Even after all this time?

 Hello,

Anyone still reading this? Probably not, but it lets me put down some thoughts from time to time whenever the subject of cancer crops up.

I lost my mum in June 2024 to a combination of COPD and lung cancer. Her lungs were basically buggered from years of smoking, and the addition of lung cancer just after she hit her 80s just didn't give her a chance, her lungs were done, the cancer never got to full fury, but what lung capacity she had, it grabbed from her.

I didn't write about it at the time, it hurt a bit too much, but I wanted to put a few thoughts down and also detail some of the outcomes of that.

I sat with her in her hospice care as she slipped away. She wasn't comfortable, as people often say, but she wasn't in terrible pain so her meds were mostly to calm her down a bit. She just got tired and faded away in a bed she wasn't able to escape from due to growing weakness. There were a few bouts of hallucinations and confusion/paranoia, but mostly she was angry and grumpy and fed up and scared. 

I can't shake the feeling even now that basically she died of malnutrition and dehydration, hospice care isn't about prolonging the life, just managing the process of dying, so there was no intervention like drips and feeding tubes when she started to lose her appetite and unable to hold a glass.. Even when we put it in kiddy cups with straws. No amount of persuasion could convince her to have another teaspoon of scramble egg... she was done with eating.

She was tough though, she was expected to last a week or 2, when admitted, but lasted far longer...I ferried over from Netherlands to England to take turns with my brother Colin and spent as much time with her as I could in shifts, sitting or sleeping next to her bed. 

She confounded the docs, by making it to her 83rd birthday, finally passing away a few weeks later, as I had left the room for a few minutes to make myself a coffee.... I came back in, sat down and realized she wasn't sleeping, she had gone... I honestly think she was waiting for me to leave the room so she could go... 

Losing a parent is hard, especially my favorite one, I never was close to my dad, who also died of cancer...Prostate in his case...some years before in his 70s. We were estranged for years, not really due to any great animosity or incident, we just didn't really get on with each other and didn't go out of our way to meet up. When I moved away from Scotland, the chances to meet up vanished and I wasn't especially troubled by that. I can probably write a book about what was wrong with my relationship with him, but who'd read it?

Mum though, I had kept in touch with all my adult life, she moved to England when I did, and was always around through good and many bad times... An independent resourceful women, but also kinda unlucky in her choice of men, eventually giving up on them as a waste of time. 

But she was the paramount grumpy old lady I hope one day that I can be half as grumpy. I miss her very much.

The time I spent with her as we went from chuckling conversations, to deep talks about life and dying, then long quiet times, gave me a lot of time to consider and think about the future. 

My wife and I had a fair idea of what we were going to do when we retire but that was 7 years away at least, maybe more if he wanted to keep the house and pay the mortgage.

I'll cut to the chase, at 60, and losing mum, I finally realised, finally, why did it take that long? That life is unpredictable and short. If we use genetics as any kind of marker, I might live as long as mum, so I had 20 years left. I had cancer once, and a few kinda risky illnesses and one disagreement with a car as I walked out onto its road, in my past.. But at anytime life can be over.. 

I started to work out the maths, how much was our house worth, even with the 200K left on the mortgage, 500-600K? hmmm there's some equity... is it enough? More maths, and yes, though it depends where? Spain, Greece, Portugal? not really... We needed to look further. Thailand, my wife Jirawan is from Thailand and we visited a few times and I liked it, but she had left  12 years before, did she want to go back?

I spoke with Jirawan, and she was a bit reluctant, not so much about Thailand itself, but timing, leaving before we'd put a full pension together was a risk, and I wouldn't be able to work in Thailand...But at 67 I get UK pension, about a 3rd Dutch State pension and 17years worth of company pension... which in total, is actually quite a lot...but only at 67

I showed her the numbers, and she agreed it could be done and that we'd live well if we could get a good price for the house and also all the stuff we'd have to sell to allow us to travel.. We started our plans.

So... the point of the "Even after all this time"... In Dec 2025, We moved to Thailand, sold the house, sold all our goods (including most of my prized guitars) and landed in Chiang Mai.. 

Thailand is lovely, really, but... I needed health insurance... there's a very good public system here, which I am allowed to use but have to pay for, and tbh its quite affordable as long as its not for anything massive, like emergency surgery, transplants or....hospice care.. which can be pricey..
So I sought out private health insurance... and managed to find a few options... all but one, refused to cover me for cancer, any type...luckily one did but.. no squamous cell carcinoma, which is the cancer I had... even after 16 years this month, its a pre-existing condition and they won't cover it.

Even after all this time....the cancer still fights back.... 

And as much as it helps people who want to cling to every minute, I am never going to go into hospice care... if my life is going to end.. I'll take steps while I am able..

In the meantime, its time to enjoy the next 20 years, try to make it 30 and enjoy living.

And back to sleep

Nothing to see here, Dr Jan was not at all concerned, the bump is a tiny bit of root debris from the extraction, it will form a small lump and in time settle down.. no need for a biopsy or any intervention. All is well.

So, 15years later, I get another all clear and move on to the next stage of life, retirement and old age.. every day is a bonus.

I will still make a point of checking and double checking my various bits and bobs for lumps and bumps, and even if it does mean a wasted trip to the hospital sometimes, its always worth checking. Cancer often likes to have a 2nd attempt, so check yourself out.

I don't update this unless something happens, so, lets hope no more updates are needed again.

take care of yourself.

Thats a bit more worrying

After the tiny scare we have something a bit more substantial to  worry about. After another extraction of a rear molar, not due to radiation though, just wear and tear on an old unloved crown that didn't take... 

I have a lump.

A tangable very clear, slightly tender lump that may have been obscured for a while with the old tooth.. OR... there is an OR, may have come up as a result of the actual removal of the tooth, which is possible due to a bit of bone damage, but would normally settle after a week or 2... 4 weeks later, it still there still a very clear lump.

So back to see Dr Jan,  Thursday morning... get a biopsy and settle my fears.

There was a tiny scare

 Hi reader.

There can really only be one now, are blogs still a thing?

5 years or so? Well I've had nothing new to report, no more treatment related issues, I've got used to false teeth and had a nicer lighter set made after losing the last ones... No real issues other than the usual, gritty things get under your plate and don't eat toffee; complaints everyone else gets.

I still have little niggles of sore gums and my dead lip makes me lisp or spit a bit, but nothing new.

But I did get a tiny scare a month or so back, when the dentist got a bit stressed out due to a white mark on my gum, that refused to fade away, wasn't raised or sore, just a white mark.  He suspected a fungal infection but when I changed mouthwashes and it still didn't go, he sent me off to my old surgeon, just to be sure.... which raised a few small red flags.

I asked are you saying it might be.. and he honestly said, I don't know but given your history we must make sure. gulp.

My history....15 years ago... hmm ok, but it did put a tiny bit of wind up my sails... and I went to see Dr van Geemart again for the 1st time in over 10 years.. He's a little older but still his cheery self.  Only partly remembered me and was reminiscing about when he was able to do ops in the Breda Hospital, it seems they don't do that anymore he has to do them in Tilburg now.

But he had a look and, was very happy, it apparently is nothing more than me being a bit too vigorous while brushing and creating a bit of a callous over that part of my gum. Use softer brushes..

Phew... nothing to worry about... but its easy to get stressed out isn't it.

See you in another 5 years... 

Bye bye loose canine

yeah it went....got progressivly looser and I managed to pull it out myself.

I'll give it a week or 2 to  heal up then go see the dentist and check if the one remaining tooth is going to stay stable enough to anchor some new falsies to it.


bummer eh... but small prices to pay.


10 years this year, since the surgery...I have done rather well, it pains me though to hear of others with similar or even lesser oral cancers having life threatening situations. I got off relatively light..

More teeth gone and added??

Well, hello... been a while?

Don't panic, there's nothing major to report, just the fact that my radiotherapy and/or reduction in blood flow has finally taken its toll on my front teeth, with a total of 3 now. 3 Bottom incisors gone, 2 fell out on their own, the dentist removed the 3rd before it went, to allow her to have somehing solid to build a set of false teeth. There's still a good chance I will also lose my right bottom canine as its become a little painful since the false bridge was fitted and I wear it as much for cosmetic reasons as I do for support of that tooth.
Oh I also had my wisdom tooth above the surgical site removed while I was there (no they didn't have a 2 for 1 deal), this has made opening wide a bit easier and yawns a bit less painful.

No implants possible unfortunatly, the bone is even more deteriorated than my xray image above, (I must ask if I can have a copy of my xray), there's essentially a semi circle less jawbone there which has died off. Almost certainly due to the radiation beam. The lack of anchor bone and the rate of its decay would mean implants would have nothing to bind to. I dunno if this is something that will continue and cause more harm, I guess the dentist will let me know when its a concern during a checkup.

But the falsies are not so bad, its just a case of getting used to them. I got a standard set of low cost ones first to get my head around wearing them, They are not especially unpleasant, but the ads about biting apples with false teeth using fixadent are really over selling :D I can however eat and talk and sing (without whistles) with them so am happier than I was with the original surgical site prosthesis. I didn't bother to extend the false set to my surgical site as there's no gum tissue to sit them on and it would just be uncomfortable.

I'll get a lighter pair later on in the year, when we establish if I can keep the wobbly canine, as well, but I'm not confident.

Nothing else to report, usual tenderness, moderate pain on yawning, and recently a friend got me in a playful choke hold which set of a wonderfully unpleasent 5 minutr spasm in my throat....take note any friends....don't do that to me please..

so I lost the tooth

When I was  on holiday in Kenya my bloody tooth came out. As noted before, both my bottom incisors were compromised because of bone necrosis of the jaw caused by my radiotherapy 7 years ago, the bone has been dying away all that time and exposing the teeth, the 1st one lost its foundations about 6 months ago and has been wobbly ever since. It has been a bit of a pain, the Dentist wants me to go to the hospital, but I was
a) busy
b) not happy about going back to the hospital.

So anyway, after a lot of discomfort and wobbling, biting into some toast one morning I bit down on the tooth and it was very painful, and sure enough a few hours later I realized it was still niggling and tugged it, and out it came. No pain, and actually quite a relief, but of course I now have a gap in my teeth.

Its not obvious really, my droopy lip, also cancer treatment relate,  hides it when I smile, but the gap is there to see when I talk.

But I have to say its better out, I can eat again, biting into food, and no fear of biting down on a sore tooth. Now the other tooth will come out in due course, then I will have to go the hospital and see if anything can be done (I know that they can't, there's no bone for an implant) but we'll see how the other tooth manages on its own for now, when, not if, it gets loose I'll talk to the dentist.

new stuff

Wow its been a while, how are you all, well I trust?

Me too I'm happy to say, but a small post script has come down the line 7 years after my surgery, it appears that I am going to lose a tooth or 2, as a resut of a type of necrosis due to poor blood supply to parts of my jaw. Caused by the surgery or radiation treatment.

Bit of a bummer really, the dentist tells me that much of the bone on my lower insisors has wasted away and there is nothing left to support the teeth, one is very loose the other will be soon.
I have to go to the jaw surgeon and see if there's any case for implanting some bone from elsewhere (probably not as the blood flow isn't good) and the more likely case is to remove the 2 teeth and have another prosthetic made.

I never really liked the old prosthetic as it was resting on bone with no gum to support it, making it quite unfomfortable after a short while, and I had to remove it when I ate. I stopped wearing it after a few months.

Oh well.....can't say I am happy about it but once again we have to consider the fact that had I not had the surgery I would be dead by now so its really a small, but annoying price to pay. It's not as if losing teeth is such a big deal these days, I guess we can come up with a decent pair of falsies to let me eat apples again :(

I'll update when I have seen the surgeon.

ermm hi

sorry....ummm nothing to report...still cracking on with life, it'll soon be the 6th year anniversary of my diagnosis...but I won't be doing much to "celebrate"
Still got a bit of pain in my neck, still got the scar, still not got my beard..but life goes on...as it should


;)

oh here's something

I have noticed something.....I was given a prosthesis to wear a few years ago, but I stopped using it as it was basically useless when I wanted to eat... I just decided to do without.

But recently I have noticed the teeth on my upper jaw were moving down...without something to bite on they are slipping down. I dug out my prosthesis and tired it on an sure enough the bite pattern is quite different.

I'm not sure it will actually cause any issue, in fact I'm planning to get at least my back wisdom tooth removed soon since its very hard to clean due to the surgery and seems to be decaying. But it might be something to consider if you are having a prosthesis fitted...its mainly to stop your upper teeth above any jaw surgery from descending. My own prosthesis is unlikely to reverse this damage but I can still wear it, but the issue of not being able to eat with it remains...so I'll let nature take its course.


that's it...nots really much of a news bulletin but I'm in pretty good heath, with no cancer related tales to tell, so I'll fade back into the mist and report anything that might come up in the future.

Not a lot to report still

Hi,
its been a long time, sorry to have neglected you for so long, but there's really very little to tell.

I've had a few visits to the doc for checkups but am stopping them now, I don't see the need any more and my 5 years is pretty much up, so I am going to consider myself clear.

Had a few minor issues with pain in my jaw, which was largely resolved by the fitting and occasional wearing of a dental split to fix my jaw in 1 place when I sleep. That's not nice or especially sexy to wear at night but it does seem to work well, so I use it from time to time.

Longer term things...hmm letsee...well I still have discomfort to the touch on my neck below the back of my jaw and just above the incision site, its never been fully explained but so long as I don't rub too hard its bearable.
I never fully recovered the sense of touch in my cheek/jaw, I can detect touch but its a bit odd and a little intense, and often manifests itself as a tingle in my ear...still freaks me out when shaving.

Nor did I fully recover the movement control of my bottom lip on the right side, so speech and smiles are notably droopy when I talk, but I don't spit at people as much now, and only drool when singing ;)

My beard never grew back on the side the radiotherapy zapped, so that's unlikely to change, I can never grow a full beard again...half...but never full, so its shave every day or so now.

I do from time to time, have problems with my right shoulder and brachial neuralgia, this can be quite intense but there's not a lot that can be done. Doc gave me some stupidly expensive pills to try to ease it but they did little/nothing and over the course of a few months it faded away. I only really just noticed this week that I wasn't in pain any more from this latest bout.

Also from time to time, and usually at the onset of a cold of flu, I get what can best be described as spasms in my throat, when it constricts incredibly tight and painfully, for short periods, its random and not at all pleasant but wasn't something I ever had before the surgery. I must say this is the most unpleasant of the legacies I have, but its not common thankfully.

And that's about it, in April it will be 5 years since the diagnosis, its been a pretty reasonable 5 years since, (not counting the actual 6 months or so of treatment) I have some scars and a noticable chunk of neck tissue missing, a crooked mouth when talking or smiling but otherwise I continue on...

I'll get back to neglecting you for now.

countdown to more work

Check up done, nothing nasty found, but unlucky I still have to have my wisdom tooth removed since it is the cause of my recent discomfort which is apparently muscular. the muscle attaching my jaw is stretching in odd ways sometimes around the tooth and creating pain....

He was going to take it out today, but I have a gig on Saturday where I will be singing some numbers so can't afford to have sore mouth....(phew that was a useful excuse to have in the bag)

It does however have to come out on the 27th June :(
Aside from that all is fine, I also have to see the prosthetics dentist to have something to build up my jaw line again. Not sure what at the moment but I'll go with it. The current prosthetic is slightly uncomfortable to use and totally useless for eating so I don't bother with it now.

So nothing to report for now..will update you in June.

Time for a checkup

I missed my last 6 monthly checkup, I was overworked and ill at the time so didn't need the hassle.

But on what is now the 4 anniversary (yesterday) of my surgery I have to make an appointment to get a check up and one of my last free sessions with the torture queen they call a hygienist.

I have been getting a little discomfort of late around my surgical site so its probably best to have it checked, though I must stress to family and friends reading this, I often get discomfort around the area, mainly from grazing the tissue with hard food, or simply and more often too many yawns which can stretch the tendons at the back and cause some minor swelling. Depending on my mood I can get a bit freaked out..but am not in a down mood so am treating this as a simple irritation.

I have no lumps or bumps, it just feels a little sore, so I will get it checked. I did the on line appointment thing today so I will probably get an appointment in the next week or 2 after the spring holidays here have passed.

There's no other cancer news to relate, happy to say and I will report on findings after the appointment then hopefully fade this blog back into the obscurity it deserves. for at least another 6 months.

Anyone there?

Its been a long time since I updated this hasn't it...which is of course the idea...but I guess anniversaries are important...and I missed it again :D

So 4 years on...I need to book a checkup, I've been a bit lazy about that after missing my last one...no one chased it up and I couldn't really be bothered to hassle but I suppose prudence means I need to sort it.

So how am I?

Still not quite mastered the ancient art of yawning..though  I edge nanometres closer every time..and its stull hurts like hell.

I still have numbness in my neck which sometimes drives me a little mad, its also still tender at 1 or 2 spots under the numbness and I'm always aware of it, pain on scale of 1 -10 about a 1..so not really a problem...I probably need to get a massage again to drain whatever fluids are accumulated there...

My lip never fully recovered, but my speech was not badly affected and I learned to compensate but I do occasionaly fluff the odd song lyric. If my face is cold though it is totally useless and I do lisp then. I do occasionally still bite my lip if I am eating a burger or something but overall its good.
My tongue regained most of its movement and feeling over time, there's still a teeny bit of numbness but no danger of biting it and not noticing.

My radiation burnt beard never grew back, and I need to shave whats left every day or so to avoid strange looks of my half bearded face.

And that's about it...I seem to be in average health for an old fart of 50..a few aches and pains non cancer related.

The Anniversary of the surgery is coming up...I might book a dental appointment for a clean and polish just to remind myself of the pain :D

checkup fine, normal dental services to be resumed

The delayed checkup went fine, nothing to worry about, though we have decided to remove my redundant upper wisdom tooth next time I am in as it tends to make the jaw a little painful when the tendon rubs against it..its also a bugger to get clean as its a bit bent out of shape back there.. He offered to do it there and then, gulp...but I chickened out, a sore mouth was not my plan for this weekend, so I would rather wait till the next visit and psych myself up for it.

An Xray was taken just to see how everything is, all good, no sign of descending teeth, I guess the prothesis which I use from time to time, is keeping all the teeth in place.

Also as its now 3 years, give or take a week, we can reduce the visits to every 5 months now :) And I need to start going back to my normal dentist for routine torture, I mean cleaning and such.

In other news.

I was contacted recently by a campaigner in the US called Cameron von St. James who with his wife actively promotes awareness of mesothelioma, who wanted to post on my blog.. I thought carefully about that, but decided I wanted to maintain this blog as a simple personal experience of what I have been through to act as information to others.

I think it might muddy the waters if other topics were to be posted here, but in the land of the interwebs we should all try to help out and raise awareness so I agreed to post a link to his and his wife's blogs.
You can find them here.

http://www.mesothelioma.com/blog/authors/cameron/
http://www.mesothelioma.com/blog/authors/heather/

Damn I missed it.

Thats good isn't it?
I actually let April 6th pass by without a thought. 3 years since my diagnosis. Life moves on as it always does.
I still have check ups, though I accidentally missed my March one and re-scheduled for April 19th.
I still miss being able to yawn.
I still have nagging pain that comes and goes depending on when I last tried to yawn.
I still am terrified of sore throats and colds.

I'm still here.


 Overall....its good that I missed April the 6th..it wasn't really a very special day.

Nothing new

Had checkup on Friday, its now becoming so pointless Drs van Gemert barely remembers me...which is good.

Nothing at all to report, though the clinic has a new oral hygenist so time for more torture...next update in 5 months.....

Nothing to see here

Jan, (thats Dhrs Van Gemert to you) is not worried about the spot, I have  touch of gingivitus and its just a bit irritated...I can't use really strong mouthwashes, they burn like you would not believe, but I'll try a different brand and see if it helps...oh and I have to visit the trainee royal torturer...I mean Dental Hygenist...gahhh

If it gets bigger or hangs around when the gingivitus is under control then I can go back in, but he's not worried and did my normal check up while I was there, so next update might not be till December



hope so!!

oh dear

I've got a lump..

its tiny, and frankly can only feel it with my tongue. but its there...similar kind of "might be a spot", thing that I had when this all started.

Trouble is its not on the site of the orginal, its on the upper gum above the original.

As always with these things it probably is nothing more than a stubborn gum boil refusing to heal, but its about 3 weeks now...since I noticed it.

I've booked an appointment on Friday to get it checked... If it is nasty its going to be quick and easy to get rid of at an early stage..I'm not making the mistake of putting it off like I did before.

Under the circumstances, a little bit of over protective paranoia won't do me any harm.

I'll update as I know more.

Teething problems

There's not been a lot of things to post on here the last few months. But I know a few people are visiting so its only fair I make a effort to say a few things even if they seem very trivial to me they may mean something to others going though the recovery stage of oral cancer and jaw removal. Well...still no sign of a full jaw crackin yawn, I think I'm going to have to just deal with the fact thats not going to ever happpen again. The tendons in my right side were re-attached to my reduced jaw a little lower and therefore just can't stretch that far. When I get close to it, the full cracking point, I end up hurting the tendons resulting in some pain and swelling for a few days. As always I feel a bit like I have cotton wool in my mouth which is a little tender. My neck often feels a bit stiff and tight on the skin level, and I do have permenant sore spots there. I'm starting to talk a bit more like Slystallone too, out of the side of my mouth. Feeling has pretty much returned with a slight numbness on my right lower lip, but no control, the bottom right lip simple does not work so I can do a great "Don't push me " impression with realisitc lip paralysis. Its not a big problem though. I was given a prosthetic replacement for my gum/teeth area, but I didn't find it especially beneficial, it hurts when I chew on it (there's no gum on the bone) and it needs to be cleaned after eating (or removed before you start). So I've not really bothered with it a lot. Today though I decided to put it in for the 1st time in a couple of months and noticed immediatly that one of my top teeth as biting down on it. A sure sign that that took has started to grow down with no opposing tooth to prevent it. This really is the main cause of todays post, its a minor thing but something to be noted.. with no teeth under them the top teeth with slowly move down and eventually drop out...even though I don't chew that side any more I don't really want to lose the teeth so I'm going to make more effort to wear the prosthetic to prevent futher "droppage"