My Journey is coming to an end

 IN A GOOD WAY!

so over the past week its been good news, finally getting to a point where I can get on with living and enjoying life once again.

I have to admit I did not realise the inner strength I have had to get through this, tough is an understated word in this context, its been brutal and you need all the strength and belief in yourself to get through this.

 I think I may mentioned earlier the letter I got outlining what I would go through and thinking then that in words it sounded worse than when Prof. Winter explained everything to me in our meeting. Well I think I can honestly say its been traumatic - you question has it been worth it, there is an obvious answer of course but when the odds of this particular cancer returning within 5 years and what you might have to go through then, even if they will do anything is a difficult thought to take in. I would always choose to fight and live as long as I can to be with my family and give them as much as I possibly can whilst I still can.

So to the good news:

First it looks like my jaw surgery has worked and I'll find out on Thursday this week, the jaw feels much better and it has improved my swallowing, you wouldn't think a slight misalignment would make that much difference but oh yes - huge!

I've finished these antibiotics finally, that was weird, with weird thoughts and almost feeling depressed, so good to be off them

Been to the endocrine clinic today and basically have been told that they are not even sure if there is a tumour in my thyroid, so nothing to do, except over time now this will be reviewed as I have scans on my neck.

I start my lymphoedema recovery in a couple of weeks which will also help with my swallowing and to reduce the swelling in my neck, this is initially for 6 weeks but sound like it then reduces down but may continue for a while, we'll have to wait and see 😊

But, the best news, my cancer has gone, they have cleared it, and the MRI showed it was clear, the health warning is continual monitoring, which is fine, every month, then maybe every 3 months and so on, so can really start getting back to normal without this cloud hanging over me.

I will continue to post from time to time, but feel that as this journey ends I will start a new one back in the real world, and enjoying every minute of life, remembering that from here on in, everyday is special and to be enjoyed.

so, to all those that have followed this blog, thanks for your interest, I appreciate you taking the time to read this story, and for anyone who maybe suffering with cancer I hope this helps you in some way

THANKS! 💙😍

23rd October 2025

 The day arrives, in what seems to have been a very long week, but I feel positive and want too get this over and done with. I will be staying in hospital overnight which is ok, I know the ward so all good!

Arrive at the Churchill Hospital for 11:00, am ushered straight through to the prep area, and see the anaesthetist who walks me through the procedure in detail.

I then see the Maxilla-facial registrar who explains in great detail (which is really good) the whole operation and what to expect. He makes it clear they will not be removing any teeth but will try and reposition them if they can, the primary objective is to fix the jaw and realign it.

This is more complex for a couple of reasons, 1. the infection I had they need to ensure this is cleared away and may have damaged the bone, 2. because I have had radiotherapy before this could slowdown the healing process and again cause infection, the last thing you want and can easily get exposed to from this is osteonecrosis so again things to be considered during the procedure

13:15 I'm off to the theatre, walk down which is always a bit intimidating, down a narrow corridor, loads of surgeons waiting at various theatres for there next "victim" 😂😂 and I arrive at theatre 3 - the theatre is setup where you only see the anaesthetists suite, they get you laid down, talk through what's going to happen, put the local in your nose and mouth so they can insert the breathing tube easier - this has to go down through my nose as they are obviously working around my mouth. They the put the sedation in followed by the anaesthetic and thats the last your remember

17:00 I come round in the recovery area, I've been here before, but its quite overpowering as there is a lot going on, a lot of people in there, nurses milling around looking seriously at screens. My recovery nurse is Anya, a lovely Polish girl who takes care of me, she tells me about where she is from and the lovely city it is and we talk about the salt mines in Krakow which she shows me pictures of that are stunning. I nurse comes in from the ward, not a very pleasant young lady after a couple of hours who happily tells me I won't be her patient but that I'll go to the ward shortly, she didn't give a shit! and I guess she was playing for time as the ward shift changes at 20:00 and she obviously couldn't be arsed to take in a new patient. the good news is I know the ward sister who is on the nightshift and she is lovely, so no lose really

21:00 Get transferred to the ward, where I am looked after by a lovely nurse Susan who actually looked after me before, she is very nice and very helpful. The one difference I have noticed this time around is the pain! loads of it FFS! but she sorts me out with codine and some other stuff (name escapes me) which reduces the pain but I can't sleep, I think its something about being in hospital with me, but I am up and about go for a pee which is always a good sign and take a walk down thew corridor without any issues

I doze on and off for a few hours, have more drugs, sit up in the chair, read my book, have a feed through my tube.

Mr Prabhu comes and sees me later in the morning, tells me all went well and its important to now move my jaw as least a possible to help with the healing, he tells me to organise for my stitches to be removed on the 4th November and to see him for a followup on the 13th and that in the afternoon around 17:00 after I have had two more rounds of antibiotics I can go home.

Carol, picks me up around 17:00, I have more drugs to take now with some heavy hitting antibiotics and pain relief, the pain has been pretty strong, far more noticeable than last time and I can feel every movement. But, the good news is my swallowing seems to be way improved as one of the drugs I have to swallow and can't crush and put through the tube.

One thing I checked on my app (My Friend in case you've forgotten 😜) was if there is a misalignment with your jaw does this cause swallowing problems and this was the answer: "when the jaw doesn't fuse properly or is out of alignment, it can indeed lead to difficulties with swallowing, among other issues. Misalignment can affect how the muscles and joints work together potentially leading to discomfort or problems with chewing and swallowing" Pretty good answer don't you think, imagine trying to get that answer through the 100+ pages you'd get shit on this from Google 😜, the nice thing though is it also tells you to discuss with your surgeon or your healthcare specialist.

So I am hoping going forward my swallowing will now improve a lot I can start to chew food and move onto the next stage of getting rid of this PEG (feeding tube) as its a real drain on your morale and spirits. I have been told not to eat or drink anything for two weeks whilst this heals, and I can't wait to get past this stage now.

Over the last few days the pain has subsided to where I am taking just paracetamol a couple of times a day which is a marked improvement even before surgery, but I am not on a a really strong antibiotic with loads of potential side effects that makes me nervous, its called ciprofloxacin, which they prescribed over the weekend based on the "bug" they found from the plate they removed, so pretty heavyweight drug along with loads of others, anyway so far so good with no effects, lets hope it stays that way

Until next time....thnaks for reading 

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