Topic: Update from Ron Smith

This has been a particulary bad couple of nights.  Not because of pain, not even much in the way of discomfort.  I just cannot get to sleep.  It is currently 4:35 am and I have just finished a long e-mail to a former business colleague, but I am still not tired.

As many of you will know, I suffer from ailments, other than CC, and they keep being added to.  The problem, as far as the docs is concerned is that  to treat one will probably have an affect on another.  So I have fluid in the lung and the only relief comes from draining that lung regularly.  They stick largish needles into my back. under local, in order to insert the draining tubes.  This is fine and does not hurt, but eventually I have to take pain-killers. (keep that in mind for a minute).  My lower extremities are very bad with fluid and the diurectics are not really working.  The pain-killers cause constipation that just adds to the discomfort at my waist, making the fluid seem worse.  Appetite is poor and so I have steroids to improve that.  But they cause water retention!!  Latest thing is very bad Thrush in my mouth.  This makes the mouth so very dry, but I cannot find anything to alleviate the thirst.  I was never a drinker but seeing someone on the telly downing a long. cold, beer to quash a thirst is really hard to take, when I know that it will taste of salty water to me.

So, here I am, composing this at 4:55 am, still not tired, hungry or thirsty.

What meassage am I trying to get over?  Well, remember, very few of us has only one symptom, and each may affect the other.  Our carers may have several problems, but, by and large, they will successfully hide them.  No matter how bad you may be feeling just now, things can improve, so look forward to the better days.  Finally, if you are able to reply to this, or send your own thoughts, you are still here fighting.  The alternative is not so appealing.


Best wishes to all.

Ron

Re: Update from Ron Smith

Ron Smith wrote:

"... No matter how bad you may be feeling just now, things can improve, so look forward to the better days."

Lots of hugs to you, Ron.  Thank you for that message.  Emotionally, I've been on a downward spiral for the past few days - I feel bad about that because I'm not the one with CC!!  Today I woke feeling "that's enough!!  onwards & upwards from now on".  Then I came on & read your message & you're right ... I'll start the "better days" right now.

I hope you get some good sleep soon & that you feel much better, too.

Jx

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Update from Ron Smith

Your message came at just the right time for me.  I  am having a real downer this week and I dont even feel sick.  My poor partner is getting the brunt of it all.  I will have to be kinder to him.

peace, love and good vibes  Wendy

Re: Update from Ron Smith

Dear Ron,

I have just logged on after what I termed as a bad nights' sleep. But in comparison to yours I slept like a baby....

The middle of the night is always worst for bleak thoughts, I work nights regularly and that is when my mind starts wandering to the what ifs and if onlys. I am concerned that you still have oral thrush, has your doctor prescribed Nystatin mouth drops for you? It's hard enough to fancy anything to eat and drink when you feel ill but to have a dry, sore mouth must be horrendous. Miconazole gel may also be useful... Just a thought.

Thinking of you lots and hoping for a more restful weekend for you.

Katie

5 (edited by Darla Sat, 10 Oct 2009 06:25:20)

Re: Update from Ron Smith

Dear Ron,

I agree with the others and thank you for the encouraging post.  I am sure that most of us, all having been touched by this horrible disease in one way or another, patients, caregivers and those of us who have lost a loved one have many sleeplisness nights and your post "No matter how bad you may be feeling just now, things can improve, so look forward to the better days." is just the boost I too needed when I came on here this morning.

Here's hoping for better days for you and everyone of us.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Update from Ron Smith

Hello Ron, what would we do without a computer to help get us through the night? I have sat here many a night/morning because of CSS (can't sleep syndrome) worrying about Teddy. About the dry mouth I will make a feeble attempt here. How about lemonade? I think it is so great that one can come on here and "let it out" because when you "type" it all out it really is cathartic and you become ready for a new dawn, a new day. Everyone on this site is already a survivor. Hoping for some better days for you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update from Ron Smith

Ron,
You are so right.

Have they given you anything for the thrush? It is a very unpleasant side effect for sure.  Have you tried rinsing your mouth with apple cider vinegar and eating yogart? They helped me.

Now Ron, dont let yourself become dehydrated or I shall get very cross with you!

Keep up your spirits and enjoy that crisp autumn Scottish air. Is the heather in bloom yet?

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Update from Ron Smith

God bless you, Ron.    I want to join in with the rest of you non-sleepers.  Last night was not so good.  I woke up hearing my dad call for me to help him.  Crud!  No one to talk to.  So I made some coffee, convinced my Beagle that even though snow fell last night he still had to go out, tried to think of a solution to Kris' hair dilemma and settled down to watch tv.  (Did you know there is an oven that actually bakes a frozen turkey in record short time??)  Perhaps we could start some type of late night chat line...

Would popsicles help with the thirst?  My dad ate boxes of them a week.  They come in so many flavors, now.  And sugar-free, too, which my dad needed.  He also loved watermelon, which he also devoured in massive amounts each week. 

Hang in there, Ron.  And thank you for sharing your message.  I am grateful to this site to have met such strong, wise people - worldwide - I am honored to call my 'cyber' friends.  We may have come together here searching for answers and support in a desparate situation, but we have found so very much more.  I think of everyone, EVERYONE daily;  we have cried together, laughed together, prayed together, gotten angry together.  We have celebrated birthdays, grieved end of life, honored many cultural holidays, and laughed at an array of jokes.  I just can't imagine surviving this period of my life without any of you, and can only hope I have been a little helpful to you all, as well.

Hang in there, Ron. 

Hugs,
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Update from Ron Smith

Hi Ron,

I do hope you've managed to get some sleep by now.

I agree with Kris on the yoghurt option for the thrush, plus some local nystatin, amphotericin or miconazole.

I used to keep plain live yoghurt in the fridge & eat it really cold & just hold it in my mouth for a while.

It's better if you can stomach one without sugar  because that may compound the problem but if your appetite is not good have whichever you fancy. It's cool & soothing to your mouth which is nice even if only temporary & will help generally with the thrush. Added crushed soft fruit like raspberries can be nice as a pleasant 'sharp' taste.

There are dietary measures that will deal with thrush, but can be a bit restrictive diet wise & does need persistance so I won't expound the theories right now, particularly if you're struggling with food.
I'd be happy to share if you'd like - I'm still a newby with the cc but an old & experienced hand with thrush/candida due to previous!

You may already know all this  so apologies if I'm teaching granny to suck eggs! Or yoghurt......

When you have oral thrush it's possible that it's all through your gut & really makes you feel grot, even when you don't have the cc & other health issues to deal with. Nausea, heartburn after food, bloating etc etc. which can all be attributed to cc as well - boy, do we all know how to have fun!

Here's hoping for a good night's sleep & better days onwards

Take care, Val

10 (edited by Ron Smith Sat, 10 Oct 2009 09:15:09)

Re: Update from Ron Smith

Thanks for all your kind thoughts.  To be fair, the GP surgery is very attentive to my needs and I have been prescribed Diflucan Suspension (Fluconazole).  I take 5ml per day and it seems to be having an effect (Touch wood, any wood will do!).

Kris there is no way I am going to intentionally do ANYTHING to make you cross.  I am just happy to wind you up a bit.

Had a short sleep this afternoon and will try to stay awake now until night time.

Keep positive everyone.

Ron

Re: Update from Ron Smith

Hi Ron,

Fluconazole will do the trick too - marvellous!

Hope you're still asleep as I write.....zzzzzzz

Val

Re: Update from Ron Smith

Valjee

At risk of denting all the wood,  the Fluconazole does seem to be working, and pretty quickly.  One benefit is that the suspension actually tastes nice.

4:00 am - I was awake but had enjoyed a much better sleep beforehand and I can now eat and DRINK!  Hooray!

Went back to bed and slept some more.  Body clock must be changing.

All the best.

Ron

Re: Update from Ron Smith

Sleeping, eating & drinking???  Fan-tas-tic news!!!

I hope you feel betterer & betterer ... Jx

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Update from Ron Smith

Hi Ron,

Glad to hear that got some sleep and that you can eat and drink again, good news indeed! A fish supper for tea??

I so agree with the end of your post that the alternative to not fighting is indeed not appealing.

Hope your having a good day and that it's slightly warmer down your way, it's baltic up here!

Best wishes

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update from Ron Smith

Gavin

Just the thought of a fish supper, with vinegar and brown sauce is so appealing, then I manage a tiny bit and the rest is wasted.  Breaks my heart.

It's to be cold next week but dry.  That's important for us just now because we are having our roof re-tiled.  It seems to take forever and of course, we are surrounded by scaffolding.  I can't even get out of the house.  What is really annoying is that the roof was completely renewed less than 12 years ago.

How's your dad these days?  Is he still as tired?

Take care

Ron

Re: Update from Ron Smith

Curiously, I have started to take cinnamon breakfast cereal.  I think in the States it was called Grahams, then Curiously Grahams but here now, it is just Curiously Cinnamon.   Not having it for breakfast but as a very early morning snack.  I know that in Florida everything is served with cinnamon, so perhaps I am trying to re-live enjoyable times, but, hey, who cares if it works?  And I have decided, no matter what happens, I am not destined to re-capture my fat-free, muscle-bound physique again so live with it and enjoy these little treats.  What a load of havers!  I was never muscle-bound!!


Take care y'all.

Ron

Re: Update from Ron Smith

Ron....And here I thought it was you on the cover of Man

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update from Ron Smith

Marion

To be honest, I think I was the model for the box.

Ron

Re: Update from Ron Smith

Can anyone answer this question.  can this thing grow 4cm X 2.5 in the space of 8 weeks???  Thats the size of your thumb.  I am freaking out here waiting for the oncologist visit.

peace, love and good vibes  Wendy

Re: Update from Ron Smith

I wish I could answer your question, Wendy. but I'm sure there are others who can help you & they'll be on here before long.  I hope you get reassurance from your oncologist very soon.

Love Julia x

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Update from Ron Smith

Hi Ron,

My dads the same when it comes to a fish supper in that he can only manange a little bit. So what we did was get one and share it between the three of us so that way he still gets his fish supper fix! It's not as cold up here today, but I've still got a pot of scotch broth bubbling up for mum and dads dinners this week. That should do the trick if the temperature drops.

I hope it stays dry for you this week so that the builders can get a move on and get your roof fixed. Mum and dad had the builders in for 3 weeks over the summer due to a flooded kitchen so I can sympathise with the chaos. They had to move out so went to stay in a B&B in Broughty Ferry, the posh part of Dundee!!! Hope your builders do a better job this time around.

Dads had a good weekend, still been sleeping during the day, but not as much as he was the previous weeks. Been going back to bed after getting the rolls and the paper in the morning but staying up for the afternoon so thats an improvement. Pains also been not so bad having upped his meds so thats also a bonus and he seems to be in a much better mood right now so just taking the days one at a time. Hope you enjoyed your Curiously Cinnamon this morning, I now have this image of you on the box as the model for the cereal! Sort of like the guy on the Scotts porridge box!!

Take care

Wendy,

Sorry, I cant help you with that. Hopefully someone else will be along soon who can help. Have you tried using the search function here? Maybe that would help find something.

Best wishes to everyone.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update from Ron Smith

Gavin,
I dont believe you. Dundee has posh parts?

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Update from Ron Smith

Thanks Gavin,
I checked them out seems it can go from 0 to 100 in 10 seconds, or anywhere in between.  Will just have to be patient until I see the oncologist.

peace, love and good vibes  Wendy

Re: Update from Ron Smith

Wendy.....when is your next appointment with the oncologist?  Have blood test been taken eight weeks ago. also?  Is is possible for scar tissue to have formed? 
I am crossing my fingers for good news,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update from Ron Smith

Consider me ignorant:  I love any kind of broth but, don't know anything about Scotch broth.  What is in it?
Have to find the box covers for Curiously Cinnamon and Scots Porridge.  Now, I am really curious.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER