Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hello, everyone. I just joined your group & read everyone's posts. I was diagnosed April 2008, but know that I had anemia at least during the previous October, because I tried to give blood & was turned down.
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
All in all, I'm not thinking cleverly as you did, but I would wish for us to concentrate on livin', lovin', & laughin'.
In this place, we can talk about our fears of the future with others who understand, unlike your Bogota friends. That's so important an outlet.
Still, you are obviously outdoing your prognosis, & I hope for you that you get to do those things left undone in whatever time is left.
Certainly, you brighten all our days, & I thank you for that.
Click! Don't think they want mine.
I'm definitely in the Christmas spirit this year. Decorating the tree while it snowed was a real treat. But we're happy to have just rain and keep it above freezing.
Chris, I'm curious. How did you happen to be in Bogota when you met Judith? It's not exactly on everyone's list of must-see places to go. And when are you coming home?
My best Christmas wishes to all those who post and/or lurk here. It helps when you can share with others going thru the same thing.
A bit of history is called for.
I first came to South America in 1940, when my parents decided to send me and my three sisters to live in Argentina, which we did for 5 years. We returned home in 1945, speaking rather better Spanish than English.
31 years later I came back to South America, trawling the world for business opportunities for a very large UK company, for whom I worked. I had just booked a contract in Saudi Arabia for 400 Million pounds sterling, to manage construction camps for 20,000 men in the desert, for petroleum contracts.
Naturally the company wanted more.
I spent the whole of 1982 in Colombia chasing one contract worth US$ 100,000,000, signed the deal, established the company and got it going and then went off to try to do the same in Papua New Guinea (for those with no geographic knowledge, just North of Australia.)
In 1985 I was ill and went back to the UK, and when I recovered I worked in the UK, for two years, but had itchy feet, and our marriage was on the rocks, so I decided that I had a bond with South America,and came out to Colombia, on a self employed basis to try and establish a market for a very good product.
Whilst here I met Judith, but had to return to the UK when my Mother died in early 1987. I promised her that when I had a house, a job and a car, she could join me in England. She arrived.
2 weeks later, I took her to an office. The man behind the desk asked her a question. She had forgotten all her English. She looked at me, I said in Spanish say "Yes" Again a question, say "I will" another say "I do". We left the office. She asked me what that was all about. I told her we were now married. She seemed pleased. We rang her Mother who was delighted, and now weve been married 22 years.
End of story. You may make your own guesses as to which bits are true, and where the truth has been enbellished.
Saw the Local Vampire yesterday. Platelets up from 22 to 27. OK.
Hemoglobin up from 9.5 to 10.5 Good. WBC up from 22 to 30. Not very good. A few more pills to take, which leaves less room for quality food. Feeling fine, and going about life as normal.
Any more questions Sharon????
Love to all.
Christopher.
Was Judith born in Bogota?
I love your story about the man in the office. H always tells everyone he picked me out of the gutter, felt sorry for me, took me home, & cleaned me up. Married 34 years.
Your counts aren't wildly overabundant, but they are all UP. Much better than down.
I have a recent picture of H & me posted on my website, if you'd care to take a gander:
http://www.birdmom.net/family.html
Chris, you didn't say when you were going home...
Judith was born in Cali, a rather warmer City than Bogota. Her Father had a large Beef farm, but died rather young, so the family came to Bogota. She had two sisters and 5 brothers, amazing these Roman Catholics, dont know how they have time for anything else.
We return to UK on 29th December arriving on 30th.
I have three sisters,. My Mothers brother was in the wool trade, trained in Bradford in Yorkshire and went to the Argentine as a Wool Buyer, and made a lot of money there! Towards the end of his life he was Knighted for services to the British Community and British Hospital in Argentine. We went to live with them but they had a young family so my youngest sister lived with them, I was sent to Boarding School but was soon taken away as at 5, I really was a little young, and then I and my eldest sister lived with Paddy and Olive Brown, in a huge house in Florida,(Buenos Aires) and an estancia in the hills of Cordoba. Paddy was Irish, Olive Welsh.
My other sister lived with a couple,Dick and Peggy Berci, he was an American and she came from Leeds, near where I was born. So we were split up, but met frequently.
Yes the whole idea was to keep us safe from nasty Adolf Hitler.
Am seeing a Haematologist on Wednesday with another blood test as I am concerned at the WBC count of 30. Today I have come out with purpura all over my legs below the knees. Ugly, so will give up shorts and swimming pools till it goes.!
Will check you out on the web.
All the best.
Chris
Maybe we'll all meet one day...that would be fun and something to look forward to.
Gayle & Lou
Had my blood test Mon, plus another Aranesp shot. My count was up slightly, so that expensive stuff is working, & I have more energy than I've had for a long time. When I see the hema next month, I have questions for him about how long it might work, & does it have anything to do with the estimated life span for the disease.
Chris, you had a blood test yesterday, right? Let us know how it turned out. I didn't know what purpurea was, so I looked it up. Tell us more.
Merry Christmas, everyone!
Purpura, is a large patch of purple spots and rashes. Seems it is a bi-product of Chemotheraphy. Does not itch or hurt, (in my case) but loooks awful.
Had a blood test and consultation yesterday. WBC up to 32, which is just an indication of how easily I can get an infection. Hemoglobin gone up to 12.2, a miracle. Platelets as usual virtually non- existent. Doctor, (charming, young, sweet, but good) has increased my Chemo pills to try and bring the white blood cells down, but I am also seeing her again before we fly on the 29th, so that I am in the best condition possible to fly on an American Airline.!!!!!!
I am a dreamer !!! I have often thought that if I won a major amount of cash on the Lottery, I would invite y'all to meet for a weekend somewhere central. Yes it would be good, but we'd also have to rake in those who used to contribute to this column but have dropped by the wayside.
To all of you, Happy Christmas, dont eat too much, plenty of exercise afterwards, and I hope Santa Claus brings you all those material things for which you hanker, and plenty of Christmas Spirit.
A Clergyman, was very keen to constantly condemn the evils of drink, particularly in his sermons on Sunday. One of his parishioners knew that in fact he had a soft spot for an occasional tipple of Cherry Brandy.
The parishioner told the clergyman " Vicar, I will give you a Bottle of Cherry Brandy for Christmas, if you will acknowledge the gift in the Parish Magazine". The deal was done.
In the January edition of the Parish Magazine appeared the following, signed by the Vicar, " I gratefully acknowledge a Christmas Gift from a Parishioner of a bottle of Cherries, and the Spirit in which they were given,"
Happy Christmas.
Chris.
Merry Christmas everyone. Hope all have a wonderful day and can eat hearty.
Chris, I will pray for traveling mercies for you and Judith.
Mary In Alabama
My salvation will be resuming line dancing after New Year's.
I forgot that your white count needs to go down, not up. I can't believe that your hemoglobin is so good. I don't understand that at all.
Mary, I join you in hoping for a safe flight home for Chris & Judith.
Hope Santa has been good to everyone!
We leave tomorrow Tuesday arriving in London at 7.oo am Weds morning, when you all will be asleep, I hope!
Thanks for your good wishes for the gflight. I do not enjoy flying, I have done too much in my life.
Busy packing. Do we need 4 suitcases or 5? What is the weight of each.? Are our luggage scales right? Are any over 23 kgs.? Have I left anything, I should have packed? Have I packed anything I should have left here? Where are the bl...y passports?
I am exhausted at the process. Want to be home in England.
Can you just imagine me with a face mask over my face for 15 hours?
HORRID!!!!
Love
Chris.
I just wanted to wish everyone a happy New Year, & the hope that 2010 is a much better year than 2009!
Tonight happens to be a blue moon, for those who are interested.
Lou and I caught headcolds about a week ago so we're just being lazy and watching football. I wore a mask today for the first time...when we went to the Cancer Center for Lou's last shot of 2009. With every breath I fogged up my glasses...yuck!
Here's to a great 2010 for everyone - HAPPY NEW YEAR!
Lou & Gayle