Home again!
 

Eventually managed to come home this morning, after the last bag of Chemo finally decided to finish at 03:15! Talk about tedious - waking up at what seemed like every 10 minutes, only to see NO change in the levels.. Aaaargh!

Anyway, home now, and the dogs went absolutely crazy when they saw me, which was nice. Funnily enough, the Spaniel is the one we thought would be the least bothered about, well, anything really, but not so; he's been quite clingy with H, pestering her for attention almost all the time - not like him at all! Not quite enough to put him off his food though!! ;)

So, a wee rest now, then in for CT Simulation No. 2 next Thursday followed by commencement of the Radiotherapy on August 5th. I have to stay in overnight a couple of times over the course of the ensuing 6 weeks for additional Chemo, but I'm sure I'll manage!! This past 6 days have been sooo tedious - I guess first admission wasn't so bad, because everything was new and different, whereas this time........ well, watching paint dry would have been more fun!!

Righto, time for my nap........ see y'all later!

You need sudoku books or some such?

No sir, but thanks for the thought! Never managed to get into Sudoku, and my concentration of late has been pretty piss-poor TBH - it's been all I can do to even spend half an hour online!

Thursday past, I had the CT Simulation of what will be my 34 (I miscounted! :( ) radiotherapies, which first of all involved re-shaping "The Mask". That alone took nearly 40 minutes, and by the time they'd run the 2 sims required - well, let's just say I wasn't the happiest chappie in the world! Me and wee spaces/close-fitting masks just don't mix! Thankfully, the actual treatments will last 10 minutes each, tops.

Overnight Chemo #1 is next Friday/Saturday (what a bummer!) then into the every weekday routine. I, along with H and my daughter, am going to see a Brit comedian called Bill Bailey on the 21st, which I fear will be my last public outing until about mid October, maybe later, due to the burning of the skin and oesophagus which will be caused by the radiotherapy. Hopefully I'll at least manage a few laughs before that..... :huh:

Nothing much more to say at the moment, except thanks to all those who have sent, and continue to send, their love and best wishes. You all know who you are, and I thank you from the bottom of my heart.

DM

Don't forget to ask the Dr about Carafate and get some emu oil for the burns. ((hugs)) Did you hear the lead singer of the Beastie Boys has some type of throat cancer too.

Forgot about the Emu oil - I'll check that out today. Thanks Lil. :molest:

Blech. Well, hope you continue to hold up.

Quick update. In overnight Friday/Saturday for more Chemo - unfortunately it's not regime where I can have it in a pump a la dicksbro - because it canaffect your kidneys, I have to stay in and have my obs done, urine output monitored and a total of 3 1/2 litres of fluids over and above the actual meds.

To say I feel awash at the moment is rather understating things!!

Still here, though, and still fighting! Onwards to another week of radiotherapy, and a neck that is getting red from same even after only 3 treatments!!

:banghead:

((hugs)) wish I could make it better.

Oh, DM such news. Sending you love and hugs.

Thankyou, sweetheart.

Not much happening at the moment. I've now had 11 radiotherapy treatment fractions out of 33, so things are moving on. Not much redness to my neck yet, although there is an interesting pinkiness appearing! Unfortunately, what I had thought to be a tickly cough over the weekend is actually the start of the skinburn to the inside of my throat - not nice at all!
I've now got medication to deal with it, and a nice numbing liquid medicine to enable easier eating. The main issue is tiredness - I seem to be spending longer and longer periods of time sleeping during the day - which is set to increase as time goes on. Still, if that's the worst that happens, I won't be complaining!!

DM

Hey, they'll make a redneck out of you yet.

Oh they will indeed - literally!! :rolleyes2

DM

Prayers continue for sure, DM! Your about a third done with your treatments and I just finished 5 or twelve. We're moving along and, Lord willing, we're going to be Pixies for a very long time to come! I've found I'm a bit more tired than I used to be. I've always liked an hour nap in the afternoon, but I get in a few more now ... expecially the Sunday and Monday following chemo.

See, now I can blame something besides getting older. ;) That's one of the perks. :)

Had an interesting wee chat with the clinic nurse this morning. It seems that the therapy regime I'm on [aggressive chemo followed by IMRT radiotherapy] is offered only TWICE every month, due to the relative newness of the IMRT and the complexities and time to plan and set up (about 6 weeks!!!)

Now, I knew this was a hard-core treatment option from the start, and I've been lucky enough to "dodge" the majority of the really unpleasant side-effects, but I didn't realise just how uncommon this particular treatment plan actually is. Added to which, 'my' hospital is the only one in Scotland to even offer it as an option; so, I have been blessedly lucky threefold now - diagnosed in time, offered a rare treatment (which seems to be working well, so far) AND few side-effects.

And some people have been dissing the NHS recently - all I can say is, fuck them ALL!! The NHS rocks!! :D

DM

In for my (hopefully) last overnight Chemo on Monday night, finally managed to get home by 2p.m. yesterday! It's weird, though, that I felt fine up until I took the anti-sickness pills they gave me, late last night, and promptly threw up all over the kitchen!! Yuk. (Apologies to those of a fragile disposition!!)

Still, it feels good knowing there are no more in-patient shenanigans to endure!

DM

((((((dm))))))

Thinking of you and sending prayers and healing thoughts your way.

Never give up!!! Remember it's always darkest just before dawn.

Thanks Teddy.

It's just that of all the things that can happen to a person when they're sick, actually being sick (i.e. vomiting) is the single most objectionable thing I've ever experienced. I've always tried (though not always successfully!) to avoid it wherever possible!!

Absolutely agree with you 100%, that is the worst!!

Hang in there. *huge hugs* and wishes for better days sent to you!!!!! <3 <3

What peeves me is that there is a drug that is almost 100% effective at preventing people from puking but it is very $$$$$$ so doctors do not order it.

I thought there was something they could give but wasn't positive. Thanks Lil for confirming. So now the question is.... How can anybody get this stuff? (In particular our DM.)

Irony. No, we don't get that here. I used to be the only practitioner, but I had to stop. People were giving me strange looks.

Not to mention a certain herbal med that's been an effective anti-nausea treatment for centuries, but just happens to be *illegal*

Makes people giggle a lot, too...& isn't laughter the best medicine of all?

That herbal med is good for alot of things, MS I know is one. Depression, anxiety attacks, glucoma (no idea how to spell it, the eye thing, lose sight) all real issues, and I'm sure there are more, that could possibly be helped if it were legal for medical use.

glaucoma (only because I've got Firefox with spellcheck :) )

That's only one of the many things I don't get about the world today - when a drug's benefits far outweigh its dangers, & costs of enforcement of laws against it far outweigh de-criminalization, why, oh why, do we continue with the status quo? If one of the Big Pharma companies could patent it, we'd have legal weed tomorrow.

...

Well, as of today, I now have nine more treatments to go. (I meant to post this yesterday, but there you go!!!)

I spoke to various perfeshnull people yesterday about my vomiting etc., and have been prescribed yet another anti-sickness pill, and a stronger-acting laxative to "assist your bowels Mr. H..". Lovely. Still, it did mean keeping down everything I ate yesterday, which has to be good thing, right?

Unfortunately, I also received another in-patient appointment for the Chemo I thought was finished (and, indeed, was told on leaving the ward last Tuesday) so need to get that sorted when my Consultant comes back off his holidays. I so don't want another Chemo admission - that's what made me feel this way in the first place, and as it's a cumulative thing I can only imagine how I'd feel after another one! Still, if he says I must, I guess I must!

DM

"My doctor's drugs can beat up your doctor's drugs!"

All,
No intention to demean this fine discussion , this is an old sailors saying ,
The only sure fire cure for sea sickness is to stand under a tree

Best Wishes to DM383

So, I'm now down to only 5 R/T sessions, or ONE WEEK to go! The sickness is pretty much gone now, to my relief, but I've been told that "it would greatly benefit the efficacy of the radiotherapy" if I go in for the other dose of Chemo they scheduled me for next week - so that's that, I guess.

Back on the plus side, I managed not to lose any more weight this week, after losing 4 kilo's (9 pounds, roughly) last week. My skin is still in fairly good nick and my throat is no worse than it has been for the past 3 weeks or so now - all-in-all, I seem to have suffered only minimal side-effects from all the treatment, just need to hope it's all worked now!!

DM

Yeah, what you said.

Glad it's going well! ((((DM))))

My Treatment's Finished!!!
 

...... and the only really intrusive side-effect is several rather severe mouth ulcers.

The ulcers are a major pain, in more ways than one. I couldn't use OTC preparations because, bizarrely, they all contain alcohol in one form or another, which the X-rays of the therapy simply boils - nippy.
They did give me a protective paste called Orobase, but that is soluble and "washes off" in no time - pretty useless really. I've been using Sodium Bicarbonate mouthwashes, which I'll increase now, and also a liquid called Oxetecaine which is a mild local anaesthetic. Oh, and effervescent Co-Codamol for pain.

None of it really does much (apart from the Co-codamol) but now the R/T is finished, hopefully things will start to clear up in a week or so.

By the way, did I mention my treatment's FINISHED?!?!??! :D :D Yee-Haaaaaaaah!! Out-patient appointment in a month and 6 months (6-month one will include a scan) then if all's well it's back to my local hospital for 5 years follow-up. Whew - seems a lot from here!!!

dm383,

Congratulations! I am sure you are now in remission, and at the 5 year exam, you will be moved to the "cured" column! :thumb:

WhooHoo!

Well done DM. :D

Yes!!!!! What he said ^ ^ ^ ^ and add a few !!!!!

WHOOHOO!!!!!!!!

So glad to hear DM! Continued prayers and well wishes sent your way.
And of course a bigggg teddy bear hug... ((((((((DM))))))))

It's been a while, but an update beckons.

I was in for my first out-patient appointment two and a bit weeks ago and the (not my Consultant) doctor wanted me to come in for another scan, despite my Consultant telling me I wouldn't get one for 6 months due to the tissue damage the radiotherapy had caused.

Now, I was unperturbed by this at first - somewhat junior doc, I thought, covering his ass. OK. However - I looked at the appointment letter properly today, and it's for an ultrasound-guided fine-needle aspiration ~ in other words, exactly the same test that confirmed my original diagnosis. I can only presume it's to be on the slightly ambiguous-feeling 'muscle' I felt in my neck on Christmas Day.......

I can't help but feel slightly concerned about this (shitting myself might be nearer the mark!) so I'd be obliged for your continued good thoughts, people!

Thank you.

You absolutely have been, are, and will be in our prayers. The kids my wife watches also continue their prayers for you. We'll hope that it's as you suggested; a younger doctor that's just being extra cautious.

On the upside, ultrasound doens't pump a bunch of radiation into your body, so yeah, maybe it really is a CYA thing.