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I'm back (not that I was overly regular and probably wasn't missed ha ha)


Captain Howdy
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Back on May 1st I was rushed into hospital due to having a funny turn with my brain. I was forgetting things all the time, imagining other things and had a seizure among other things.

After two months and three hospitals and an initial diagnosis of TB/Meningytis it was finally confirmed as cancer. Its a blood cancer affecting the brain (putting pressure on the brain causing issues with balance, memory and temporary gave me a new personality that took over so I dont actually remember anything that happened in the first two months). Come July I regained my personality and was able to shut the other guy down who was paranoid thinking everyone was trying to kill him and made him aggressive pulling needles out refusing medication and such like and even tried to escape resulting in sedation. All this I only know through what I have been told by friends, family and nurses.

I spent about a week co habiting with him so saw some of what he was going through (by this time he thought he was dead and going to hell) before I finally got rid of him but was still suffering with other neuro issues.

I came out in last day of July and have been having various types of chemo and other treatments since then which seem to be working as most neuro issues have subsided. I lost my bike licence due to the seizure I had in March so have just under two years as long as I have no more, til I can re-apply for my licence.

At first when I was set free, I was still having memory issues, balance issues and shaking hands etc, but now I am mostly issue free with just slight memory issues.

I tried to log on here after I came out but could not log into the message board and could not even get a recovery email sent but I was struggling to read as my eyesight was also effected as it was very fuzzy and could barely read, but now all of that stuff is gone I have finally worked out what the issue was. I registered here so long ago that I was using an email that no longer even exists.

So I have been given a 6 to 12 months potential recovery time with chemo and other treatments such as potential stem cell transplant etc, but could obviously go on longer if necessary. Unable to work due to being a danger to myself and others with the neuro issues, but with those subsiding hopefully once the cancer is in remission I will be fine to work again (cant risk it now due to low immune system from chemo which leaves me open to colds, flu, covid etc which could really set me back if I get them). Also can't use public transport or go to gigs etc right now.

So anyway back on here again to be an irregular again.

I also have a youtube channel where I explain a lot of things I am going through, to try and help people understand and to give hope to others. And thankfully I have a just giving page too as donations from friends and work colleagues etc has kept my head above water with benefits take forever and are not high enough to live on.

Edited by Captain Howdy
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You were on the list Im preparing of people who vanished, be on the lookout, glad your back.

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  • My Little Pony

Nope. I noticed you were gone. Just the other day one @Captain Hollycommented on a thread, and I thought maybe you had transitioned. 

But, wholly shit, dude. I can't imagine what you've been through, and currently still going through. I hope your recovery is as quick as possible. 

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It's all going well, the linfected lymph nodes near the brain and spine must have been reduced in size significantly as my brain is working so much better than it was say two months or so ago. Initial treatment I had was a twice a week treatment where they injected the chemo direct into the base of the spine (not as painful for me as it is for some) and that pretty much cleared up most of the cancer that would have been in the spine, but now on two different chemo treatments we alternate, and go in for a week every 3 weeks to get them intravenously in the arm.

I actually feel a lot healthier than you would think, but its just really about making sure I don't get other infections or bugs.

I did have to be rushed into A&E a few weeks ago with what turned out to be a gastric problem, possibly caused by the gall stone I didnt know I had but during x-rays they discovered a totally separate lung infection which they dealt with quickly before it spread.

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Heres my vids so far and my just giving link, but obviously nobody is obligated to donate, just the more I share it the more options I have.

 

https://www.justgiving.com/crowdfunding/colin-brown-976

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Holy shit mate, sounds horrid. Glad you're somewhere on the other side of it and all the best going forward. 

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Sorry to hear about what you had to go through Captain, especially during the time when they were unable to determine the cause.  Best of luck with the ongoing treatment.  I hope it continues to make you feel better.

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Thanks to everyone for the well wishes. As some have said I am certainly now closer to being fully recovered than I have ever been, and this year as a whole was probably affected by this cancer way before it was discovered as I had been off sick so much more than I have been ever in my life. Started the year on new years day with a week off with Covid, then followed the next week by a bad stomach bug. Feb I was off a week after a reaction to the first vaxx, then a week off in March due to the seizure. I think a lot of that affected me so badly as the cancer was already there.

In the last month or so I have certainly felt much healthier, although I do like sleeping more during the day but thats all part of the healing process and much needed.

Hopefully by Feb/March things will be back to relatively normal.

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Small update. A few months ago I had a biopsy on my chest with the lymph nodes, and came back as cancerous. Which is why the changed my chemo treatment.

A couple of weeks ago I had a PET CT Scan, and the results came back that I am now cancer free in my chest, so only the brain to now continue with. Really good sign.

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On 11/19/2021 at 5:30 PM, Captain Howdy said:

Small update. A few months ago I had a biopsy on my chest with the lymph nodes, and came back as cancerous. Which is why the changed my chemo treatment.

A couple of weeks ago I had a PET CT Scan, and the results came back that I am now cancer free in my chest, so only the brain to now continue with. Really good sign.

Good to hear. hope things continue to improve 🙏 

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And a small but important  update. Had an MRI scan two weeks back and just before I went in for a weeks chemo.

The day I was discharged the doctor who discharged me gave me the results of the MRI scan and confirmed my feelings that the brain cancer had reduced in size, so everything it seems is going to plan.

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  • 4 months later...

So been a bit quiet the last week as was finally admitted to hospital on Friday 1st April for my final treatment, the big one. Had my heavy dose chemo last weekend which essentially destroys my bone marrow, a few rest days and then had stem cell infusion on Thurs. Doing well for the most part right now but fully expect a bit of a down turn as it's pretty much par for the course, but all about moving backwards to move forwards. Will be in for around 3 more weeks depending on how it goes. Will try to pop back in here and there as hospital WiFi is free.

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First time I've seen this thread.
Sorry for all you've been through and are going through.
Hope you'll finally be on the mend.

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  • 3 weeks later...

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