“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