Moving on, with lots going on!

 Since my last post a lot has happened and adds to the reason for the sporadic posts these days.

Back to 25th September 2025

I saw Prof. winter and Mr Prabhu (maxilla-facial surgeon) and then went on to see Mr Wilson an oral dentist surgeon. They all agreed that further surgery was required to allow the jaw to realign, but also as this movement had caused a number of my lower teeth to die off they would need to be removed.

The first stage is to remove the existing plate, insert a new stronger (bigger) plate to hold the jaw in place to heal and then evaluate the teeth and what needed to be done with them

1st October

Had my follow up MRI - awaiting the latest results of this

9th October

Had the walk through of the surgery plan with Prof. winter and Mr Prabhu, which pretty much agreed as they had told me earlier, with a date set for the 15th October, so have a date and just look forward to getting this done and moving on with recovery and getting to the end of this shitty year and back into the real world.

I felt that I have missed this year completely as your mind is just focused on getting through this and trying to see the light at the end of the tunnel, with this next step I hope that I can see through the trees and can move on 

15th October

So had the call yesterday to be at the hospital for 11:00am, to which we promptly arrive about 15 minutes early, we wait, and wait, get prep'd for surgery, see the anathaetist and wait, finally they come and tell us that the surgery will have to be cancelled to to complications in an ongoing surgery, after 8 hours! its a bit frustrating but understandable, there is not much you can do when someone else is having a complications and absolutely that needs to be the priority, so yes frustrated, disappointed but have been told it will be a week later.

Mr Prabhu calls me when he is out of the surgery at like 19;30 so he has had a long day, and apologises for the cancellation but assures me that I'll be first on the afternoon list on the 23rd October, so I have a week to wait - thats OK 👍

Nearly the end of September

 and where am I at.....

Well to be honest I am not really sure at the moment! The infection I had has now cleared and my chin no longer looks like a beacon on a lighthouse, but here's the thing it was a mess and it didn't end with just an infection, but I also pulled this out of my chin! what do you think? pretty horrendous really

Yes you've guessed it! its a screw and a bracket. This is pulled out of my jaw as it started to come through my skin and was no doubt something to do with the infection I had.

I saw the doctors who have also told me that my jaw has not fused back together and my teeth are now out of alignment 😝

So you may wonder what they are going to do about it, well based on the fact they have had a look and told me this and there apparent urgent approach to discuss with the max-fax and dental teams its a big NOTHING!

Now I accept that the infection needs to dissipate, but they have the CT Scan a few weeks ago and was expecting a follow up, but no, instead I have a standing appointment this week, where no doubt as in the past it will be loads of what they are thinking and something will happen in another month or so, not ideal as not only was my summer vacation fucked up as I was told to stay home in case I had to go into hospital (which never happened) but this could now screw up my Christmas depending on what if any course of action they take!!!

I have in essence a broken jaw (as its not fused), I have teeth that don't align in my mouth with a bridge that has been loose for months which means I can't chew, and the dental team don't respond, the max-fax team pass it off as a normal thing to happen - which of course it must be normal to pull screws out of your chin!! So, as you can probably read I am not best happy about this situation and for the first time I feel let down by this team - maybe I will be enlightened with a plan on Thursday when I finally see them and the dental guys, but not holding my breath as I am sure it will need further follow up even though by now they should have a plan.

On the plus side, I am beginning to explore more food options, generally liquidised but at least getting some swallowing practice as well as exercises to strengthen my muscles in my throat they do seem to be working even after a few days. Hopefully, once I can chew properly again this will become lot easier and more enjoyable

So lets see what the doc's say this week

A lot has been happening

 Since my last post a lot has been going on!

First I have had two  sessions with the Speech Therapy team which has been positive, I had a very painful test of seeing what I could drink with a camera shoved up my nose and down my throat to monitor different thicknesses of fluid, the end result was positive - no aspiration, no pooling, so a big step forward

I was advised there is a very small risk of a chest infection with liquids going into my airway, to date no problem, I outlined that I am more of a high risk person and when asked the therapist what she would do it was a great answer "I am a high risk taker as well and in my view fuck it just go for it" had to laugh, so yeah I have:

Coffee - ok

Wine - not good, off the taste for now, fizzy is a bit better but don't really enjoy that

Tea - no

gazpacho - love it and strangely is the easiest thing to swallow

Hot Chocolate - like it, but is more difficult to swallow

Yoghurt - have to take my time but is good

Weetabix - yes weetabix, mushed up with milk works quite well

So, progress, and my weight is down to 92kgs which I think is good but not sure the Doc's will 😝 so overall I have lost 11kgs and yes I was way to heavy so whilst its not a good diet it is making me healthier now and a lot of the clothes I was going to chuck now fit me again, so always an upside 😂😂

And of course the big event, my daughters wedding has taken place and was amazing, a great day and she looked beautiful.

only downside was I had a complete meltdown after the video of my speech was played and couldn't read my planned update, the emotions I think of everything, the day, what I am going through was just to much, anyway Carol stepped in and managed to read it out whilst correcting my grammar along the way.

But, a great day and the thought is that I may not have made it, but here I am still kicking around seeing my family continue to grow into the wonderful people that they are. I am blessed with an amazing family, not just my own but the whole family, brother/sister-in-laws, nieces and nephews, and their kids, its a wonderful group of people.

The outcome after the wedding is not so good. O the Sunday I noticed, well you couldn't miss it was a huge red lump the size of a golf ball on my chin

First thing Monday, called the GP who saw me pretty much straight away and confirmed it was an infection, so prescribed antibiotics, which I started immediately, the following morning in the shower the thing opened and OMG the shit that came out was very unpleasant.

I had also emailed my surgeon just to advise and he asked me to come in and see them which I did on the Thursday.

Saw his "Fellow" as they are known or basically his second in command, who said it was one of possibly two things

It could be my implant that was inserted when I had my previous cancer, especially as the bridge at the forward part of my mouth has become loose, but also the tooth next to this is now loose so they move, which is all around the cut they made through my jawbone as part of the op

Or, its an infection around the plate put in to join the jaw back together, if this has to be removed it is a lot more complex and needs surgery, so headed of for an x-ray of my jaw and await the next steps. at one point it looked like they may admit me, but as I am reasonably fir and healthy and the infection was "oozing" meant they didn't need to, but was advised not to go on holiday to France and they will try and make an appointment for me to see the dental team ASAP first and go from there.

So all the family are now in France and I hope that are having a fantastic time, I also convinced Carol to go, she needs so rest and a break and to enjoy her family while I get this sorted.

The good news is the swelling has gone down massively, although this crap is still pouring out hence the "make-do" plaster, but I realise it was affecting me as I feel much better mentally and there is far less pain

So next step is an update of the x-ray tomorrow and the probably back to the hospital, hopefully this week to see the dental team and then possibly the maxilla-facial surgeons for the next stage of this journey if indeed it is the plate and they have to remove it

The puzzling thins is I have no idea how this infection came about, but was obviously from the inside not outside forces, but it make me very wary especially when getting something like osteonecrosis is 

1. very serious condition, 

2. adds massive complication as in essence the jaw bone starts to crumble and die, it is known also as death jaw, which can kill you very quickly so its an avoid at all costs and having just gone through all this shit I do not have any plan to die just yet!

First sips of water

 It sounds like a strange thing to say, but I am now sipping water and have been for the past week.

What's strange is what used to be normal no longer is, it's like I am having to learn how to swallow again and it's not easy. Obviously there is still a lot of swelling in my mouth and neck, especially my tongue which is reducing but still quite obviously swollen, likewise my neck still have swelling but it's also very solid despite exercising it everyday!

The other problem is the loose implant, as this really seems to affect the balance of my mouth, I do now have an appointment with a dental surgeon to look at this but not until the end of September 😝😟

I also now have an appointment with the Thyroid surgeon (end of October) which hopefully when I see him he can decide what's needed as all swelling by then I am hoping has gone, but I guess I'll have to wait and see, after the length of the surgery I am not clear how long the swelling will actually take to disappear - I have been told recovery can be up to six months - just in time for Christmas!

I am waiting to see the speech therapist as this has moved from Oxford NHS to Bucks NHS which I think must go over snail mail as haven't heard anything yet and could really do with getting on with this.

With my swallowing (and I'm sure others going through this must feel the same), I seem to have an inordinate amount of saliva when I am taking sips of water, I'm assuming this is normal, but even the smallest sip seems to generate 2-3 times as much saliva

And this is me today 7 weeks after the op, as you can see my trachy "hole" has completely healed and most of the swelling on the left side of my neck has gone. the right side still has a way to go, but again this is reducing.

I am hoping within the next week this will subside more and I am looking fighting fit for my daughters wedding, where I am pleased to say I will now speak as well as show the video I prepared earlier. I am excited and pleased to be able to do this as it is a very special and proud moment, one that I thought I may not make and certainly wouldn't have made the original date in July.

My fitness is getting better and I do feel stronger and now that I am back in the gym hopefully over the coming weeks and months this will improve.

Next steps for me - when can I drink something (Coffee) other than water, will I be able to sip a glass of wine at the wedding - well I will try and then obviously how do I move to eating real food - the protein drink stuff is so dull! and finally and probably not for a few months yet when can I get this PEG feeding tube out of my stomach, it doesn't really bother me now but that will be a huge "gate" to go through and I will know I am almost back to normal

Until next time stay healthy and safe

All been quiet

 Sorry for the quietness around what's been going on but since Sherlock passed away its been difficult to concentrate on what to update on, but there are a few things that have happened over the past couple of weeks, which has been mainly positive!

14th July 2025

Had my second "leak" test where they check how well you are swallowing, the last one wasn't so good as I had a hole into my jaw and an airway aspiration, so it failed 😝

This time around was much better, the hole had healed and my airway aspiration was much less to the extent the radiographer thought it would be fine. So then it was just a waiting game until the 24th (see below) when I had my appointment with Prof. Winter

Been having a few friends drop in which has been really lovely and so nice to see people and have a chat, you know who you are and thank you, I really appreciate the time and effort you have put in to come and see me so thank you I really appreciate it.

18th July 2025

Picked up Sherlocks ashes today, and it just bring's back all the emotions of losing a good friend, very upsetting and the thought really comes home that he is no longer around, I miss him so much everyday and I think his bro & sis do as well, the house has been so quiet. He was a big presence, but he is home now and we'll ensure he rests in peace.

Also, had a catch up with my GP, which was really useful and he upped my paracetamol and suggested a few other things to sort out my bowels

24th July 2025

Off to the Churchill Hospital and the Blenheim Head & Neck outpatients for my appointment with Prof. Winter, as usual they check your height and weight, and from my peak weight I am 8kgs lighter so not to bad that anyone is going to look a piling more calories down me with these shit shakes you have to take - on that subject my diet now consists of shakes and drugs!

7 shakes 125ml per day

8 paracetamol per day

2 of another drug every night, got a long name which I can never remember 

I'm also taking a daily laxative as these shakes bung you up big time - not the best subject but the important thing when you have cancer or recovering from, it is you keep your bowels working otherwise you can get all sorts of other problems!

Anyway, back to our appointment;

They are very pleased with the progress I have made, and he explains it's now all about the second phase of recovery and really pressing on with that. the good news is that the "leak" test was good enough that I can start drinking "sips" of water - for me this is a massive step and not one you would really think of being that important, but trust me it is, one reason is you know you are moving in the right direction albeit small steps, the other is to get the muscles in your mouth and throat to start working again.

There is still a lot of swelling but as this goes down so it will all become easier, it may take 6 months but its going in the right direction.

Finally some good and not so good news - The got the whole tumour, the cancer has gone, which is a huge relief and if I could drink it would have been worth a glass of champagne - will just have to wait to celebrate that

The not so good news is they found an 8mm tumour on my thyroid gland, but they have emphasised this is not an issue that it can be managed and a decision can be made as to treatment once I am over this current battle, so we'll park it, move on until we need to face the music on it, so no need to worry I have confidence in the Prof. as I am sure if it was a problem he would deal with it quickly

But the important news is my current cancer is gone and that is worth knowing as I can start to rebuild my daily routines, doing my work, get back in the gym, walk my dogs, socialise more with my grandkids and the rest of my family, go off on our family holiday which we've been worrying whether I would be able to go or not, but Prof. gave the green light and said it would be a good break which I agree with - so off to France at the end of August, on the train so should be nice a relaxing 👍

I see the Prof. again in a month, will have further scans in a couple of months and I now pick up with the speech therapist who will help with my swallowing, drinking and eating, so this is the next stage to bash through

A VERY SAD DAY

 12th July 2025

Today is one of the saddest days of my life, my wonderful, beautiful Basset Hound Sherlock passed away, I can't even start to tell you what a loss he is and the hole he leaves is huge. I am absolutely devastated.

Not only that but I needed him more than you would know, he helped me so much through my first bout of cancer and he helped give me that fight to get through it, and I needed him this time so much. 

He was such a gentle soul, an easy going laid back dog, always up to mischief and a real pain in the arse at times, but he was my pain in the arse and I loved him so much. I will never forget him.

At the vets as we said our goodbyes he lifted his head to me as if to acknowledge me, it was one of the most touching things I have ever felt, he then laid back down and slowly slipped away. 

We took Jackson up to see him and to say his goodbyes which again was very moving but also strange in how he didn't really recognise him or understand what was going on with his bro'

We are absolutely lost without him, he was such a big part of our family and can never be replaced, he was with us for over 13+ years, he came back from South Africa with us where we originally bought him from a pet shop in Morningside Mall, that we had to act quickly to get him as another couple were also interested him, but once I picked him up he was never going anywhere but home with us.

So many stories as well, like the night they escaped and ended up in the police station and the picture the police officer sent summed up Sherlock, laying by his feet, eating all the snacks, he certainly loved his food

He was always so pleased to see you especially if I had been away travelling for a while and made it such a joy to see him when you returned home, and the same if you picked him up from the kennels after a holiday, just loved us so much as we loved him

Rest in Peace my friend and I hope its true that dogs come back in a different life because you deserve to and to give your love and happiness to another family, just wish it could be us again.

28th June - 5th July

 Monday comes along and loads of positive talk about going home. The final drain is removed so another big hurdle gone!

All the chat about going home continues, My good friend Angela pops in and we can actually go downstairs to the cafe, where I get a call to say that I can go home - yippee I think, so get back to the ward and pretty much everything is prepared to go....except

One of the surgeons turns up who has had a further look at the hole in my mouth and is not happy, so now not going home, they plug it overnight and want to check the results in the morning which seems reasonable. The following day they have another look, the hole is still there surprise surprise, but now after much debate I can go home.

Kendal has come to see me and it now becomes a bit annoying with the details around going home. To start with the discharge has been a joke!

A young student nurse is sent over to tell me I can go home and have to leave now as they now need the bed, so no bedside manner and I now feel I am being sent home as its convenient to the ward and not necessarily convenient to me, so I'm a bit pissed off to say the least. sThe convo is confirm I can go mow and my daughter will take me home or I'm here until 4pm when my wife can get here!

When the ward sister comes over to my bed to organise the discharge I provide her with my thoughts on this and that its not very satisfactory, she gives me some lame excuses and we pack up ready to go, and thats it, my time in hospital is over - certainly a journey good and bad but on my way home and I feel. much better within myself, be in my own home, see my dogs and have my loving wife to help me, much better situation in my book! Still a long way to go but I think my recovery will be easier at home, loads of appointments being setup and I'll touch on these as they come up

   Tuesday 1st July 2025 a big day 

Arrive home and it does feel good, Carol has setup our downstairs room which is much easier for me and also next to our shower/toilet room , I already feel a lot better, and we'll obviously see how things go in the following days, but feeling good at the moment