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

(Or not as the case may be…..)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As always, thanks for reading.

To be continued………

#Shoulder2Shoulder