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