Hello Folks,

Today was Vampire Day at Worthing Hospital. Blood test at 8.55 am, Consultant at about 9.30 am, and left for the Pharmacy to renew my large stock of pill at 9.55am, left the hospital at 10.30 am. So far so good.

Hemoglobin down to 8.2 so two units of blood ordered for next Tuesday 26th Jan, which also means a Cross Match Blood Sample to be taken on Monday 25th Jan. Generally a six hour ordeal. White blood cells down to 7.5 which is good, but my platelets....hold it....hold it....wait for it......7. Yes I am not joking.! (SEVEN!)
Haemo/Oncol, reckons I am doing OK. Slight reduction from 11 pills of Chemo to 9 pills per week. Its all a question of finding the right balance, but the point of balance changes. He reckons that attitude is a big contributing factor, so I will continue being impossible.!
Cannot say there is nothing to worry about, but I have been High Risk for nearly 17 months, so am not grumbling. If there is anyone out there who needs a bit of encouragement, or a kick up the b..., just let me know. I am OK, and happy, what more could I hope for?

Love to all
Chris.

Hey, you impossible man! I presume that most of this is basically good news for you.

Now that you've pointed out the error of my ways (I am indeed over 21, & going downhill all the time), I'm over my funk. I was just darned tired from working 7 days a week to meet my deadlines, and didn't realize how stressed I was.

So--I am once again grateful for feeling well, and my counts are absolutely delightful compared to yours.

Thanks for the kick in the butt, Chris!

Hi Everyone,

Chris - you are soooo right. Attitude and outlook will prevail...you're too crazy to give up the fight. Birdmom - I'm so happy you've settled down again. Tell me again what you have been working on so seriously ....are you still gainfully employed?

I'm back to work but only part-time...I still am very weak from the nasty bug that invaded my body on the 9th. Today's my birthday and they had a yummy cake for me at work.

Lou's doing pretty well but the doctor may change him from Procrit to Aransep...not sure yet, just a maybe. Lou's next vampire visitis on Feb 5. Be well everyone.

Happy birthday, Gayle! I'm glad you got a cake. I seldom do, & my daughter, who also had a birthday (day before yours), says her "cake" was a slice of bread with peanut butter for frosting & a candle stuck on top. Her husband is really very good to her, & fixed her a wonderful dinner.

Gosh, Gayle, I only wish I were paid for the book I just finished. Unfortunately, NOT! It's called Director's Source Guide, and is a detailed reference book to assist the board of directors at my former RV co-op park, of which I'm still a member (& once served as a director).

Occasionally, I get a paying job as an editor, but I'm not looking any more.

I'm wondering if the fact that I overextended myself to get the book ready had something to do with my falling count. We'll see what happens in 3 weeks...

Tell Lou that up until now, I've been pleased with Aranesp, if that's what he is going to get.

Gayle,
Happy birthday from me too. This should be 290, but resisted the temptation to let you have it. Quiet week-end, before Monday, Tuesday and Wednesday, all days with serious needles into my hand or arm. I still hate them, even after all this time. Still I feel it is preferable to having screws or nails drilled into keep the coffin lid tight.!

So I keep going.

Incidentally, I have now lost 25 kilos (thats 55lbs, or as we Brits would put it, just a pound short of 4 stones) The new slimmer line means people see a lot less of me, and that must be to their benefit. Still want to lose another 11 or 12 kilos, or preferably get down to
14 stone i.e. 196 lbs at which point I will have lost 30% of my body weight, and spent a ruddy fortune on having suits and trousers re-tailored.
The Chemo tablets that form part of my daily breakfast diet, help a bit I am told, but the main thing is bloody minded perseverance!
Love to all,
Chris

Your weight loss is impressive, Chris. And here I was congratulating myself on finally losing the 4 lb I gained during the holidays.

I'll be thinking of you these three days being needled.

No needles for me till next month, ha!

I was had a bmb two days before Thanksgiving, waited for 2 more weeks for the results and was diagnoised with MDS. Dr advised that I am 30% into the disease and we have to wait and see. So I go back in April for blood work to see how it has/has not progressed. Was in shock and still wonder and search all websites about this disease.
My symptoms...fatigue, bruising and if I get sick with flu/cold I am really sick and takes me longer to get over it. Don't know what to expect. Really ok until I get still and think about it, then my mind begins to whirl and wonder what to expect.

Welcome to our little community, GIIC, although I know that you'd much rather not have to be a part of it.

It will take a while to absorb the shock. It's not a common disease, yet my father had it, so I at least knew of it before I was diagnosed a couple years ago.

The symptoms you mention are ours also. I can't tell you what percentage I'm "into" MDS, because my Dr doesn't refer to it that way. I do know that I'm in one of the "better" groups, & if you've been told which group (there are 5 subgroups) you are in, let us know.

I know what you mean about being okay/not okay. Most of the time I can ignore the fact that I have it, as mine is long-term. But I know my heart is working harder to bring oxygen to my body, so I don't forget for very long! I'm on Aranesp shots, now every 3 weeks, & being poked & getting your latest count also make it hard to ignore.

At any rate, we'd be pleased to offer support if you care to join us.

Welcome GIIC....settle down and know that as far as cancer goes...this one is not too bad to have. Aside from the fatigue, hopefully you'll be just fine for awhile. Feel free to ask away...this group has an extensive knowledge base and we're all happy to share our stories to help you be strong to get through each and every hurdle. Wait until you get a load of Chris...he's a hoot. If you have the time...read some of the original 290 posts...they are very interesting. While some posters have moved on and no longer post...they may be reading and resume their participation one day. Good luck and best wishes!

Gayle & Lou (Bend, Oregon)

Dear GIIC,
Now there is a name we will be unable to unscrable without some help. WE could run a book on what it all stands for, but feeling rather thick today, I unfortuneately cannot even start to guess what those 4 letters (or is it leggs 11 in the middle) stand for. Could it be glamorous Cutie with two legs? Or Glorious Italian from Indiana's Cherokees? You will have to let us into the secret. I am uncomplicated Christopher John Barr, 74 years and 7 months, British to the core, living in West Sussex, in the South of England, irrascible, charming, cutting, a comic at heart, and a great friend of all your American customs except George W. Bush, Grits and Hamburgers.

Well, you have done the right thing in my 'umble estimation joining us on New Member. Please do not run away with the idea that I am humble, cos I am not.

My story is simple. Went into hospital in August 2008, and they found before the op (which they cancelled) that I had platelets of 66. A bone marrow biopsy and blood tests showed I had MDS, Upper Intermediate with excess blasts, Refractory Anaemia etc, so it sounds that I started up the scale ( or should it be down the scale) from you, middle risk and was given a prognosis of 1.2 years, (which passed in November 2009.) Not too much trouble, except that I have now moved on to Acute Myloid Leukaemia. I hate injections, blood tests, and transfusions, all given by Vampires. Have a bit of trouble with a cough, bleeding nose, bruising, tiredness, irascibility, and hospitals with Vampires. Had a bad dose of Purpura in December when we went to Bogota Colombia for 4 weeks. Now faded.
Was offered full blown Chemotherapy, which would have involved 2 injections every day for 14 days ( 9.0am and 9.00 pm, then 14 days off. Repeated for 9 months. Chance of it being any good 15%. Chance of living to the end of the course 15% SO I SAID A VERY LOUD NO, NO, NO!!!! I wish to preserve my quality of life, do not want to be sick, have headaches, let my lovely hair fall out and be a pain to my family. I have a rare problem, I have 3 Chromosome 8's, what Birdmom, ( Sharon to her intimates) calls a crummy little sub branch. Now I take Hydroxicarbamide daily by mouth, and the dosage goes up and down in response to my fortnightly blood test and consultation with the Haemo,Oncologist.

Last 7th and 8th August, almost 6 months ago, I was given 3 to 6 months to live. Cross my fingers, the six months comes up in 11 days, and I feel fine, though yesterday I had 2 units of blood. Wot the Vampires take, they sometimes give back....Hurray!!!!!

I am determined to live as long as possible, do all the things I want to do,enjoy myself, and not worry. I tell everyone what is wrong with me, and few believe me, for I look fine, feel fine, am losing weight, and love my life, so they all reckopn the Haemos are right up the creek.!
The important thing is not to let MDS get you down emotionally, because if you do, it will get you physically.
Haven't quite gathered where you live, but hope all goes well. Get your worries off you chest, write to us on DS daily, and things begin to look better, feel better and eventually become quite enjoyable. Read what I write, but dont take me too seriously at times, a couple of sack fulls of salt will help the message go down.
Keep writing GIIC, and best of luck, live, passionate kisses, and shared emotions.
Love Chris.

Dear All,
The end of the Vampire half week. A Cross match Blood test, on Monday. Someone used it to make black pudding, or paint the town red, or act as imitation blood in a film, or they just baked it too much, so had to return to hospital for a second blood test. Yesterday two units of blood to make up for my 8.2 Hemoglobin, and was told today that approx, each unit of blood will lift ones Hemoglobin by 2 points. Kings College London, today, and yes, Hemoglobin now 10.5
Generally I am OK, fairly weell contained and balanced, but take nothing for granted. The unexpected is always round the corner, (I hope she is blond, blue eyed and boooootiful!)

That 4 needles in three days. I need a long rest from Vampires!!!!
Love to all
Chris.

Chris and all,

Oh my, I just read your recent postings to Lou. We are both amazed by your candid comments and we are inspired by your optimism. Lou doesn't care to fly but we have decided that a trip to Hawaii would be great fun. We haven't been there since 1978 and we have relatives there. My brother and his family live on the north shore of Oahu. We're inching forward toward making our thoughts a reality but now Lou is starting to drag is feet. We're both worried about leaving our 12 year old dog with a housesitter...we've never left her before....so we're apprehensive and excited. Unfortunately Lou starts backpeddling when we get close to something that makes him worry and I expect this trip to drive him right up to the edge...but I'm holding my ground and trying to move steadliy forward because I feel this trip will be great fun and relaxing for us. It's all about the dog...the two of them are great friends and he finds comfort in her company...as I am still working full time.

I'll keep you all informed on our progress.

Gayle & Lou

Hey Chris...here's #297 - watch me go!

Gayle :)

Chris - here's #298 (I know I'm cheating...but this is fun)!

Simple pleasures..

Gayle & Lou

OK...here we go...#300. I'm thinking this is cheating...but i'm actually laughing aloud...and can't wait to see your reply. Go ahead and try for #350. :)

Ah...the sweet smell of success!

Gayle