I'm still knocking around ...

[Saracen999]

Hey all.

It's been an 'interesting' time recently. It's a combination of things and it's kept me away from the forums, and for quite long periods, not even booting the laptop up.

But to avoid doubt, I'm okay and its NOT been about health. Well, not directly.

It's probably about time I put this out there though. Some here know already, but many don't. A while back, I had a persistent pain in my little finger, and a little bump on my head that kept coming and going. Frankly, I didn't think much of it but the finger bleeping hurt, and didn't ease off. I thought I'd broken it and maybe needed a splint.

So, visit GP and get referred immediately, as in RIGHT NOW to the hospital. Hmm, thinks I.

Long story short, yeah it's cancer. The prognosis. 6-18 months.

Well, that happened the day my local hospital was clamping down for Covid treatment, wards being separated into 'clean' and Covid, and he whole masks, lockdown etc stuff started all over the planet. i.e. April 2020.

So, it should be pretty evident by now that the '6-18 months' bit was, erm, a bit inaccurate.

So, anyway, yes it's stage 4, no it's not curable, but yes, it's treatable. And it's now nearly 4.5 years later.

The upshot of it all is I take a chemotherapy tablet every day, three weeks out of four, it make me feel icky for an hour or two, and so far, that's about it. Oh, other than making me tired, and meaning my recovery time from exertion is longer.

I'm still waiting for the latest scan results but up to the prior one, the tumours shrank on starting the chemo 4.5 years ago, and haven't grown since. Last time I asked, the prognosis was 50% chance of 5-10 years, maybe longer.

The chemo is pretty new. When I started on it, it had been in use in ths country for around a year, or a bit less. Which appears to mean I'm kinda on the leading edge for long-term treatment with this, and my guess (and it has been hinted at but not stated outright) is that nobody really knows how long it will work for. It could be many years, or it could stop next week.

So the point of all that is that I get more tired, and take longer to recover. Things recently have been a bit hectic for non-medical reasons, and the tiredness thing means I hadn't turned the PC on much, and when I did it was a quick email check, and maybe doze off watching a youtube vid.

What I hadn't realised was how long it'd been since I posted here. Sorry about that, especially to those that did know much of the above and were getting worried.

I am around, and on a day-to-day basis, am fine, if a bit tired. And should be around more now.

Finally, for anyone wondering .... why not mention this earlier? It started not long after we lost PeterB to cancer, and the time didn't seem right. Then, Chris was taken ill and with a far, FAR more pernicious form than mine. None the less, Chris and I talked a lot in his final months. It definitely didn't seem like a good time for a "me too", especially given that the treatment was working pretty well. And it never really felt like the right time after that. Until now.

To be honest, I don't feel much different now to how I felt before all this started. A bit easier to get tired, and a bit slower to recover but, I'm getting older anyway. I don't know what the future holds so I'm taking things one day at a time, and not making too many assumptions about long term. At this point, given the last 50-months-ish, I'd say I feel it likely I'll still be here in another 5 years, and beyond that, who the hell knows.

Oh, and despite approaching nearly 5 years of daily chemo, I still even have most of my hair. Or at least, I have that that hadn't already succombed to male pattern baldness. I don't even get to save on hairdresser's bills! Grrr.

[Jonj1611]

Aww man, I was just going to post literally yesterday, has anyone seen Saracen.

Sorry to hear that man, seems to keep coming around and around. I have it had myself, other members too. One day they will find a cure, one day!

Glad to hear from you though, I think someone else said in another thread has anyone heard from you.

I have shaved hair and I can tell you now it probably costs me MORE now with the hairdressers than it did before. And that's because hair actually grows pretty quickly so when you head is shaved you notice it more after a couple of weeks or so and need to get it done again!

But anyway, you are still here and that's all that matters

[kalniel]

Thank you for posting, good to hear from you Saracen

[Saracen999]

I've no doubt cures are coming, some already being here, Jon. A lot, of course, depends on early detection, so I'd urge everyone, including the young, to take the risks seriously, and keep an eye on screening programs.

Even where cures aren't available, like for my case (it being too advanced), treatments can be much, MUCH better than even five or ten yeas ago. Note, I said "can be", not "are". But it's getting better all the time. Even chemo isn't neessarily anything like as unpleasant as many think, certainly not in all cases, though it is in some.

The worst thing anyone with any suspicions can do is impersonate an ostrich and stick their head in the sand. Getting checked ASAP could be the difference between a cure being available, and not.

Despite mine not being curable, SO FAR, treatment has been very effective and minimally unpleasant, considering the alternative.

[Jonj1611]

I think people don't like getting checked because they are worried about what the results might be which ironically can be a lot worse the longer things go on for.

I have a CT every couple of years now. I still get scanxiety!

[Saracen999]

I get a CT every 3 - 4 months. My main problem is not dozing off while they do it.

But yeah, I get the anxiety about getting checked, I really do. But for anyone with a worry, prompt action might literally save your life. In my case, a kidney problem wasn't caught until it was already in the lungs and bones. But catch it early enough and it would have been curable. Removable surgically, even. I was told, though, that the kidney tumour could have been there maybe 20 years by the time they caught it.

[Rob_B]

Aah feck man, sorry to hear this, but glad to hear it seems to be going as well as it can under the circumstances.

[Output]

Glad to hear from you and that you are OK (under the circumstances at least) Saracen, especially that the treatment is working even if it won't cure it.

Not saying anything about it before now is completely understandable (and of course always the decision of the person themselves anyway - I honestly don't know if I'd say or not if it were me in that position).

[jimbouk]

Ugh, glad you're doing 'fine' - whatever that means these days. My mum's just out the other end of chemo tablets and the week gap just isn't enough to bounce back so completely understand the tiredness! She was on a trial for (another?) new tablet form which was meant to reduce side effects so maybe some more improvements heading your way.

[AGTDenton]

I follow everyone else in saying very good to hear from you!
Strangely mine also started April 2020

I did lose my hair during chemo, and 100% baldness did not suit me!
Had it not grown back I planned on getting a scalp tattoo that made it look, from a distance at least, that I wasn't bald. I'd seen a social media post about it so I thought great idea. I was extremely grateful it came back and have not had the tattoo yet.

The worst thing anyone with any suspicions can do is impersonate an ostrich and stick their head in the sand. Getting checked ASAP could be the difference between a cure being available, and not.

Totally agree and can't stress enough if anyone suspects anything go to the doctor. I personally would shelve the idea that only people over a certain age typically get it, that's an outdated view imo especially now that we're seeing so many more bowel cancer cases in people from the age groups of 20, 30, 40.

If anyone remembers TotalBiscuit he admits in a video to ignoring his symptoms for over a year and passing them off as something he ate, basically finding excuses to not have to go to the doctor and was clearly miffed he didn't act sooner.

[Saracen999]

It seems there's a lot going on, Jim. Probably the best hope is for a genetically engineered solution, but it'll be a whopping cost. That said, when I first went on this drug I managed to find the approximate cost and at that time, it was about £70/tablet. I was then on one per day. After about a year, they cut the dose to 21 days on, 7 days off, and repeat. Apprently, this stuff stays in te bloodstream for about 10 days, so that regime gives me a break, without ever quite going to stop/start, which might trigger a reaction.

Lowered energy levels is an issue, as is significantly reduced immune system. I really timed that, getting tge diagnosis right as Covid hit, didn't I?

But all things considered, taking the chemo hasn't changed my life much. It messed up my taste buds a bit too. There was a few months of not knowing what I could eat, and what tasted weird. Mostly, that's settled down now and those few things that still taste weird, I just avoid.

The chemo does also seem to mess a bit with my blood chemistry, including lowering potassium and magnesium. So I was "prescribed" bananas and strawberries (among other things). Well, damn. I'd live on bananaas and strawberries if I could. Instead, I'm just 'forced' to eat some every day. It's hard, y'know.

You should have seen my oncologists expression when I asked if I could get those put on my monthly prescription.

[Rob_B]

Move up here and your fruit would be free! Or alternatively hang around the supermarket dressed like a schoolchild and eat their free kids fruit...on second thoughts, maybe don't do that..

[jim]

Thanks for sharing Saracen, glad you're still popping by. It seems so ridiculous now that I thought something must have gone awry because you'd expressed an interest in an Echo speaker.

[Galant]

Saracen!

So good to hear from you, regardless of the news. Thanks for taking the time and energy!

I'll be praying for you.

What is it now, 20 odd years on here.....?!

[Saracen999]

Thanks for sharing Saracen, glad you're still popping by. It seems so ridiculous now that I thought something must have gone awry because you'd expressed an interest in an Echo speaker.

Got a couple as a stereo pair. For the price (at that time) they're not bad. There's the whole snooping thing, but ....

So I upgraded to a couple of Sonos ERA 100s. These are a MUCH better speaker, though at a much higher price. And I did it right before Sonos, the morons, utterly borked their app, without which the speakers are not far off useless to me. Oh joy.

[Saracen999]

Saracen!

So good to hear from you, regardless of the news. Thanks for taking the time and energy!

I'll be praying for you.

What is it now, 20 odd years on here.....?!

Thanks. And yeah, it must be off that order. And OCUK before that, when David was a mod there, too. Doesn't time fly?