackered shoulder then it’s a really stupid thing to try and overarm bowl a tennis ball – OUCH!!!!!!

Monday started with my now usual trip to Mad Hatters for a coffee, but this time instead of walking up to the village I incorporated the caffeine stop into my cycle route. I think the staff are getting used to me now, even if they may have been a bit surprised to see me turning up wearing shorts, tight shirt and a helmet!

I received a mail back from the CNS Team at RBH regarding my concerns about the solid lumps on my chin, it seems as if it’s quite common and nothing to worry about. If I am concerned they suggested contacting my GP, and wait 8 weeks for an appointment.

We’ve got the house pretty much to ourselves again this week. Max got back from Hamburg last Friday, worked Saturday, Sunday and Monday afternoon and promptly disappeared to Wales until Wednesday night with Laura. She’ll also be coming down to Cornwall with us next week for part of the holiday which will mean that Max won’t have to hang out with the “Oldies” for the whole week. Maybe we’ll get a bit of time to ourselves too.

We’re hoping to go abroad either towards the end of September or early October so I thought I’d better look at travel insurance bearing in mind my latest trip to the hospital. When I tried to do this task originally I called up my then travel insurers, Lloyds, who quoted over £600 for a single 10 day trip to Corfu, they just weren’t interested in covering anyone who mentioned cancer. I eventually insured via a company called “Insurewith” who specialise in covering pre-existing medical conditions, they charged me less the £100.00 for the Corfu trip. I’ve since used Saga who were even cheaper when we went to the Canaries and have come in at £122.00 for a 10 day trip later this year, which considering the surgery I’ve had and the potential for something to go wrong I don’t think is too bad at all.

I spent an hour or so at OBR on Monday evening at a meeting to discuss the various social media accounts the club runs. For my sins I’m the webmaster of the main site for the Rams http://www.pitchero.com/clubs/redingensians I also help to run the FB  https://www.facebook.com/Redingensians/ and the Twitter accounts too https://twitter.com/Rams_RFC The point of the meeting was to see how we can make the most of the platforms we use and to increase our audience. Any “Follows” or “Likes” would be appreciated. As a start off it served its purpose, with more work to be done prior to the start of the season. Whilst at the club I was having a chat with the 1^st XV Head Coach who I’ve known for a fair few years, indeed going back to the days when he was still a player for the club 

 He was asking how I was getting on and the conversation eventually moved on to how I can actually speak now. I tried my best to explain how the air is diverted up through my valve which in turn is turned into noises but I’m aware that this isn’t really a good explanation. For the blog after I’ve got back from Cornwall I’ll do some real research and find an “Idiots Guide” of how to talk with a Lary, if nothing else it’ll help me understand, at the moment I’m still of the opinion that its some form of Cat Fagg Black Magic!

Tuesday’s pattern followed the norm now. Up, breakfast, bit of web surfing and then off for a bike ride with a coffee break halfway through. I managed to miss the (Daily) Amazon delivery whilst I was out and eventually found the package behind the dustbin. I’m an honorary “Uncle Paul” to a friend on FB who lives down near to Portcothan, and we’ll hopefully be meeting up for the first time next week. So I thought I should buy Sydney a present to take down with me – 

Sidders is a rather handsome Jack Russell in case you were concerned as to my choice of gift. He has the wonderful gift of cheering all his honorary Aunts, Uncles, HAGs etc up with his antics on the various North Cornwall beaches.

There was a pleasant interlude to the day with a visitor from OBR arriving for a chinwag and cup of tea for an hour or so. I’m very conscious that if I’m at home all day by myself that I may not actually use my voice, so having someone to talk to is excellent exercise and I only really needed to clear my throat out the one time which I recon is an improvement. Matt showed me the draft of the new Rams Seasons Guide which features a number of my photos which is always pleasing to see. This year they’re credited to s2s Photography rather than to Paul Clark. Again, when I’m back from Cornwall I’m going to get some polo shirts printed up with the logo. It may seem a tad egotistical but I’m quite proud of the shots I’m taking and editing at the moment. It’ll never pay the mortgage, but it gives me a bit of pleasure.

I had a conversation with Don (fellow Lary) over text during the day, we’ve had to cancel the coffee planned for Wednesday, but will probably meet up later in the month. It’s comforting being able to talk to someone who’s been through the same procedure as me and so recently. I was asking him about ordering supplies and specifically the way his valve is behaving. Mine has started to spin round like Linda Blair in the Exorcist, but apparently so is Don’s and he confirmed with his speech therapist that this is normal. It should last somewhere in the region of three to six months and can be replaced quite easily, but I must admit that due to the position of the valve I’m a tad concerned at the first replacement. Don’s started his sessions of Chemo and RT this week and I hope I was able to give him a degree of comfort as to what he’ll be facing over the next few weeks. It won’t be easy for him, but I get the feeling he’s a pretty strong character and will get through it alright with some support and care. Coincidentally I received my first monthly call from Countrywide, the company who supply the bits and pieces I use daily on Tuesday afternoon to take my order for the next month. I was really impressed that a) they could understand me over the telephone and b) that they knew what to suggest I might need instrad of just what was on my last prescription. For instance, I was supplied a shed load of bibs, of which I’ve used two, so we haven’t bothered with any more of those, but she did suggest adding on barrier cream and adhesive removal cream to help cleaning up the wound, especially as I’m now using the base plates on a daily basis.

Wednesday was pretty boring, a quick trip into Reading to see if I could get Carol a birthday present (Failed miserably – what do you get the woman who’s got nothing?). A couple of hours spent cleaning up the membership database of the Rams website as it had been hit by a load of “Bot” memberships somehow or another. Other than that I relaxed for the day as I was feeling a bit jaded for some reason. I was also getting a little bit nervous about my meeting at RBH on Thursday. It’ll  be the first time I’ve seen the old team since the operation and I’m not really sure what to expect. I’m guessing that one of them will decide it’s still a good idea to stick a camera up my nose. I’m hoping I’ll see the speech therapist just to confirm that my valve is still secure, and I’d like to see one of the CNS Nurses just to discuss some concerns I’ve got on my mind, but we’ll see how busy it is.

The highlight of the day was probably when Penny bought in a very live mouse to play with, it was last seen running down the cabling hole behind the fire place (The mouse, not Penny). This ensured that the stupid cat spent the rest of the night looking at the small hole intently hoping that the mouse would be stupid enough to stick its head back out.

Earlier in the week I was having a chat with a friend when the word “Flaccidity” was brought up (In an entirely innocent manner) and it reminded me of years ago working at Avco Trust in the Timeshare Finance Dept (It was every bit as crap as it sounds). To enlighten a very boring job we came up with the idea of the “Phrase that pays” which involved getting either a phrase or a word into a conversation over the phone with a customer. The one I remember vividly was Reindeer. I can’t quite recall who actually won, but I think it was probably Jools. The conversation went something like this :

Jools > Good evening Mr Smith, it Jools from Avco here, how are you today?
Mr Smith > I’m good thanks.

Jools > And what’s the weather been like down in Southampton?
Mr Smith > It was a lovely day thanks, what about with you in Reading?

Jools > It’s nice now, but it rained here earlier…………

Cue the whole Dept. rolling on the floor with tears of laughter rolling down their faces!

So, I’ve now been challenged to get “Flaccidity” into a conversation. As I was having my follow up meeting at the RBH on Thursday I thought that would be an ideal chance. “I’m having trouble inserting Lary into my hole due to his flaccidity and I have to use lots of lube”

Thursday was a massive day for so many people with A Level results released across England. I saw a very good post on Facebook from a friend.

“A level results day. As long as you've honestly tried your best, that's all that can be asked for. 
You are all beautiful young adults with a full and exciting life ahead of you. Be yourselves, you don't have to change who you are in order to fit in the box others have created for you. 
Live life to the full remembering just one thing- do no harm to others” 

There is so much pressure on young people today, they’ll feel they failed if they don’t do well at their exams, forgetting that life is the long game. Happily Max, at the second attempt which proves my point, managed to get the grades he needs to get the TA’s role that he wants for 12 months prior to doing a bit of travelling. I sometimes wish I’d taken that option too all those years ago, a bit late now I guess. Max worked his backside off this last 18 months after making a bit of a mess of things first time off. But he’s grown up a lot in that time, partly due I think to having to watch his dad go through a rough time.

I rocked up to RBH about 40 minutes before my appointment was due, quick coffee, walk around the block and then settled down to see how late it would be this month. After 30 minutes of waiting I was called in to see Cool Dude who was the one to break the news that the cancer was back again. He seemed quite happy with my progress and confirmed that the swelling around my throat is nothing to worry about as I’m still in the very early days of recovery. We also discussed the movement problems in my shoulder and he’s of the opinion that it down mainly to bruised nerves. Exercise and physio will improve the joint and nerve damage in time. I was hoping to have had my last “Up the nose and down the throat” examination, but oh no, he insisted on taking some photos for old time’s sake. He reiterated three or four times that we’re still at an early stage of recovery and I shouldn’t try to run before I can walk. Heavy lifting or heavy exercise are strictly out of the question for the time being. His eyebrows did a bit of a “Roger Moore” when I mentioned that I’m planning on going back to work next month, but hey ho!

It was then off to talk through my progress with the Speech Therapists. They were also happy with my progress and the care I’m taking of the stoma. I’d mentioned in a previous blog about the possibility of using a hands free system to allow me to speak. There are two types which we played about with for 20 minutes or so, and the results were, to me, amazing! Not having to put my hand up to push in the valve made a huge difference, especially to my confidence. One of the systems worked better than the other, however they didn’t have any in stock to give to me, so an order has been put in. I’ve brought the other system home with me to trial out over the next few days to see if I can get on with it. It might only be a small step, but for me it feels like a small step back to normality. I didn’t manage to get flaccidity into the conversation, but I did manage a flaccid! When I was asking how the magic hands free kit actually worked Caroline explained that a flap is either open of closed depending on my breathing, when it’s in a closed position it flaps downwards, in a flaccid position is how I described it. I thought I did rather well not to laugh.

The busy Thursday continued with an early visit to OBR to take the head and shoulder squad shots of the Senior Squad to use of social media posts throughout the season. 36 players / support staff knocked off in one evening, hopefully the remainder will be done in the next couple of weeks. I was very pleased to be told that a good friend has sponsored the lunch at the club on 9^th September against London Irish Wild Geese. He’s sponsored the match in favour of Berkshire Cancer Centre, the charity I’ve been helping to raise funds for under the Shoulder2Shoulder banner. The pre-match lunches are usually very entertaining affairs, so I’m looking forward to this one. I’ve been in contact with the fundraising manager at RBH to see if anyone from the charity would like to come along to the match as a guest and give a short speech about the work they do and where the funds raised go to. Hopefully someone will be able to attend.

Friday was a day of cooking, packing, charging and trying to work out how much medical supplies I’m going to need to take away for a week. (A lot more than I originally though it would seem) Despite the fact that we’re not camping this year I still suspect we’ll be rammed in the car tomorrow. I really don’t want to have to put the roof box on, but knowing that Carol will probably try and pack the kitchen sink………

We’ll be leaving at silly o’clock on Saturday morning with a view to beating the traffic and being in Padstow for breakfast by 8am. The forecast for the week doesn’t look too bad, it won’t be the 30 degrees we’d be looking at in the Canaries, but there doesn’t seem to be too much rain forecast. So a week of walking the cliffs ,cycling the paths, playing on the beach and eating for the UK beckons. There will be a blog at the end of next week, and if I can get WiFi I’d imagine there will be the traditional holiday “Stalker” pics posted up on FB too. After that I’m not sure if I’ll continue the weekly blogging, I’ll decide over the next 10 days or so.

As always, thanks for reading.

To be continued……….

#Shoulder2Shoulder  

The Cheque is in the post……

(…… and other lies men tell)

It’s only now that I’ve reread last week’s blog, and the comments and support the words generated that I realise just how low I was feeling. The support from the cyber world was really appreciated and came from some quite surprising sources too. I should also have remembered that the blog is not only read by friends, it’s also read by family too. By my own admission I’m not very good at the spoken word, especially now when it’s quite an effort to make a spoken word come out, but I do write about everything, regardless of how’s likely to read it. So, note to self, when writing a depressing blog it’s probably worth letting the immediate family know what you’ve just published.

One specific piece of advice came from someone who I’ve learned to trust over the past 18 months, it was very simple advice, as the best usually is. It was “Just for today” which makes a huge amount of sense when you think about it. You can’t change the past, you can’t change what’ll happen in the future, so you’re left with today. Look back at the past, don’t stare at it. Have goals for the future, but don’t project. Do what you can today, sleep and repeat.

By my standards Saturday was actually quite productive. I mowed the lawn so that the sodding badgers have something to dig up at night whilst they’re looking for grubs. They always seem to wait until the night after the mow, no idea why. Last summer I was sitting on the patio one summer evening when I heard a noise coming from the lawn. A dirty great big badger was scrubbing around and making its way towards me. I’m guessing that it couldn’t smell me, and as they’ve pretty poor eyesight I stayed stock still to see how close it would come, and whose nerve would break first. In the end it got to within about four feet of me before turning on its tail and making off towards the bushes. What struck me was how big the animal was, I’m guessing from nose to tail it must have been pushing 3 ½ feet. The other abiding memory were the massive yellow teeth it possessed. A few years ago Penny came crawling back in through the cat flap very early one morning with quite bad bite marks on her body. It was touch and go as to whether she’d survive or not, and the vet suggested she’d been in a fight with most likely a badger.

Penny isn’t too happy with us at the moment. She had her annual trip to the vets and as usual she’s been described as overweight, so is now on a fairly strict diet, much to her disgust. She even jumped up on the cooker hob on Friday evening as I was making a simple and nutritious lasagne. We adopted Penny just over 2 years ago from a local rescue centre. Her original name was Tallulah, sorry but there was no way I was going out into the garden calling that name out in the early morning. So, we came up with a cunning plan to rename her. Her adoption coincided with Rams having the biggest game in their history against Exmouth RFC. If Rams won they’d be promoted to National 2 for the first time in the club’s history. The idea was that the cat would be named after the first try scorer for the Rams that day. Most of the players had names that could be shortened or adapted quite well for a cat’s name, I was just praying that Luke Flower wasn’t the scorer. In the end, it was a Penalty Try that saw the Rams get their first points on the board, hence the name Penny.

I digress, as well as mowing the lawn I also gave the car a bloody good hoover as it hadn’t been done for some weeks. I’m not entirely sure of the sense of doing it this weekend as we’re off to Cornwall in a couple of weeks and if the holiday goes to the usual plan I’ll be bringing back half of Portcothan beach back in the boot of the car. How old do children have to be before the lure of making sandcastles on the beach fade? I’m 55 this year, and I still want to do it 😊

Finally, to wear myself out for an afternoon on the sofa I made an industrial sized batch of Spanish Potato cakes to see me through lunch for the next few days.

Sunday was another upward curve day. Max was working early and then disappearing up to Evil Twins house ahead of an early morning flight to Hamburg on Monday morning with his girlfriend. Carol and I took the chance for a leisurely stroll around Reading town as the weather was good. I treated her to a new phone as her iPhone 4 was frankly an embarrassment to be seen with, so she’s now the lessee of a rather snazzy Samsung Galaxy A3 which will hopefully have a much better quality camera on it. We then decided to try and have a spot of lunch. 

The first time I’ve been out to eat since the op, so I was slightly nervous. We tried out The Real Greek on the riverside as mezes type dishes wouldn’t push me too far. Four dishes of calamari, lamb meatballs, salt cod and chicken were ordered, washed down with a bottle of pinot (Carol was driving so I had the lions share!) It went down really well, only one slight case of gagging which I managed to control without embarrassing myself in public. OK, it’s wasn’t Arillas on Corfu, but it wasn’t a bad substitute.  This small win has boosted my confidence ahead of our trip down to Cornwall in a couple of weeks, so on the return home I jumped onto the interweb thingy and booked a table for three at Rick Steins for Carols (55^th 😊 ) birthday on 25^th August.

As I’ve mentioned before, we’ve been going to Porthcothan for many, many years, but in all that time we’ve never cycled the Camel Trail which runs from Padstow to way beyond Wadebridge and utilises the old railway line that Beecham decided to get rid of in the 1960s. So, this year we’re going to hire bikes for a day and see how far we can get. I’m hoping there are a couple of pubs along the way to “Rehydrate” in. This will be the first years we haven’t camped under canvas at Carnevas since the kids were tiny. I’m quite looking forward to not having to queue to use the shower (apart from behind Max) and not having to walk across a damp field first thing in the morning for a wee. 

Sunday evening was vaguely amusing as it was spent largely watching Carol trying to work out how to use her new phone. I suspect we’ll have to wait until Max is back on Thursday to get it working completely.

Following the last blog update the total hits since inception went over the 50,000 mark which is hard to believe, and I’ve just gone over 100,000 words too. I initially thought It might get a couple of thousand views and 10,000 words.

I started the week with the plan to not sit on my backside watching TV all week. So, first thing on Monday morning I walked the 15 minutes to the Mad Hatters Coffee Shop in the village for a large cup of wake up juice. It might only be a little thing, but walking for 30 minutes in the fresh air is one of life’s small pleasures and it costs nothing at all. With my caffeine need sated I decided to tackle a job I’ve been putting off for the past couple of weeks. I get all my medical supplies for the stoma via a company called Countrywide Supplies, they seem to be the main supplier of bits and pieces in the UK. They call me each month to take my new order for kit that I need. So, I went through the 4 drawer cabinet I’ve got in the bathroom and made a list of exactly what I’ve actually got and what I’ll probably need in the next month. 

So, to bore you to pieces, here’s the list of kit that I’ve got at the moment –

·         63 HME Filters (I use about 2 or 3 a day)

·         90 Lary Clips (1 set a day on average)

·         1 Torch (For shining up my stoma when clearing the valve)

·         1 Hand Held Mirror (Works wonders for helping me to wipe up the gunk produced out of my new hole)

·         3 Valve Cleaning Brushes (They last about 10 days or so)

·         2 Puncture Dilaters (Hopefully never need to be used – if they are I’m advised to call 999 and ask for an emergency ambulance)

·         1 Shower Aid

·         3 Shower Bibs (Think of a babies feeding bib, but bigger and no giraffes on it)

·         20 other bibs of varying colours / designs (These are used to cover up the stoma from view, but I’ve found them restrictive)

·         43 Optiderm Base Plates (Use for 12 hours tops, and for sensitive skin)

·         4 Flexiderm Base Plates (Better adhesive, can be used for 24 hours – I can’t use these yet)

·         18 Laryngfoam Protectors (Used when you don’t want to wear a HME filter)

·         2 large packs of Wet Wipes

·         2 large tubes of lube to get Lary to slide down easily 😊 (Strawberry flavour)

·         2 spare Larys (Just in case………….)

I’m not going to need to reorder everything, every month. The main consumables are the HMEs, Lary Clips, Base Plates, and Laryfoam protectors. I know that the HMEs cost about £50 for a pack of 10, so you do the math as our American cousins would incorrectly say. I’m costing the NHS a fair bob or two at the moment, and as I’ll get free prescriptions for the rest of my life I’d better come up with some more fund raising ideas in the near future. You’ve been warned, your wallets will be attacked in the not too distant.

My plans to get into shape for cycling in Cornwall were somewhat knackered by it chucking down with rain all afternoon, what a wonderful summer we’re having, so I went to bed for a couple of hours listening to England starting to roll the South Africans over in the final test. The experience was only spoilt by having to suffer Geoffrey Boycott. He really is becoming an embarrassment to the BBC the older he gets. It’s time that he and Peter Allis were put out to pasture and to allow the younger generation to come through.

Monday night was pretty awful, I reacted badly to a dinner of burger, beans and chips and had real problems breathing with the HME in. So an early night followed sleeping without a filter in for the first time.

Tuesday had an interesting start to it. I needed to log on to my work laptop to retrieve an email I’d sent prior to going into hospital. I was slightly concerned when I charged up my work iPhone to see that it wasn’t recognising emails, and all Ap’s relating to work seemed to have disappeared. I then booted up the laptop to find that I couldn’t login to the remote access screens. This meant there was only one thing to do, phone the dreaded “Help Desk” and listen to the 25 different options before speaking to a human. Now in some ways this experience was quite positive as it was the first time I’d had to make any long phone call. It appeared that the operator on the other end of the line could hear me quite easily, even if I did forget to press my filter speak a couple of times. After a number of questions, five minutes on mute, and some head scratching it would appear that I’ve been processed as a leaver, hence not being able to logon. Oh well, I presume my redundancy cheque is in the post!

I spoke to my boss who eventually managed to get through to HR who advised that as I’d been off for more than 30 days my account was suspended until I was signed back. So, it seems I’m unable help out with anything until such time as I return to work. On that subject, I had an appointment with my Dr. on Tuesday evening as my current sick note had expired. He’s signed me off until 12^th September, however as I’m seeing the Consultant at RBH next week we can discuss in more detail the possibility of an earlier, managed, return if he thinks I’m up for it. He was also quite keen for me to explain how the Lary worked and how I was able to actually speak, not the easiest thing to actually explain to be honest, but I gave it my best shot. 

A rather pleasant diversion on Tuesday afternoon came in the form of a good mate dropping by for a coffee for an hour or so. I was good to just sit back and have a chat for a while, especially with the weather being so poor that I couldn’t really go out anywhere.

Wednesday was even worse as far as the Great British Summertime was concerned, rain, wind, more rain, more wind……. I feel genuinely sorry for any families who are holidaying in the UK at the moment, it must be miserable, not to mention expensive too. Last year when we were down in Cornwall just for four days we ate out most days, and it was rare to get change from £50.00 for a simple pub lunch for the three of us. At least this year we’ll not be staying in a tent which really limits your options if the weather is rubbish. In the past we’ve had some spectacular weather when camping in Cornwall, but we’ve also had our fair share of god awful stuff. There was year, prior to having kids, when we were at Carnevas in a small two man tent, that wasn’t overly waterproof, when the tale end of a hurricane hit the country. We ended up spending the night in my Fiat Strada whilst watching the tent flap around in the gale like a rag doll. The next day the tent was well and truly broken so we checked into the nearest pub and continued our holiday. This was the same pub as the infamous “Sink” incident which I descried in the book, but for those of you who haven’t read it, it’s worth another airing.

We’d used the Farmers Arms in St Merryn regularly over a number of years. It was a friendly pub with a good choice of ales and decent food. We were in there one evening enjoying a pie and a pint when I needed to use the facilities. On entering the gents I noticed the lights weren’t working, it appeared that the bulb had gone. Not a problem I thought, I know where the urinals are, so I unzipped, performed, zipped up, washed up and went back to join Carol in the bar. It was about 10 minutes later that someone came out from the direction of the gents and announced in a loud voice that “Someone had pissed in the sink……..” We left quite quickly.

I think I’d mentioned that Jo from the hospital had asked if I’d be prepared to talk to folk who’d either had or were about to have a Lary Op. I of course was happy to agree. On Wednesday I got a text from a chap we’ll call Don, who’s about the same age as me and had his Op. a few days before me, also in the Churchill. We were on Blenheim ward at the same time, however as I tended to keep myself to myself we can’t recall bumping into each other. Don has had a bit more of a tough time than me I think. Whilst he’s had the Lary Op and is now cancer free, he’s had far more Lymph Nodes removed than me which effects movement of the arms and he’s still to face the delights of Chemo and RT. He’ll be having 30 sessions of RT and 6 of Chemo, the same as I had early in 2016. It seems we may have a bit more in common than just happening to have had the same invasive surgical procedure carried out on us within days of each other. With this in mind we’re going to meet up next week for a coffee over in Twyford. If I’m able to give anyone a degree of comfort or answer any questions about what they may be going through or about to go through then I’ll be more than happy share my experiences.

Wednesday evening was frustrating to say the least. Max was still in Hamburg and Carol was due home about 6pm, so I’d planned a nice dinner, bottle of wine, touch of romance…….. well, when I say romance I mean I’d promised to stay awake beyond 9pm. The best laid plans were shagged out by the NHS! Carol eventually got home at 8.45pm. She’d been waiting with a patient for hospital transport to take him home. One “booked” transport refused to take him as he needed oxygen transported with him. Roll on when Carol can retire, the NHS will miss staff who regularly stay way beyond their contracted hours, do home visits without being paid for it, and go the extra mile every single day. So instead of a night of romance it turned into a “Knock the wine back quickly” type of night. The sea bass, pasta and mushroom sauce still went down quite well though. I suspect Carol was probably secretly pleased 😉

Thursday is now the new Monday in the Clark household as Carol has changed her day off in the week from Monday, to, you’ve guessed it, Thursday. The poor cat, who is still getting used to her new diet, was most miffed when one of us wasn’t up at 6.30am to feed her. She eventually barged her way into the bedroom around 9am, promptly jumped on the bed and made herself a pain in the backside until I persuaded Carol to get up and make me a cup of tea. It wasn’t the most productive day I’ve ever had if I’m honest, a bit of photo editing, a bit of writing, a bit of TV and a bit of reading.

As it was our last night to ourselves before Max returns from Germany it would have been good to go out for dinner, however I had another appointment at OBR with Vicki and her magic fingers. The shoulder is feeling a lot better, but another couple of weeks of manipulation will hopefully get it well and truly back on track so I can use it fully. When I first went to see Vicki two weeks ago I had pretty limited movement in my right shoulder. Tonight she was impressed by the improvement as I’m up to close on 90% movement which possibly isn’t far off as good as I’m going to get. Blimey, she gave me a good old working over tonight, explaining that as I’d improved so much she could really get to work on the muscles. I doubt very much that Vicki has ever had a Lary wearer as a customer before, but she’s known me for probably six or seven years now and was really supportive of all of us last year when I was first diagnosed. She saw me at my very lowest point when I was taken via ambulance from OBR to RBH before a 1^st XV match in April 2016 after I succumbed to the after effects of Chemo and RT, I’ll never forget the support I received from everyone at the club that horrible day. We have a simple system for these torture sessions, if it hurts too much then I double tap the massage table, to date I’ve not had to do it, been close a couple of times, but I’ve been a very brave boy. I’m sure I’ve mentioned before that I’m lucky to be able to access the Physio’s services at Rams. I’m pretty sure the NHS do offer some sort of service, but it won’t be anywhere near as comprehensive as Rams offer.

A slight concern that both Carol and Vicki have identified is that the scaring on my lower chin has started to “Lump” and become very solid. It could well be that it just needs draining as I’d been warned this could happen. Vicki and Don suggested that I mail the CNS Nurses for their opinion as to whether I need to go into clinic before my appointment next Thursday, hopefully it’s not anything to be too worried about. (At the time of publishing I've not had a reply from the hospital - guess it's holiday time!) 

Late Thursday night was traumatic. I was lying in bed reading a book and I got to the end of it, rather a good book too (Mud, Sweat and Gears by Ellie Bennett) I flicked back to the menu in my Kindle and had the stark realisation that I had no more new books to read! Perhaps for the first time in about 4 years my Kindle was empty. I read almost every night before turning the light off, it may only be for 10 minutes or so, but it’s part of my routine. I was given a couple of “Real” books to read when I was in hospital so I’ll read those before downloading my next batch of Kindle books. Any recommendations gratefully received.

I finally got the bike out on Friday as it was quite a nice day and not too blowy, after messing about with the front derailleur for a while to get the damn thing working it was off for a jolly ride around Tilehurst. Not sure how far I went, but I was pretty knackered when I got back, but another step in the right direction, my first bike ride with Lary in place. 

Max eventually arrived home from his jaunt to Hamburg on Friday, seems a good time was had by all. No sooner was he home than he was off out again staying at Laura's and dog sitting for the night. 

Max is the one in the blue suede shoes (and that is a dog, not Laura!) 

It's quite amusing as I've been seriously thinking of getting a dog from the rescue centre. One way or another when I go back to work I'll still be based at home so it wouldn't be by itself all day. My only concern would be how would Penny react to having another four legged animal in the house? Perhaps a bit more thinking is required on the subject and it's certainly not something I'd do as an impulse. It was fun to play around with the mutt for a while, but I didn't have to pick up any mess, or take it for a walk in the park. I did try to bowl a tennis ball at him. He totally ignored the ball and I forgot that my shoulder is still knackered, a big "Ouchy" from me, of course done silently! This may mean I'll have to rethink the beach cricket planned for Porthcothan next weekend and stick to French cricket only. 

I’m not really sure what this weekend will holds for me. If the weather is good I’m going to try and do a bit of photography of something that isn’t rugby related for a change. It’s also the 4^th Birthday of Nino’s in Pangbourne, they’re holding an open afternoon with pizza and wine on offer, so it would be rude not to pay them a visit I guess. Other than that it’ll be playing it by ear and not overdoing things.

As always, thanks for reading.

To be continued……..

#Shoulder2Shoulder

Where Do We Go From Here?

(Insert PIC)

Preface.

Normally I’d post the blog without any pre-warning or spoiler alerts. I tend to write on a daily basis, review what I’ve written, edit it a couple of times and then hit publish. This update is probably the most depressing one I’ve written for some considerable time. For no apparent reason I’m feeling pretty down this week, as will become clear in the writing. I know it won’t last and that the corner will be turned sooner rather than later, but for now I’m struggling to see any light at the end of the tunnel. I remember writing something vaguely similar after I’d finished RT and Chemo back in 2016 when I was “Waiting” for things to get better. So, you’ve been warned that there aren’t many laughs this week, and I’d quite understand if folk would rather just give this one a miss. (There is a rather nice recipe though). I debated long and hard whether I should even post an update this week, but I did say at the very beginning of this blog back in December 2015 that I’d write “Warts ‘n all” so read on and mind the warts.

Weekly Update.

The weekend was another quiet one of doing sod all really. The only time I left the house was first thing on Saturday morning to go up to OBR to take some photos. The club had been contacted by BBC Radio Berkshire to see if they could take part in something called Peach Quest, for those of you of a certain age its similar to Anneka Rice and Treasure hunt, but without the helicopter. So I duly trotted up to the club, camera in hand and took a few publicity shots as “Big G” bigged up the Rams Sirens and the presenter was game enough to attempt a couple of conversions. 

 Then it was back home to listen to TMS before the rain put paid to that and sleep took over for a while.

I’d been warned by a fellow Lary user that eating rice could be a problem as it had a tendency to stick in the throat on the way down. I was slightly concerned about this as I’m struggling to eat potatoes unless they’re mashed to within an inch of their life, and I quite liked the versatility of rice. As the weather was so miserable, wet and cold I thought a bit of Spanish cooking would be in order to brighten up a dull day in more ways than one. Paella was prepared, along with Spanish potatoes cooked with mushrooms, garlic and peppers. I’m pleased to say that it all slipped down easily, albeit with many sips of water taken during the meal.

By the end of Saturday my throat was beginning to feel quite sore, and when I woke on Sunday, after a really crap night, I was in quite a bit of pain, especially when I swallowed. This wasn’t in the plan at all, I’ve been out for three weeks now, I shouldn’t be getting pain in the throat at this point surely? My shoulder is also giving me quite a bit of pain again after Vicki had given it a good going over last week. I’ve been completing the exercises she prescribed but by the end of each day it’s got to a point where I can hardly move it without being in considerable pain.

Spanish Potato Bites –

This is a great way to use up left over mashed potato.

In a bowl add finely chopped tomatoes, garlic and red pepper to the cold mashed potato. Mix well.

Then add in roughly 1/3 volume of bread crumbs to the potato mix and about a tea spoon of smoked

paprika powder.

Divide the mix into desert spoon sized patties and firm up in your hands. (am I the only one who 

inds handling mashed potato slightly erotic?).

Heat some oil over a medium heat in a heavy based frying pan, add the patties and turn regularly to

get an even cook. Once nicely browned (about 8 minutes in total) serve with what ever small tapas

dishes. They work really well with mushrooms fried with garlic and chorizo.

Sunday was spent doing nothing more productive than writing this blog, and listening to the radio. I tried to eat a steak for dinner, the first red meat since the op. Failed big time I’m afraid, got about two bites in and couldn’t get it down, so just gave up in frustration. I’m not yet in a position to go back to work as my body is nowhere near to being fully recovered from the surgery and my voice would be shot to pieces if I used it all day. But, unless I can start to interact a bit more, exercise more and stop sitting in the living room feeling sorry for myself whilst watching NetFlix, then I’m not sure when I’m going to be fit to restart my life.

Stupidly I agreed an update to Windows 10 last week (This is the worst OS I’ve ever come across!) the Windows version of Siri is called Cortana. She (it) requested that I use the voice recognition software, well that’s the challenge for later in the week set. I’ll be amazed if it can recognise anything that I say, I’ll let you know how it goes* 

*at the time of writing I haven’t bothered to play with Cortana.

You may remember that I had a run in with a greasy haired oik at Waitrose a couple of weeks ago when he parked in a family parking slot. He’s also the bloke who called me a freak. Well I bumped into him again on Monday morning as I was on my way to pick up a prescription. This time he parked on double yellow lines blocking a business access whilst he ran into the Nationwide, well when I say ran I think waddled quickly would be a better description. He was walking directly towards me and obviously didn’t recognise me, I’d have thought the hole in my neck might have been a giveaway, however once I’d introduced myself by saying “You’re still a parking twat then?” he seemed to twig and tried to get out of my way, with a look of pure terror on his face. It’s quite pleasing to know he’s local, as I can see that we’ll become well acquainted over the next few months. I’ll treat it as my “Care in the Community” project to re-educate him on courteous parking!

I’m feeling pretty low this week. Life is a case of getting up, eating, watching TV, going to bed and then repeating. I’ve got the balance between recovering and living totally wrong at the moment. I hardly get out of the house and other than Carol and Max I’m not really speaking to anyone either. The problem is I don’t know how to get myself out of this current malaise. I know it’s only 5 weeks since the operation and when I eventually escaped from the hospital I thought that would be the start of a new beginning. Now I look in the mirror and I hardly recognise the face that’s looking back at me, not just the scars and the stoma, it’s my eyes that aren’t smiling anymore. Making the videos last week wasn’t a good idea. In my mind my voice was pretty good and strong, but listening back to the video I realise that unless people listen carefully to me then they’re going to struggle to understand what I’m saying. This makes going back to work very difficult at the moment. Despite outward appearances I’m nowhere near to being back to normal and I can’t see the time when that will be the case anytime soon.

Tuesday followed Monday as sure as night follows day. Up early, breakfast, TV, lunch, TV, afternoon snack, TV, dinner, TV……. Bed.

Wednesday started badly, went down hill to the pits and slowly started an upward curve back to just “Crap”. I’m feeling totally useless at the moment, even the simplest tasks seem to be getting to me. I’ve been downloading Lightroom to my Laptop and trying to sync photos from a hard drive should be a five minute task, it took me most of the morning and almost resulted in said Laptop being thrown through the window in frustration. A spilt bowl of cereral, struggling to find a bag of flour, finally cutting my finger on the mandolin (took 8 months from when I first started using it, so not too bad), the day was a real cracker!

Thursday arrived with a decent lie in for a change and to make it better I actually had something in my diary. I went into town to meet up with two work colleagues for a catch up. After realising I’d directed them to the wrong car park we eventually sat down for a coffee and chin wag, well that was the plan. In the end I had to do far more listening than talking as my stoma was having one of its more “Fluid” days and needed to be cleaned four times between 9am and 11.30am, I’d normally only clean it probably three times in a day. I lasted about an hour in town before I had go back home, have something to eat and put my feet up. I was good to get an update with what’s going on in the office and find out how my case load has been progressing for the past few weeks, but it’s reinforced that I’m not ready physically to go back yet. Speaking for more than about a minute in one go makes me very breathless as I’m still learning that when I’m speaking I’m not able to take any breaths. It’s quite a trick to master and one that I’m going to have to make a conscious effort to practise and perfect.

I was lucky enough to get another physio appointment on Thursday evening at the rugby club to look at my shoulder, which despite doing the exercises is still quite painful. Vicki gave me a good pummelling for half an hour or so and by the end of the session I’d got a few more degrees of movement back into my right arm, I suspect that by Saturday morning I’ll be paying for it, but the long term goal of full movement will be worth it.

I’ve no real plans for the weekend at the moment. On Sunday Max fly’s off to Hamburg for a 4 day break with the latest squeeze, so depending on how the stoma is behaving I may suggest to Carol that we go out for dinner in the evening.

Next week’s update will be full of the joys of spring (Or even British Summer if it ever reappears) there will be laughs, japes, pictures of fluffy kittens and other such happy events.

As a special sneak preview of how good next week will be, here's a video of the late, great. Lemmy covering the late, great David Bowie's Heroes - Motorhead - Heroes 

As always, thanks for reading.

To be continued……

#Shoulder2Shoulder