Video Killed the Radio Star

As promised the weekend was spent lounging around in my Y Fronts having the odd scratch.

Honestly it wasn’t much more energetic than that. Carol and I went into town briefly on Saturday as I needed to buy some Y shaped necked t-shirts that don’t cover the stoma. Breathing through a t-shirt or sweater isn’t a problem really, but if I need to cough or sneeze it makes a bit of a mess. Luckily M&S came up trumps so we weren’t in for too long. The rest of the weekend was spent listening to BBC Radio 5 Live and their wonderful coverage of the Open Golf. Golf on the radio shouldn’t work, but it does, mainly due to the skilful and informed commentators the BBC employs.

I woke up on Sunday morning feeling pretty rough around the stoma area and realised that like an idiot I’d left Lary (Note the new and correct spelling) out for the night by accident. I’d been using a gauze flap over the hole for an hour or so before going to bed to help with my breathing and had forgotten when I’d taken Lary out to clean him. At this early stage the wound is still pretty raw and new, the effect of not having Lary in place for around 10 hours was that the hole had started to contract on itself. This made putting Lary back in place on Sunday morning a pretty sore and painful experience. That was an error I don’t intend repeating any time soon.

Monday was another day waking up and feeling rough. I’d had a poor nights sleep and one look in the mirror confirmed my suspicions. The right side of my face was puffed up and quite swollen and I couldn’t close my mouth properly. I mailed the CNS Team at RBH on a separate matter that morning and added in about the swelling. Jo quickly replied and put my mind at ease by advising that the lymph glans don’t drain properly whilst lying down and should drain during the course of the day, as always she was correct and by lunchtime I looked almost normal. Still slightly “Desperate Dan” around the chin line, but much better than when I woke up. Jo also mentioned that she has a patient who’s undergone the same procedure as me who’s looking to write about his experiences, he’d also like to talk to someone who’s in the same boat as him. I mentioned to Yun when I was in the Churchill that I’d like to offer something tangible back rather than just the blogging, so I’ve told Jo I’d be more than happy to meet up and offer any advice I can. I’ve been contacted by the RBH Lary Group (Hence the change from Lary to Larry). They meet up monthly and I’ll hopefully be able to attend the September meeting. From what I can gather it’s a very informal gathering over coffee and biscuits to talk about the latest medical advances in Lary care and to have a general chinwag. It could be that the only thing we have in common is Lary, but the worst that can happen is I waste an hour or so of my time, the best being I could make new friends who could help me through any issues I’m likely to come across.

I also had my meeting with the Practise Nurse at my GP’s following the District Nurses refusal to come out to me. It was a bit of a waste of time as the nurse hadn’t actually seen a stoma patient before and needed to check with a GP to see if there was anything she specifically needed to check. We agreed that I’m perfectly capable of looking after the stoma and Lary myself and the box that says I needed to be seen by a healthcare professional is well and truly ticked. The Practise Nurse can also tick the box saying she’s now seen a stoma patient.

I was a little bit early for my appointment at the GP’s and there’s a really good independent coffee house five minutes away from the practise that I’ve used numerous times in the past. So off I wandered. At the door of the coffee house there were five people, all with small dogs on leads who seemed to be a bit lost. After a bit of a game of “After you Maud” I finally made it into the shop and ordered my large cappuccino. I was followed in by the five small dogs and their owners who proceeded to make a huge fuss about settling the dogs down (Yappy little buggers – the dogs, and the owners it turned out) before making an equally huge fuss about ordering their bean based beverages. Now this next passage may seem a bit politically incorrect, but please bear with me, or just skip to the next part of the blog.

Once they’d settled down, and moaned about the lack of Oat Milk (WTF is oak milk?) they started to discuss the merits of the latest TV bollox that is Love Island. Picture the scene, one woman with a baby strapped to her chest with a sling thing, another with multi coloured hair, a bloke who was more camp than Butlins and two other ladies who looked like ageing hippies. The conversation then moved onto the chances of having a same sex Love Island shown on main steam TV, at this point they came out with every single politically correct phrase, saying or buzzword you could possibly imagine. They were trying to outdo each other with their “It would be awesome” comments. I was almost in tears of laughter, as was the young lady behind the counter of the coffee shop. Now it may seem as though I was prying on a private conversation, nothing could be further from the truth, I was sitting a good 20 feet away but the volume of the conversation could have been heard in Hampshire. This sort of conversation can be heard when any group of people get together who are trying to impress each other. It could be builders comparing the size of their jack hammers, bankers talking about the size of their bonus’s, etc, etc. Please don’t think of me badly, it was just such a cliché, and you probably needed to be there to find it funny, but life is pretty boring at the moment, so I take amusement where I can find it.

As regular readers may have noticed I’ve finally got around to watermarking my photo’s after years of promising myself I’ll do it. The main reason behind this is that some time over this summer I’ll be setting up my own photography website which will show off the pictures at a better resolution than Facebook allows at present. I’d been trying to design a decent logo however I haven’t got the correct software or the correct skills to do it. This is where the power of Facebook Friends comes into play. I noticed that someone I’ve known for a few years via London Irish had recently set up her own DTP / Graphic Design company. A quick message followed by a couple of emails produced the lovely logo at the top of this post. So, if you have any design needs I suggest you contact Sarah at Sarah Whitfield DTP / Graphic Design and see if she’s able to help. Her rates are very competitive. I’ve now started to watermark all the photo’s I put up on FB, they look pretty good in my opinion. Someone suggested that I ask folk who are using my pics as their profile pictures to make a £5.00 donation to the Berkshire Cancer Centre. Whilst it’s a great idea I wouldn’t want to put pressure on people, it could perhaps feel like one of the chuggers who ambush you every time you walk down a High Street. Watch this space. 

Sleep on Monday night just didn’t happen, I was coughing badly which meant I had to keep cleaning Lary out. Eventually I gave up and went downstairs to watch TV and have a cup of tea. For the first time in a few weeks I was actually in pain and resorted to my mate morphine for some assistance. It didn’t work, normally I’d be knocked out within minutes, this time I was still awake at gone 3am and the sky was starting to lighten with dawn approaching. The lack of sleep meant that Tuesday was a wipe out, I had no energy to do anything at all, so veg’d out on the sofa. I was trying to watch Netflix, however my efforts were defeated by errant son and number one daughter who were both on line, daughter up in Leeds seems to be still bumming off my account, hmmmm………

I dragged myself out of my stupor enough on Tuesday evening to go up to OBR for a Physio’s appointment. One of the many advantages to being a member at Redingensians is the ability to use the Physio facilities if there is a space. As my shoulder is still painful following the operation I thought I’d take advantage of the service. So I rolled up to see the wonderful Victoria. I’d always thought Vicky was a lovely person who wouldn’t say boo to a goose. Blimey, how wrong was I? Once she had me on the couch she pummelled my shoulder into submission whether it wanted to or not! After about 20 minutes of torture it felt so much easier than it had for a few weeks. Vicky knows her stuff, she knew exactly where to work on to ease the muscles that had basically locked up. She’s also come up with some great ideas for the future to help with the scaring and my neck movement. Vicky has her own Physio / Massage / Injury clinic over in Hartley Witney, call Body Reset Clinic Body Reset Clinic  I can’t recommend her services highly enough (She told me to write that otherwise she’ll really hurt me next time!) – 

The remainder of the week was spent relaxing and trying to conserve / build up energy. I did meet up with an old friend on Thursday for lunch which in itself was something of an achievement for me. The last couple of nights I’d been struggling to eat properly and had been having the problem of food reappearing via my nose as the throat passage was getting blocked quite quickly. So, it was with a degree of trepidation that I arrived at the Highway Man over on Exlade St, would I make a total arse of myself in public rather than in private. A couple of pints of Loddon Hoppit preceded lunch of a shared scotch egg and sausage roll (far posher than it sounds!). Whilst I struggled slightly and had to make sure I took sips of drink between each mouthful and making sure the mouthfuls were not massive, I managed without spouting any food back out of my nose. So I can now put a tick next to the box that says “Eaten out”. Next stop, Nino’s?

A number of people had asked what my voice sounded like now, so I thought making a short video would be a way of letting those I haven’t seen face to face how I was getting on. Max acted as cameraman and we managed to do it in one take with no swearing. It won’t win an Oscar, unless it’s entered into the Foreign Language section, but it gives an idea of what I do to be able to speak each day. The full YouTube video is here if you’re interested – Putting a Lary In Video

When I watched the video back before uploading I was slightly disappointed how I sounded. In my head I sound crystal clear, I didn’t realise that I was having to force swallow so often. There’s some way to go before I’ll feel 100% confident in speaking to any formal degree, but at least now I know I’ve still got to work at my voice. Being able to use the flat base plate more often will certainly help with my confidence.

Following many, many, many requests (ok, two) I’ve also made a short video of 15 different movies quotes, I’ve tried my best to add in accents where possible, with limited success. 15 Movie Quotes perhaps “Lary Man quotes the movies” will become the next internet sensation, suspect not though 😊 The “Messy” background is my mistake as I shot the video myself using a tripod. I stupidly thought I could edit it via Lightroom and crop down the image, opps. There’s one curve ball within the 15, how many can you name? I think my career as a video blogger may well have finished after the two efforts, and I'll stick to still photography. 

For the last god knows how many years we’ve tried to have a short break in Cornwall in August. Since I was a young lad I’ve been going to Porthcothan Bay near Padstow, first with my parents, then with Carol before we married. We even spent our honeymoon there. When the kids came along and were old enough to enjoy camping there was only one place we were going to go. This year I’m not really up to camping in a tent, managing the stoma at this early stage really needs running water and electricity on tap. We stay at a site called Carnevas Holiday Park  which has been run by the Brewer family since we first started going there in the 1970’s. To get a tent pitch is usually pretty easy, but to contact Caroline in July and ask if they have any statics free for August was probably pushing our luck a bit. Well, she came up trumps with the final caravan available, so a week at the coast is on the cards. A further advantage of having a caravan rather than a tent will make it easier to self-carter. Whilst the small step of a pub lunch has been passed I wouldn’t want to have the pressure of myself of eating out each night.

The week ended with a pleasant surprise as Anna made a surprise home visit for the weekend. And I've cracked 78kg on the scales #fatbastard 

As always, thanks for reading.

To be continued……

#Shoulder2Shoulder 

“No, I Am Your Father……”

(A week of lows, highs and blowing snot bubbles!)

Weekly Update

Saturday was the day of the Fat Boy 7s held at Abbey RFC. I’ve been going for the last 10 years and initially thought I’d have to miss this year’s event. I originally started going to the FB7s when the age group Max was involved with at Redingensians made an overseas tour to the Isle of Wight as Under 8s. We’d been chatting to someone who over the years has become a good friend. His son was terminally ill with cancer and was only three years old. Gordon, Nikki and Jack came to watch the lads play that day on IOW and brought with them luck as they went on to win the Festival. The folk who ran the FB7s were also friends of the Wakefield family, hence the connection and love for the weekend. After Jack had sadly died the age group awarded a “Playing for Jack” trophy each year to a player within the group who’d shown a great “Can do” attitude during the season. It was always my favourite trophy to award, even if I could never do it without blubbing.

The weekend actually started on Friday night when Carol and I went up to Abbey to watch Max play for the Wooden Spoon side. It was a bit of a one sided affair with the Spoon being dicked royally by a good Abbey side. But the weekend of rugby, boozing and fun had started for the happy campers. The Abbey Nuns had also been collecting for the Berkshire Cancer Centre Charity, on the evening they raised an amazing £170.23 plus $5.00 the charity will be so grateful for the generosity of all those who donated.

I arrived back at the club at around 8.30am on Saturday morning. There were an awful lot of sore heads and bleary eyes on view, and I was quite pleased my sense of smell had disappeared!

As well as two Badger teams, there was also the Rams Sirens Ladies side making their 7’s debut, 

 They were on a steep learning curve and perhaps missing a couple of key players through injury, but they improved with each match that I watched and ended up losing in their final, which for a debut is a cracking result.

Max was playing for the Badger Social side. They had a bit of a mixed day and crashed out in the quarter final stages of their group. Perhaps a bit disappointing as they were the defending champions. The Elite Badgers were also defending their title and comfortably cruised through to the main competition final where they defeated a strong Wolves side to win for the third year on the bounce. 

It was great to catch up with old friends who I probably only see once a year at the festival. The feelings of goodwill and compassion were amazing to be on the end of. As promised Coco presented my with a Camel Jockey shirt which will be worn with pride! 

It took about 3 hours and probably a couple of pints before one of the more social badgers requested the obvious one “Paul, you’ve got to say to Max “”Max, I am your father”” – Ok, the voice is slightly Darth Vaderish, albeit a slightly camp Darth Vader. It was funny at the time, honestly ‘guv.

I pushed my luck if I’m honest on Saturday. Arriving at 8.30 and not leaving until 4.30 was quite frankly stupid. The weather was typical Ice Station Abbey in the morning. Cold, wet and miserable. All I “Ate” during the day were 4 Ensure protein drinks. By the time I got home around 5pm I was totally spent and could only just about force down a bowl of soup prior to crashing out for an hour or so.

I spent the evening downloading and editing over 400 photo’s from the day, again I should have just waited and gone to bed. Although I have to say some of the shots I got were rather pleasing – Here’s the link to my s2s Facebook page if you want to have a look at the shots S2S Photography 

I couldn’t eat, food was going down ok, getting caught in my throat and then exiting again via my nose, very unpleasant, very humiliating, and quite concerning as it happened three times on Saturday evening before I eventually succumbed to bed.

Sunday started badly. I was awake from 5am, up at 6am trying to eat some porridge, and then back to bed at 8am for a couple of hours. I was feeling pretty sorry for myself. My first attempt at clearing Larry resulted in a large string of mucus being deposited on a shirt I’d just put on. My teddies went out of the cot, and legged it down the road before I could kick them any further. I had some pretty dark thoughts during the day. How am I going to live and work a normal life going forward when I can’t talk without struggling? I can’t wear clothes without making a mess on them? I can’t eat without making an idiot of myself? It took me until some time in the evening to realise that it’s only 3 weeks since I underwent major surgery. To even be talking yet, let alone spending 8 or 9 hours out of the house doing what I love is amazing. I’m going to have bad days and Sunday was one of those, albeit probably self inflicted by being a bit of a dick on Saturday!

I finally managed to get an appointment with my GP on Monday morning, we’d been trying since I was discharged and the earliest we could get was mid August, by which time I’d have run out of Ensure drinks and other meds. The Dr. I saw was great, she ran through the correspondence they’d received from the hospital and confirmed that the first prescription for “Larry Care” had been completed so the supplies should be with me in the next week or so. She also filled out fresh prescriptions for the meds I’m running low on. I was grateful for the emergency appointment as I was beginning to get concerned. I’d never really got the info. from Churchill as to how supplies would get to me, it had all been a little bit vague. Whilst the treatment I received at the hospital was superb, the GP service has been anything but. I was told by the nurses at Churchill that they were trying to arrange for the local district nurse to pay a home visit to me, this is protocol for patients discharged who’ve had a laryngectomy. The district nurse in question has point blankly refused to conduct a home visit to me for some reason or another and at one point this was jeopardising my release from hospital. Whilst I was still in Churchill and before I’d had the swallow test the district nurse called up on the home phone asking to speak to me? Carol gave her the benefit of her wisdom. So, instead of a nurse coming round to check up on a new patient on her patch I’ve had to make an appointment with the practise nurse at my GP’s so she can check that I’m looking after myself properly. Now for me this isn’t a major problem, I’m young and I’m mobile so I can get into the surgery easily. If I was a OAP living at home by myself and having to rely on public transport…….

The day was spent “Hunkering” down. I’d had a very poor night’s sleep, having to get up every 90 minutes or so, so dozing on the sofa whilst listening to TMS was about as energetic as I got I’m afraid. I’ve told myself that I’ve got to start exercising again, but right now I just don’t have the energy to cycle of lift weights. The night was just about as poor as the day, I was in bed by 9am feeling decidedly sorry for myself. When I had RT and Chemo back in 2016 I suffered quite badly from stomach problems, mainly due to the various drugs that were being pumped into me. I didn’t expect to have the same problems this time as I haven’t taken any drugs now all for over two weeks. However my stomach seemed to have other ideas. The GP reckoned it could well be down to my change in diet from being fed via an NG tube to eating vaguely normal food. Overnight the “problem” seemed to shift itself somewhat, I won’t go into the gory details, but I woke up feeling 1000% better and a bit more like a human again.

Carol went back to work on Tuesday after taking three weeks off to look after me. I feel pretty guilty as she’s had a tough few weeks what with travelling over to Oxford daily and then having me at home and feeling sorry for myself. Perhaps going back to work will offer some respite to her. Max is still at home having finished his exams, but he’s working quite a bit over the summer so I’ll be on my own most days. An incentive to actually work on my recovery rather than sitting around watching the TV all day.

I received a message via FB on Tuesday evening from someone I’d been chatting to prior to going under the knife. She’s an oncology nurse and was quite interested in how I’d got on with the Op. and recovery. Her advice, which seems to be the mantra I’m hearing from everyone at the moment, is TAKE IT EASY and listen to my body. If it’s saying rest, then rest. If it’s saying sleep, then sleep.

I was reflecting on Wednesday morning about the changes in my morning routine over the years and how it’s taking longer and longer each morning. As a teenager it was a case of jump out of bed, hop in the shower, get dressed and the day was ready to start. By my mid 20’s I’d added in the need to put in my contact lenses which could take an extra couple of minutes if the little bastards were playing up. Fast forward to my early 50’s and there’s a false tooth to be added to the mix, another minute or two to add to the routine. And now I’ve the small matter of sorting Larry out. He comes out, gets cleaned, lubed up and popped back in for the day. I’m begging to wonder what the next addition will be, false leg perhaps? What I do know is that I now have to get up 15 minutes earlier each day to get the bits and pieces in place.

I finally got round to putting in the prescription for all my Ensure drinks to the local chemists. I was lucky in that they were in stock so I walked down to the local coffee shop whilst they were being made ready. A lovely cup of cappuccino served by a young lady who neither starred at me, nor spoke in a loud voice like I was deaf. This from a girl who can’t have been more than 18 and was working in a coffee shop. It’s a shame the assistant at the Chemists couldn’t act in the same way. She talked to me as though I had dementia and insisted on speaking in a manner like I was hard of hearing. I was close to telling her I’d lost my voice not my ears, but what was the point?

The afternoon was spent knocking up a quick lasagne……………

…………… it was lovely, but I think I cooked enough for six of us. Oh well, reheated lasagne is one of life’s great culinary pleasures.

Thursday was a good day. I was up early with Carol as I had my first scheduled appointment with the Speech Therapy team at RBH. A decent breakfast, followed by stepping on the scales to see I’m now weighing in at 75kg, about the same as before the operation. I’m pleased to have put that weight back on in 3 weeks. It seems the mantra of little and often for food is beginning to pay dividends.

I wasn’t really sure what to expect at RBH (Apart from the usual problems in finding a car park space) but the appointment was at 10am and I was called through at 10am. An hour later I was back on my way home from one of the most informative meetings I’ve had for a long time at the hospital. The therapist I saw, Caroline, was wonderful, there was no time pressures at all and she was more than happy to answer any of my daft questions. We tried out a new base plate with negates the need for Larry to be in place. It was far more comfortable and airtight which meant my voice was stronger and easier to understand. At the moment I can’t use it all the time as the stoma scaring is still settling down. Without Larry in place there is a chance that the stoma could start to contract which isn’t really something I’d want to happen. So, for the next couple of months I’ll use the new base plate for a couple of hours a day, and then revert back to Larry for the rest of the day. Hopefully by the end of September I should be able to relegate Larry to just overnight use. It was amazing, suddenly I felt far more confident in being able to talk without the horrible “Air Rattle” that I’ve got with Larry. Suddenly I saw that it would be possible to get back to work and perform fairly normally. We spent a while talking about what I do for a living and she felt there was no reason at all why I shouldn’t return.

The next task was to look at the valve in my throat that actually allows me to talk. It’s a very simple piece of work, and should last somewhere between two and six months before it needs replacing. The task of removing and replacing is normally done within 48 hours or so of being needed and it’s done by the Speech Therapists themselves. Eventually it is possible that I’ll be able to replace the valve myself, but that is sometime off yet. Caroline gave me various other bits and pieces that I may need going forward and has promised to get someone from the “Larry Club” to contact me to let me know when their next meetings are going to be held. Whilst I was still in hospital I was contacted by someone who’s father had gone through RT, Chemo and then a total voice box removal. She’d suggested that as her dad was local and had also been involved in raising funds for the Berkshire Cancer Centre that perhaps we should get together for a coffee when I got out. So I’ve sent the “Hello, your daughter gave me your details” email. Caroline also confirmed that if, and it’s a big if, my valve was to either fall out or get swallowed then I should be calling 999 and requesting an ambulance into hospital if I’m by myself. She’ll be getting her secretary to contact me to arrange my home number and mobile number to be registered with the ambulance service as a Larry user who may call but will not be able to speak. I sincerely hope I’ll not have to make use of this service. She’s advised me to practise speaking as much as I can, even if I’m at home by myself, she suggested reading out loud to myself J The final nugget of info. she threw into the ring is that in time I should be able to use a “Hands Free” valve which means I won’t have to press the filter with my finger to speak, that will make a huge difference to my quality of life. I’ve no idea how it works, but suspect it’s probably Witchcraft.

Caroline has confirmed that as far as she’s concerned I’m back under the care of RBH and should receive an appointment for the usual Thursday clinic in the next couple of weeks. Any initial concerns should go to Jo or Annabel, the RBH CNS Nurses, they’ll then point me in the right direction. Whilst the treatment I got from the Churchill in general and Blenheim Ward in particular was excellent, it is good to be back at RBH. The parking might be pants, the ENT Dept may be in an old Nissan Hut, but its local and its familiar. As we used to say about the Horse and Jockey pub when I worked at Avco, “It may be a shit hole, but it’s our shithole”. Avco was probably the worst job I’ve had in my time. I worked in the Resort Ownership Dept. (Timeshare!) calling up people who were in arrears with their payments. 8am > 8pm Monday to Thursday, 8am > 5pm on Friday and then usually 9am > 1pm on a Saturday. The Dept. was run by Steve “Lizard Eyes” Stewart and Trevor “Strawberry Blonde” Smith, a bigger pair of duplicitous twats you’d have a problem finding. Our only escape was to disappear over to the H&J after work each night for a couple of pints of whatever beer they’d managed to beg, steal or borrow from the brewery that week. It was a strange pub, not one you’d really want to venture into if you didn’t know someone already in there. One night a group of us where having a pint when the Quiz night started up. The Quiz master had obviously had a few before starting and was having  a few problems in reading the questions. The highlight for me was the question “Who had a hit with the single Kayleigh.” The answer he gave, and I kid you not, was Mary Lion! I was in tears under the table.

I vividly remember the time after I’d finished RT and Chemo last year. I’d had a really nasty weekend where I’d nearly been admitted back into RBH, my friends saw me at my very lowest ebb. 48 hours later and my recovery really started with a vengeance. This week hasn’t been anywhere near as bad as it was back in 2016, but it has been pretty low as far as this recovery goes. When I left the RBH on Thursday morning I wasn’t exactly walking on air, but I was feeling positive for the first time in a couple of weeks.

There are a few side effects to the surgery I underwent, one of which is a lack of feeling from my right ear, down to the neck and around the scaring. That feeling will probably never come back. As it also covers my hair line I decided it was time for the Number 1 all over to be the haircut of choice. So early Friday morning I made my way into Reading, wearing the new Larry for a couple of hours to get used to it. A quick coffee, then into the barbers I’ve been using for I guess 25 years or so. My barber, Paul, knows all about my cancer and didn’t bat an eyelid when I spoke in my best Darth Vader voice to him. 10 minutes later and I’m back out on the street wishing I bought a hat with me as the wind was slightly chilly. Another of the side effects is when you feel you’re going to sneeze your noses starts the usual itching feeling, this is despite there is no connection to the lungs or chest anymore. So it’s natural to pull out the tissues, and try to blow your nose, only for the sneeze to creep up on you, and explode via the side of your base plate all over your nice clean shirt! Ughhhhhhhhh…….. not nice, but incredibly amusing the first couple of times it happens. The final side effect (for today at least) is the total loss of smell. Up until Friday it hadn’t really had much of an impact, other than being unable to smell the noxious gasses produced by my backside earlier in the week (Info. supplied by the current Mrs C. and taken at face value). However today I was cooking sausage, egg and bacon for an early lunch, got side tracked answering an email and couldn’t smell the burning meat at all, luckily the smoke alarm in the kitchen works, and I quite like the taste of charcoal too.

Another week has been completed. The curve may be shallow, but it’s upward. Max is down in Exeter with his girlfriend for the weekend, Anna is trying to persuade Tom that their new house needs a cat, and I’ve shoved a bottle of prosecco in the fridge for when Carol gets back from work. I’ll not make the same mistake this weekend of burning the candle at both ends. It’ll be a case of resting up as much as possible and taking advantage of having the house to ourselves by lounging around in my Y fronts until mid afternoon.

As always, thanks for reading.

To be continued…………….

#Shoulder2Shoulder 

All the best Freaks are here…..

(Stop starring at me)

Weekend Update

Saturday was one of the best days I’ve had for a number of months. It started early with a shower and brush up and then standing outside of the hospital at 6.50am waiting for my Uber cab to arrive. Tim, from Redingensians, has been hugely supportive over the last few months, he’s also one of the club photographers and comes from Yorkshire, so we’ve a fair amount in common. He’d volunteered to pick me up and get me to OBR for the Lions match. I was fairly nervous, as this would be the first time I’d interacted with anyone outside of the hospital environment since the Op. I should have known that my friends who’ve known me for some years would look beyond the hole in my neck and just see me. Yes, they took the piss, but that’s a normal day at OBR (Or any rugby club for that matter!). Carol arrived shortly before kick off as did a good friend Jools, who’s a member at Abbey RFC, so it really was a case of into the Lions den for him 😊

I started the day with a coffee, but thought about half way through the first half that I’d get an orange juice and lemonade from the bar, somehow or other instead of a nice citrus based beverage I ended up with a pint of IPA, oh well, what is a man supposed to do. It tasted great, but it did take me the whole of the match to actually drink. 

The match was good. Very tense and could have gone either way. To be honest the AB’s were unlucky with the final decision of the day, but over the years they’ve been on the end of far more dodgy decisions in their favour.

The absolute highlight of the morning at OBR for me had nothing to do with rugby. The kitchen had been serving “Full English” to anyone who wanted it, now whilst I can’t smell at the moment, there’s nothing wrong with my eyes. A couple of Ensure drinks are good enough to keep you going, but……… The kitchen was being run for the day by Alison (Club Chairman’s Wife) and Cath (Club CEO’s wife), two ladies who’ve been great to us over the years and specifically since cancer came out to play with me. Within 10 minutes a plate of scrambled eggs, beans and hash browns had been produced. Now bear in mind I’d been advised to stay on pureed food for three or four days. Well this wasn’t pureed rubbish and it was wolfed down. Forget 5* restaurant food, this was far, far better!

After the match Carol and I made our way home for a few hours on R’n R. I spent about 40 minutes wallowing in a deep bubble bath which was truly bliss. Then back to normality with me cooking lunch. Sea bass, crushed new potatoes and a cream, white wine, garlic and basil sauce.

Firstly it was great to be back in the kitchen, making up sauces recipes as I went along with whatever was to hand, and secondly it was lovely to be able to cook for Carol again.

Then all too soon it was time to get back to the hospital and let the good parts of the day unwind to almost be forgotten.

Dinner was served at around 5pm (far, far too early) and was just about inedible

 I think the orange stuff was probably a curry, but I have no idea at all what the to “Off” white bits were, as for the peas………. DISGUSTING! I’m not an overly fussy eater, but I can’t eat food if it tastes awful. So far the three meals I’ve been served have been to the same very low standard. The menu options allow you to give feedback to the catering team. I’m pretty sure I’ll get no response from the feedback I gave. I didn’t swear, I was polite, I think I was constructive. I was also very damning of the rubbish they were producing. I’m totally aware that the budget for patient’s food is minimal, but for the love of god, they must be able to produce something that is edible surely?

Every healthcare professional I’ve seen in the last few days, Surgeon, Dietician, Speech Therapist, CNS Nurse has emphasised that my weight is a concern, but how am I supposed to gain weight when being served food I wouldn’t wish on my worst enemy? I was so impassioned about this subject that I wrote a two page letter in, the wee small hours when sleep wouldn’t come, to my surgeon praising the level of individual care I’d received but begging to be let home so that I can feed myself tasty and nutritious food which will aid my recovery and reduce the burden on the NHS by freeing up my bed. I decided in the end not to pass the letter over and instead have written a detailed “Trip Advisor” report to the CNS teams in Oxford and Reading outlining my pure admiration for the work of ALL folk I’ve been in contact with, and my despair over the quality of the catering.

On Sunday morning I was offered breakfast in my room, I opted for a yoghurt and cup of tea, thinking what could go wrong with that? So at 6.45am I’m tucking into a toffee yoghurt……… dear oh dear, I’m not sure if it’s just me being fussy, but is that suitable? In the end I decided to wander off to the onsite restaurant and bought my own breakfast of fried egg, mushrooms, hash brown and beans. I’m lucky in that I’m mobile enough to get down to the restaurant by myself, and whilst it’s not overly expensive, I’m sure there are people in here who can’t really afford to be buying their own food on a daily basis and nor should they have to.

Carol and I went out for lunch, ok it was only to Sainsburys, but it was still “Out”. I had a rather tasty lasagne with salad and garlic bread. Knocked back with orange and passion fruit drink and a pudding of coconut and pineapple smoothie. Then it was back to the hospital. It Seemed totally crazy that I was being kept in purely so my blood pressure, pulse and temperature could be taken three times a day. Carol bought in some bolognaise for me to reheat for evening dinner, it was tasty, looked good and got eaten! As did the Ambrosia rice pudding. I’m aiming to up to 80kg by the end of August, that should be doable if I keep on eating like it’s going out of fashion.

Carol & I had taken to walking in the lovely garden that was below the ward I was staying in for a short period when she was over. The weather had been very hot and the garden was peaceful and shaded. Carol and Max first found it one afternoon whilst I was having a sleep. Over the years Max has often commented that you never see baby pigeons, it’s an ongoing joke in our house. Well, whilst in the garden he noticed a pigeon nesting in one of the bushes, sitting on two or three eggs. When Carol & I wandered down on Sunday the eggs had hatched and low and behold, baby pigeons

So far all interaction I’ve had with the outside world has been positive, but I know the day will come when someone will say something within my earshot. It’s won’t be a child, they’re naturally inquisitive, it’ll be an ignorant adult. But you know what, it’ll be water off a ducks back to me. The cancer has gone, hopefully for good. The operation has left me with life changing differences which are going to take some considerable time to get used to. Once the scar on my stoma has settled down properly I’ll be able to use a much more stable base plate for Larry. That’ll mean that less air escapes from the stoma and thus my voice will be stronger. It’ll still sound like Darth Vader, but it’ll be stronger. A couple of people mentioned when I was at OBR on Saturday that my voice was easier to understand now than prior to the op. I hadn’t really realised just how weak it had got. I know that there are going to be some pretty shoite days ahead, but they will be outweighed by the good days, I’ll adapt.

On Sunday evening, just before the shift change I was saying goodbye to one of the nurses who’s been looking after me quite a bit since I came in. Her parting shot to me was “Remember, Carol needs to be a wife and a mother first, and a nurse to you second.” Blimey, that had the tears flowing as I’d never thought about it like that before. It’s so easy to say to people, “It’s ok, I can go home, my wife is a nurse.” Without thinking about the extra pressure that puts onto Carol.

Monday 10^th >> Friday 14^th

Monday morning was always going to be a big one, either way. My Surgeon came round very early, before 7.30am and as far as she was concerned I was good to go. Dietician arrived at 9am, good to go. Speech Therapist waited until 10.30, but also good to go! All I needed now were the discharge letter, sickness note for work and a bottle of Anti Acid medicine that apparently I’ve been taking – Can’t quite remember taking it, but hey ho. The various documents and potions arrived by 2pm and we were on our way home, for good. A cheese, marmite, and mayo sandwich was followed by another wallow in the bath and then 20 minutes relaxing in the garden with a very small glass of wine. 

The cat hadn’t seen me for two weeks and was slightly wary of my return, however she seemed to settle down ok, until I opened my mouth at which point she stared briefly at me with wide eyes and promptly legged it for the afternoon. Oh what fun!

We’ve had a quick discussion at home regarding cooking arrangements, for the time being I’m going to cook my own food each night so I’m not forcing myself to try and eat stuff which perhaps isn’t suitable just so we can eat together. I doubt this arrangement will last much beyond the coming weekend. (It didn’t actually last beyond Tuesday).

The remainder of the afternoon was spent sorting out all the bits and pieces I’d brought back from the hospital. All the medical stuff is stored within easy access in the bath room, at some point I’m going to try and get three of everything so I can keep a supply at home, in the car and out with me wherever I go. There were a couple of booklets that I hadn’t really read when I was in hospital. One had a sticker in it to place on one of the car windows advising in case of accident that it was possible one occupant had a stoma. The other neat little trick is a plastic tub which sits in the fridge. Within the tub are my medical and emergency contact details. One of the questions on the form was do you have any distinguishing marks? My reply was “Large hole in my neck”!  On the inside of the front door I’ve stuck a green sticker which all emergency services know to look for, another sticker is on the fridge door. I did ask why it was kept in the fridge, the answer being that probably 99.9% of households will have access to a fridge. Very clever whoever came up with that idea.

So exactly two weeks after the Op. I’ve been allowed to go back home to really start the long road to recovery. I’ve been reflecting a bit on the last couple of weeks and what I’ve learnt from the experience. Firstly there was very little pain involved, even on day 2 and day 3 I wasn’t using the automated morphine dispenser that much. The neck was sore and to a degree it still is. My shoulders are the most painful part of my body at the moment, especially the right one which has dropped quite a bit. The two weeks have been pretty damn boring, especially the last 7 days. I’ve survived by using my iPod, Kindle, Laptop, Neflix and most of all, the totally irreplaceable BBC Radio. I was told by more than one of the people who were looking after me that I’ve made a remarkably quick recovery considering the invasive surgery I underwent. In fact the Speech Therapist told me that she’d never seen anybody go home as quickly as me and being able to speak so well. My task going forward is to ensure I keep my progress going and to not sit on my laurels. When Carol and I left the ward for the last time I couldn’t help but peak into the original shared cubicle where I’d started. There was “Roomie”, still lying in bed, still not dressed and still using his nurse call button at the drop of a hat. I wish him well, and I hope he eventually recovers, but I can’t help thinking that perhaps he needs a kick up the backside to get him started?

Tuesday started brightly enough, 10 hours of sleep certainly helped, as did a decent breakfast. Then it started to unravel a bit. Carol and I had planned to go into town, I need some storage units for all the meds and Carol had some “Soft Furnishing” stuff to pick up from Debenhams. I thought it would be a great chance to get some fresh air, interact with people outside of the hospital and get a decent cup of coffee. For some reason or other I really struggled to get Larry sited correctly this morning, that in turn meant there was a lot of air coming out of the stoma, thus I could hardly speak. I was also having problems clearing the mucus from my lungs which resulted in a “Rattle” like noise coming out. My confidence was fucked, I just gave up on the idea of going out and decided I’d be much better off feeling rather sorry for myself. We always knew that once I’d left the cosseted environment of the hospital that we’d have set backs. In the grand scheme of things this isn’t a bad one, it’s not like I was ill, or the stoma was playing up, or anything that would make me go back into hospital in the short term. It’s just an annoying little crisis in confidence that I’ll get over. At the Churchill there was always a nurse one electronic buzz away. I had an endless supply of tissues to use. I was safe. The day was eventually spent fuelling myself, little and often and generally having a bit of a “Fuck this for a laugh” sort of day. The first for some time, and hopefully the last for some time too. My stoma was feeling pretty tight and sore for most of the day. I’d been advised to take Larry out for an hour or so each day just to get some air to the wound. I tried that whilst I was having an afternoon nap on Tuesday afternoon. When I woke about an hour or so later I struggled to get Larry back in place, that’s the first time that’s happened. I know that the wound will contract over time and that it’s important to try to keep it stretched, I just didn’t expect it to happen quite so quickly.

Sleep was just not going to happen on Tuesday night, could be that my body was craving a sleeping tablet that I’d be using in the hospital, well tough, it’s not going to get one! I got up around 12.30, watched an episode of House of Cards, emptied the dish washer, pissed off the cat and eventually went back to bed around 1.45am.

Wednesday morning was good. I resolved to get into town as I need some sort of bum bag to carry around my meds with me when I’m out. The trip into Reading was quite daunting. I was by myself and felt a little but vulnerable, there were a few “Stares” from the usual dregs who hang out around the St Mary’s shopping centre midweek, but nothing was said. I stopped off at my favourite coffee shop, Artigiano’s for a cappuccino before hitting M&S (big mistake, there was a sale on) and then Debenhams which had exactly what I wanted, but at £75.00 they were never going to get a sale from me. I eventually found exactly what I was looking for on Amazon at a third of the price. “Man Bag Clark” coming to a venue near you soon! I know it sounds a bit daft, but that trip into town was a major step for me. I had to clear out Larry once and didn’t feel embarrassed in doing it in public. I had to interact with three strangers and had no real problems with them understanding me. I didn’t feel overly self conscious walking around town with Larry on display. I did however learn that I need a large supply of tissues with me wherever I go as when Larry needs cleaning he’s a messy bugger.

An afternoon spent on the sofa watching Andy Murray morph from plucky Brit to useless Jock was about as energetic as it got, truth be told I was feeling pretty well cream crackered after the lack of sleep last night, but I was determined not to have an afternoon nap with a view to crashing out as soon as my head hit the pillow. It seemed to work as a pretty good night was had.

32 Years ago on Thursday 13^th July Bob Geldof was at Wembley stadium urging you to "not go to the pub tonight, stay in and give me the money" - It's an urban myth that he said "Fu**ing Money". Meanwhile, about 35 miles South East, at Holy Trinity Church in Bracknell Carol and I exchanged vows. One of the vows involved "In sickness and in health". The first 30 years or so were pretty good, the odd cold, a couple of strained ankles, bad backs (both of us), but nothing too serious. Then came the big "C" to have a crack at ruining our future. We'll we’re maybe a bit more scarred than we were two years ago (Mentally and physically) but we're still here and from now on we're planning on concentrating on the health side of things. 

Without Carol, I couldn't have done this, here's to the next 32 years. 

Normally we’d be celebrating by going to Nino’s for dinner, however it’s still far too early. When I’m eating I make strange noises as the food goes down my new throat. It also takes ages to eat a meal, so I wouldn’t be able to do Nino’s food justice. Instead it was a quick trip to Waitrose for an Indian takeaway that we could pick at whilst gazing longingly into each other’s eyes! (Opp’s sorry, gone all Barbara Cartland there!).

It was whilst at Waitrose that I had my first “Encounter”. A rather large (as in obese), sweaty, balding man parked his car in a mother and babies space, when I say “Parked” I think abandoned would be a better description, this is a real bug bare of mine I’m afraid. I caught up with him and told him he’d forgotten his child, he just looked at me and walked into the shop without saying a thing. So, I caught up with him again, repeated what I’d said and suggested he might try parking somewhere else. Now I’ll admit my voice wasn’t that strong, but I’m sure he heard me. Again he walked off, again I caught up with him. He turned round, called me a “Fuc**ng Freak” and walked off again. At this point I gave up, went outside and pissed all over his door handle!! (Ok, the last bit I made up!). So, there you go, the first encounter with a one eyed bigot, I’m sure it won’t be the last, but hey ho!

The afternoon was spent back at Churchill Hospital for my monthly MDT (Multi Disciplinary Team) meeting, hopefully future meetings will be at RBH. Our appointment was at 3.50, we were eventually called through at 4.45 to see Mrs Fraser and Mim the Speech Therapist. All is good, they’re happy with the progress and I’ve a meeting with the Speech Therapy Dept. at RBH on Thursday 20^th July. In and out in 10 minutes, which does beggar the question why I needed to be seen only 3 days after being discharged? It was nothing more than a chat, not “Up the nose, down the throat”, no new base plate fitting for Larry. It also meant we left Churchill at 5pm, just right for catching all the rush hour traffic in Oxford, which is a crap place to drive around at the best of times.

And now it’s Friday and there’s a blog to be posted. This week has been challenging, but there have been far more peaks than troughs. The obvious peak being that I’m now home, even though that does lead to a few troughs too. This evening Carol and I will be up at Abbey RFC to watch Max play for the invitational Wooden Spoon side against an Abbey XV. This is the curtain raiser ahead of the “International Fat Boy 7s” being held tomorrow. Max is playing for the Badgers Social side who are defending their title, as are the Badger Elite Squad. Rams Ladies side, the Sirens, are making their debut at a 7s Festival so I hope to be able to get some shots of all the sides at some point in the day. My S2S Photography page has been idle for far too long of late, it needs some content added. If you do happen to be at Abbey this evening and you see a bunch of Nuns with collection buckets, please dig deeply, as they’re collecting for the Berkshire Cancer Centre.

Next week I’m going to have to start looking at the future. Carol will be going back to work on Tuesday as I’m now pretty independent. Max will be around anyway if I need someone to talk on the phone for me. At some point I need to speak to my boss about a phased return to work, it won’t be for a few weeks yet as I need to get my strength back, but planning doesn’t do any harm.

As always, thanks for reading.

To be continued…..

#Shoulder2Shoulder

Welcome to the Hotel California.

This will probably be the longest update I’ve written for some considerable time. Sorry, but I’ve sod all else to do at the moment other than watch Netflix or write the blog. There have been a few lows this week, but far more highs. So for once I may be losing on the swings, but I’m winning on the roundabouts….. I am struggling somewhat with names for the people who’ve been so good to me, part of me would like to use their real names, the other part wants to protect their identity and that’s the part I’ve gone through. I hope they know who they are, and I hope they know how much we appreciate all the help we’ve been given.

Saturday 1^st / Sunday 2^nd

Finally a half decent nights sleep with around 5 hours of uninterrupted kip, the most in one go for ages. It was a strange night, all the staff were new to me and it took a while to warm to them, but a few very kind words and a bit of advice from a Polish nurse turned my night around from a weepy wreck to a more positive outlook. She suggested that I asked the Dr’s to move rooms as she could see I wasn’t getting enough sleep and that I was becoming emotional about the issue. So, I wrote a long note, passed it to the Dr. who was on the morning round and he agreed that it would be in my best interests to be moved to a single room. The only downside being that there possibly wasn’t one available until the beginning of the week. So I settled down resigned to spending a couple more nights with Roomie and after the Dr’s rounds had finished I managed to tune into the Lions 2^nd Test down in NZ, catching the last few minutes of the first half and all of the nail biting second period. What I would give to be able to get out for a couple of hours next Saturday to watch the deciding test back at OBR……. Maybe, just maybe I’ll ask if it’s possible once I’ve had my swallow test on Thursday.

Both Anna and Max came over to see me early on Saturday. Anna on her way back up to Leeds and Max giving Carol a well needed day off from the drag to Oxford. We managed to go downstairs to the coffee shop and I sneaked outside for a couple of minutes, oh the feel of fresh air on my face, it was wonderful. We were only off the ward for probably 10 minutes, I needed to get back to give “Larry” a clear, but it was a start, a start to getting back to normality perhaps. 

At around 5pm I was lying on my bed dozing, when in walked another of the wonderful Polish nurses, with the best news of the day. I was moving, there and then to a single room further down the corridor. It was almost like moving house as I settled into my new abode, making it as homely as possible. It’s quiet, it’s away from the nurses station, it’s actually better than some hotels I’ve stayed in too!

The final piece of good news for the day came via a FB message from someone who’s been following this blog via a mutual friend. It turns out that her father had RT and Chemo, then a Larry fitter about 3 years ago. I picked and picked at her brain for how he’s coping, can he eat, drink, talk? The answers are basically yes to all those questions. She was kind enough to pass on his email address to me, so when I’m out I’m going to drop him a line and see if we can meet up for a chat. Apparently there is a monthly meeting of “Larry” wearers organised via H&NC RBH, I get the feeling I’ll be making a guest appearance. I wonder if it’s like AA. Do you arrive and say,  “Hello, my name is Paul, I’ve got a Larry?”…… I wonder what the collective noun for a group of Larry’s is? Perhaps a flock, or how about a Grayson?

The difference is having a single room is amazing, I settled down to sleep around 9.30 on Sunday evening, woke at 10.30 for an injection, again at 1am to clear Larry and then slept straight through until 5.30am. Waking up for the first time in a week feeling vaguely refreshed was superb. A full strip wash and total change of clothes set me up for the day. One side effect of the Op. is that I’ve temporarily lost my sense of smell, so I’ve probably been rather “High” despite my best efforts to keep clean, it’s a challenge when I can’t have a shower or bath yet as I’ve still got a drain in.

The Dr. I saw on Sunday morning is probably a rival for Cool Dude back at RBH, a very personable chap who was quite happy to answer any of my stupid questions. My question on Sunday was could I have the drain removed yet? His answer was “No”. Oh well….. He did warn me that the four days running up to the swallow test on Thursday will be very boring for me. Other than getting the drain removed, and hopefully the staples in my neck too, there’s not a lot else they can do with me. There’s only a certain number of episodes of House of Cards you can watch in one day, only a certain number of book chapters you can read, only a certain number of songs you can listen to on an iPod, before boredom sets in big time. So it’s been a case of trying to keep as busy as possible in as many different ways as possible.

A pleasant and relaxing afternoon was spent with Carol. We managed to get outside for a few minutes which was great, albeit a tad hot and I’d imagine getting the stoma burnt would be a pretty stupid thing to do this early on in. Later in the afternoon two friends we originally met from rugby popped in, they’re currently walking the Thames, all the way from London to its source. This weekend was the Oxford leg of the trek. I’m not entirely sure if they meant to visit me, or actually needed to go to A&E as they were both limping from their walking. Their names are, and I kid you not, Peter and Jane (That’ll mean more to some of the blog followers who’ve come via a certain FB page).

Monday 3^rd

Another half decent night’s sleep overnight on Sunday, only interrupted when the resident Italian Male Nurse crashed through the door to my room, missing his footing and making a rather spectacular entrance, I woke up quite quickly at this point. Sergio has been great with me so far, the patience of a saint in front of my silly questions, and really calls a spade a spade which is what you want. There’s no point in having false expectations of what could happen, you need to know what will happen. “Promise Long, deliver short” as my old Sub Manager at Lloyds Bank would have said. Sergio has been on the ward for about 5 of the 7 days to date that I’ve been an inmate. Getting to know the nursing staff is important to a patient, it allows trust to build up. 

One of the many key indicators that I’m able to go home will be how many times a day I have to clean Larry out. A healthy person (Not sure how healthy you are if you’ve had your voice box removed, but hey ho!) will probably change the filter between 3 to 5 times. On Sunday I had to change my filter 7 times, so a way to go yet, but encouragingly, for the first time I didn’t need to replace it overnight. Luckily (??) I’ll now get free prescriptions for the rest of my life due to the stoma. I’ve no idea what the cost of the filters is, but I doubt they’re cheap. I was reading up on the interwebby that it’s possible to buy special filters to use on the beach so that sand can’t get into the lungs, so I’ll be looking into that in more detail when I escape. Carol needs another holiday, and who am I to deny her that right?

My mind is in a better place as the week begins. At the time of writing I’m not half way through my stay yet, but the back is well and truly broken. If I can keep my emotions in check and look to the positives I’ll be fine. I don’t want to start looking too far ahead. I’ve small targets…

·         Get through the swallow test.

·         Have some solid(ish) food.

·         Have a cup of tea with two sugars (I don’t normally take sugar)

·         Get the feeding tube removed.

·         Get home.

·         Celebrate 32 years of being married to Carol.

·         Get up to FB7s for even a short time.

These targets spread over the next 10 days or so, I’m not going to look any further ahead.

A fairly long meeting with the Dr’s on Monday morning was all positive. He agreed that the final drain can now be removed which will help with my mobility. The staples in my neck will be removed on Thursday. Normally they’d come out after a week, but as I’ve had RT in the past the healing process can take a bit longer. So Thursday was going to be a full on day with Staple removal and Swallow test. I also had visits from the Dietician who’s going to up my daily calories to 2,500 and add in some fat content. She’s concerned that the weight is still dropping off me. She also appears to hold one of the keys to me getting out of here, so I’ll do whatever is needed. The final official visitor of the day was the Physio, she’s given me a course of 12 exercises to do to get my neck and shoulder movement back into some sort of order. Having had the muscles cut away means that at the moment it’s very painful to move my neck either up and down or side to side. The exercises are supposed to be done three times a day, I completed four sets of reps on Tuesday and really felt it, so I think I’ll stick to the advised three from now on in. My right shoulder has dropped slightly, again from the surgery, so I’ll need to make sure I work hard on that to get it back level. It’s damn sore when I walk for some reason. Unfortunately the Physio’s aren’t on the ward everyday so I’ll just have to wait until I see her again to get some specific exercises for the shoulder.

As usual Carol came over for a couple of hours in the afternoon, we chatted, read, listened to Wimbledon and I slept for a while. I was then a total and utter ass and I hated myself.

Another visitor from the world of Redingensians arrived later on Monday afternoon. Chris was quite happy to give me an all over bed bath, and after the Dr. making a total pigs ear of putting a new cannula in I could probably have done with one, but I gallantly declined. It was good of him to take the time to get over to Oxford and spend an hour or so trying to work out what the heck I was trying to say 😊 Chris is one of those sort of people who’s more than happy to put himself out for the benefit of others. Over the last couple of years I’ve grown to really trust Chris, he seems to have an inner feeling as to when things aren’t going great, and then saying just the right thing at just the right time.

Tuesday 4^th

I really struggled to sleep overnight, it was a warm one and for the first time since my Op I was feeling very thirsty in my mouth. I must have been up 4 or 5 times just to wash my mouth out with water, it was so tempting to take a quick swallow to quench the thirst. I discussed with Sergio last night as to whether I can have a shower today. It’s been a while since my last one and I must be starting to smell a bit by now despite my efforts with wet wipe strip washes. He’s agreed that it should be ok and briefed the day staff at handover. I had to wear a special bib so no water went down my stoma and into my lungs, but as I’ll need to do that for the rest of my life anyway, it was good to get used to it before going home. The shower was bliss…… better than sex, and it lasted longer 😉

My nurses on Tuesday were the original sister who I didn’t take to on day one as I was a moody bugger who just wanted things done. I should know by the age of 53 that my first impressions are usually rubbish! On Tuesday she spent a fair amount of time with me checking up on my progress, making sure I’m as independent as possible, and getting me ready to go home as quickly as possible.  She commented on how much better I looked than the last time she saw me, and to be honest, apart from some swelling around my jaw line, and a sodding big hole in my throat I don’t look too bad. Carol has bought in some polo tops, so when I’m not on the feeding machine I can wear roughly what I want so long as I keep Larry open to the elements. It’s amazing how good it feels to be wearing your own clothes and not hospital issued Jim Jams. Another step closer to normality, another step closer to going home. The other nurse is the student who seems to have worked every day or night since I was admitted. I’m not sure how much longer she has to complete her degree, but she’s going to make a darn good nurse. Little things like checking that the hospital issue pyjamas have buttons on them (most don’t) make the patient feel like a human being, rather than just an admission number. Making a point of putting a head round a door and saying hello…… Life skills that can’t be taught.

I’m beginning to get somewhat obsessed with what my first proper meal is going to be. I don’t mean whatever slush is pushed down my throat if I pass the swallow test. I mean the first meal I can cook myself when I’m home. At the moment I’m tossing up between either a fish pie or a quickly knocked up lasagne. Max gave me a small chalk board for Fathers Day, I was originally going to use it for communicating but thought it might get a bit messy having to wipe it down after each message. So it’s now sitting above my bed in the hospital acting as a menu board of the food I’d like the staff to bring me. So far we’ve had…… Bacon, Eggs and Black Pudding, Lasagne, Toad in the Hole, Liver and Bacon, Steak and Kidney Pie, Roast Pork and crackling…….

Wednesday 5^th

Sleep just wouldn’t play ball overnight, I’ve far too much on my mind ahead of Thursday and the “Swallow” Test. Sergio spent a while on Tuesday evening going through my discharge plan with me. Again, whilst the CNS Nurses have the final say, if I can pre-plan slightly I may get ahead of the game. It was good of him to do that for me. That’s two nurses now who’ve started to look at the escape plan with me, perhaps they just don’t want to feature in the blog that much.

It was a pretty quiet day all in all. Almost like Christmas Eve, waiting for the big day tomorrow. One “Amusing” episode was when I was visited by a young Dr. I’ve not seen before, he was about 4 foot tall so when he asked me to stand up so he could look at my neck……. He then asked how I was getting on with eating, despite a feeding tube sticking out of my nose! I felt a bit like they’d sent in a student to see how he’d interact with a real live patient, not sure he’s passed that module I’m afraid. He culminated his visit by poking the drain holes and asking if they were sore……

The afternoon, I’m afraid, isn’t worth describing in any detail here. I wasn’t in a great mood, the treatment I received wasn’t what I’ve come to expect, mistakes from all parties. Thursday was waiting on the horizon.

The highlight of a very low day was getting a text from Anna confirming she’s got a 2-1 in her degree from Lincoln Uni. She’s the first Clark to ever complete a University Degree. Carol, Max and I couldn’t be more proud of her. She’s worked so hard to achieve her goals and has turned into a very confident, capable and lovely young lady. (She was a horrible baby) 

Thursday 6^th

Two acts of kindness and my first ever go with a sleeping tablet meant that I woke up on Thursday morning in a far more positive frame of mind than when I left Wednesday. A decent shower, fresh clothes and I was ready for whatever the swallow test was going to throw at me.

Prior to the test though one of the young Dr’s who’s been on the ward rounds each morning I’ve been in asked if the Rams shirt I was wearing was from a local club. Turned out he’d played for Oxford Quins for a couple of seasons prior to packing in due to injury. The conversation turned to the Lions and my plan to escape for a couple of hours on Saturday to watch the match. He reckoned it was a good idea and would pass on the plan to Dr Fraser, my surgeon. Dr Fraser arrived by my bed within about 20 minutes, and confirmed that if I’ve passed the swallow test then she would be more than happy for me to have “Day Release” on Saturday – OBR here I come 😊

I was booked to have the swallow test at 2pm, by 2.20pm I was still on the ward and getting stressed to say the least. Eventually we made our way down to the x-ray Dept. where I was asked to stand on a shelf like thing which reminded me of the ramp Virgil used to get to Thunderbirds 2. Three different angles were taken whilst I swallowed a disgusting liquid. The outcome is that I’m water tight!! I was escorted down to the depths of the hospital for the test by a porter and an Aussie nurse from the ward. It was only when we were finished that we realised we might not know our way back to the ward. I was happy enough to just wing it, what’s the worst that could happen. However the x-ray technician gallantly offered to guide us back to safety, I have the feeling that he’d taken a shine to Sheila 😊

When Carol and Max arrived we took the trip down to the coffee shop where I sipped slowly on a bottle of Buxton, it tasted like nectar. The next step will be to progress to hot liquids, namely a cup of tea with two sugars! Due to the delay in going to have the test done it’s meant that I’ve missed seeing the Speech Therapist today, which means the tube stays in for another night. Oh well, C’est La Vie. 

However there were two final bits of good news to finish the day off. The cannula has now been removed once and for all, and all the staples are out and my head hasn’t fallen off. There were close on 50 staples in the neck, 49 of them came out with no problems, all I could feel was a very slight tug on the skin. The 50^th wasn’t going to come out at all, it liked my neck, it felt at home, so why on earth should it move. The poor nurse who’d done such a wonderful job on the first 49 was struggling against this little bastard. After a good 15 minutes of pulling, prodding, poking, sniping and swearing (by me) the sod finally gave up the ghost and popped out like George Michael on Hampstead Heath. The scaring looks much better than I expected and so long as I continue to make sure I look after it I don’t think it’s going to be quite as obvious as I first envisaged.

A friendly nurse (Is there any other sort?)  was looking after me on Thursday evening, she confirmed that the wheels were being put in motion for me to go for good. The District Nurse will be asked to visit once to make sure I’m coping. The Ambulance Service will be advised that I’ve got a Larry. My GP will be told and asked to put on bulk prescription all the everyday stuff I’m going to need to survive. God bless the NHS.

Friday 7^th

My days tend to start around 6am most mornings. I sit and write part of this blog whilst listening to the radio, usually BBC 5Live. This morning they were asking for reasons to feel confident ahead of the Lions test tomorrow, so I texted in that the Surgeon had agreed I could escape for a while, that’s got to be a good omen. Apparently the text was read out, but by that time I was on my House of Cards daily fix.

If today was sponsored by a brewery it would be a Carlsberg day. My surgeon came to see me first thing in the morning. She was very pleased with the way the swallow test had gone and was now looking at me to start eating. She then threw in the most beautiful curve ball. The pathology results are back. They confirm that the cancer had started to eat away at the cartilage in my neck, much more than was shown on the scan, so the Op. was totally necessary to save my life. The pathology results also show that she got ALL OF THE BASTARD OUT  - I’m cancer free.

The speech therapist swiftly followed, so I was still pretty emotional when we started on the next stage of recovery. She produced a rather unattractive looking fruit puree for me to try and surprisingly enough I could taste it. Ok, I didn’t really like it, but I could taste. Next up was the process of starting to learn how to speak, a few tweaks to Larry and I’ve managed a few proper croaks, steps in the right direction, but this is going to be a tough one. By late afternoon I’d managed “Hello”, “Bye bye” and “Of feck” – not sure I need much more in my vocabulary.

My room was beginning to be like Piccadilly Circus at rush hour. My very kind Polish nurse had noticed I was a tad emotional and called in the nurse who’s probably looked after me more than anyone else so far, before I had a chance to explain that my tears were of happiness in walked Yun the CNS Nurse…… blimey, can a man get no peace and quiet? 😊 at this point I hadn’t even had a shower and was still dressed just in my Rams shorts and a smile.

My lunch duly arrived spot on midday, my dietician has said if I can eat all lunch and dinner then the feeding tube might be removed this evening. Well, lunch was a large bowl of mushroom soup, heated to roughly the same heat as the earth’s core. Main course was supposedly fish pie, but I wasn’t convinced. Pudding of crème caramel and ice cream. All at portion sizes that you’d expect a healthy bloke to eat. I reckon I got about ¾ of the way through the lot of it before having to admit defeat. Hospital food has improved since my last long stay when I was 19, but it still isn’t the most appetising.

Yun reappeared in the afternoon, she’s like a stealth nurse, I never hear her coming. We ran through loads of safety related stuff, all very common sense but necessary to know. I’ve various forms to fill in when I get home, but it will be when I get home. I just want to stick my feet up and relax for the rest of the afternoon with TMS playing in the background.  

I know that this week’s writing has been “All about me” but there’s so much more to it than just me. Carol has been over every day and has put up with me being in a shoite mood at times. Max has been supporting his mum big time, and had to see me at some pretty low points. Kids shouldn’t have to see their parents in pain. Anna is 150 miles away, and isn’t able to be hands on, but she’s speaking to Carol daily and sending me links to fluffy cat videos on FB to cheer me up. They are my family and I couldn’t ask for a better bunch to be on my side.

As always, thank you so much for reading this blog. I really do appreciate all the comments that come in either via the blog or by FB.

To be continued……..

#Shoulder2Shoulder

PS – To my friends Graeme, Claire, Shaun, Eileen and Craig who are down in NZ. Please scream until you sound like me for that one final win 😊