So how are we all today?

Firstly let me comment about and brag about bagging the No 200 slot. What you good folks in the USA need to remember is that we in England get up before you each day, and whilst you are dawdling in your beds we are up and about, getting on with life. Then, bearing in mind the old adage" Early to Bed and Early to Rise, Makes a man healthy, wealthy and wise". we go to bed before you do. No wonder we have so many advantages in life!!!!

Went to Kings College in London, and yes I have Acute Myloid Leukaemia now, but the oral chemo is working and keeping me fairly steady and I am not going down hill like I was 2 to 3 months ago.

So life is OK, but the snag is that these Chemo drugs stop working after a time. Then I may go downhill. But when, nobody can say.

Good luck to us all, and don't get too hung up about your counts. My platelets are at 22.!!!! Wow!!!!
Love to all
Christopher.

I love your attitude Chris!! :)

Chris - you are amazing. Your approach to each day gives us all strength to move forward to tackle our own days. Keep posting...you're great fun. Thanks for sharing!

Gayle & Lou

PS - Lou's doing well ...steady as she goes. Next Tuesday we go to the blood doctor to find out for sure. He was 10.5 for 8 weeks...now 4 weeks later...we're hoping for more but will be satisfied as long as he stays strong.

Hello there, you poor old MDS sufferers.! A short message from an advanced sufferer! And thanks to Cherl and Lou and Gayle for your comments. No word from Sharon, the Bird Mother recently, but in her mountain hideout, its probably time for a winter of hibernation!!!???!!!

Tuesday I will be going to Worthing (my local hospital just 10 miles away) for my regular seesion with the leeches and Haemos. Quite an important session as Judith and I have decided to fly to Colombia (Bogota) on December 1st and return December 29th. I have bought some marvellous looking masks to wear on the planes, (we fly Delta London-Atlanta-Bogota) and tomorrow I have to organise full documentation to take with me, and a blood transfusion to top me up before I go. This is advisable as Bogota is at 8,600 feet, and just a tad short on Oxygen. I have put in place, a Haemo appointmnet in Bogota, and a couple of bolt holes at a much lower altitude if the shortage of Oxygen gets me down. I'll try and write tomorrow, when I hear how many leukaemic cells are floating around and coursing through my blood like alcoholics when the bars open!

Keep writing
Christopher.

p.s. Judith thinks I am impossible, and she is probably right!

You're so right, Chris. I've been hibernating up here in the foothills. I'm still trying to shake the bronchitis I brought back from my trip. I've been laughing at your posts, even when I haven't posted myself.

My hat's off to you for even thinking about going to Bogota. But I can understand the desire to go. Can you take portable oxygen?

Sounds like most of us are in pretty fair shape at the moment. Let's keep it that way!

Sharon,
I suppose portable oxygen is avaiolable, and if needs be I will get some . Thanks for the suggestion.

Thius morning I was told that the White Blood Cells, with all those horrid Leukaemic rubbish are a bit high, and the Haemo has adjusted, very slightly my oral Chemo. Have a sore throat, so back on antibiotics, another 28 days on a syrup that is supposed to keep off the mould, and chmo incresed. Still I am doing OK, thanks, and looking forward to seeing four of my brood, who live in Australia, Hong Kong and Dubai, and one who lives in SW England. We've rented a cottage for 5 days, in the best seaside town in England. WE need to laugh, drink and be merry!!!!!!!!!!Yippee!!!
Christopher.

Hi Everyone,

Today was our monthly visit to the oncologist. Even though Lou has been on 60,000 units of Procrit for the past 8 weeks, his hematocrit fell from 10.5 to just 9.8. Geeze, he was diagnosed with MDS when he was at 9.7. Feels like we're starting over...oh well, the doctor wasn't very concerned. He said we still have options. Doctor explained they could add a white count promoter to the Procrit or change to the Aransep. We'll see where we are in 4 weeks.

Good vibes for everyone out there dealing with MDS. We're stronger together.

Gayle (and Lou)

Chris, when is this reunion at the seaside? Sorry to hear about the step backward, but you seem to be a tough ol' bird. You have much to look forward to.

Gayle, I've never been clear on the difference between Procrit and Aranesp. My Dr said the Cancer Care Center I go to only uses Aranesp, which sort of indicated to me that it was better (?), but last time I was there, I overheard another patient getting a Procrit shot. Go figure.

Maybe it will take a little time to figure out just what Lou needs to get his count going in the right direction.

Sharon - Regarding the difference between Procrit and Aranesp...Lou's doctor tells us he started with Procrit because there has been more testing done with Procrit...more analysis. They both seem to work for certain people. I believe if Procrit doesn't start performing again for Lou...that he may be switched to Aranesp. More details to follow.

Good Luck Chris - we're holding great thoughts for your big trip!

Gayle (and Lou)

Hello Birdmom, and Lou & Gayle.
Since this column now seems to be the private domain of the four of us, I must try and keep up the comment.

My seaside sojourn staretd last Weds, when I met my daughters who live in HongKong and Dubai in at London Gatwick Airport. I drove down to Devon 240 miles. Had a blow out on the front wheel! All well. My son who lives in Australia arrived on Thursday. LOvely time. But then his sister (by my first marriage) arrived with her husband on Saturday. Not my invitation! She acted as tho nothing was wrong, yet I have heard nothing from her for 7 + years. She wanted a kiss, I said I would have to think about it. No apology for 7 year silence, or not asking me over, or to a christening, or any Christmas card or present.......and all the rest. I was furious. Eventually I met with her, unwillingly, cos frankly I just hurt too much. WE are now supposed to meet before 1st December half way, to have lunch, but she is supposed to write to me, and so far has not done so. Will she....I doubt it. Her husband, a rich American, former Senator from Nantucket seems to have no control over her, and doesn't think matters are unusual or unacceptable, and believes my job is just to forget the past and forgive immediately...a bit hard.

Well Lou, don't worry about your counts too much. They are like Yo-Yo's up and down up and down all the time. When the Yo-Yo staops working the string gets in a knot.

Yes we are both looking forward to 4 weeks in Colombia, though I have some reservations over how wise I have been to book it. Still, nothing ventured, nothing gained. But of course I still have firmly in the forefront of my brain that 3 to 6 months from 7th August takes me to.....7th January.

So here is hoping, that all will go well, and I will get some extra time.

Happy November 18th to you all....its a wet and very windy day here.
LOve
Christopher.

Chris, Birdmom, Gayle and Lou,
I have reading the post connected to MDS for 2 0r 3 weeks. I am trying to learn as much as I can from Patients and other websites. My husband (88) was diagnosed in Sept. 09 with MDS. I feel like I have been easedropping on your conversations. For that I am sorry, but you have all helped me very much in my quest to learn.
I have been concerned for all of you. I even requested prayer for all of you but especially you, Chris. You have been so encouraging. You are facing this and my husband seems to be in denial. I suppose that is his way to deal. But it makes it hard on me. I cannot talk to him about it and like all women, I have to talk it out.
We have had 31 wonderful years together and I know he is ready to go. He is in the early stages now. We go to the oncologist on Dec. 7th.
Thanks for listening, I don't feel like I am easedropping as much now, Gods speed to you all and Chris, enjoy the month of December.
I look fowarding to hearing from you before December 31st.

Thanks
Mary in Alabama

Welcome Mary - Birdmom started this long, long discussion group back in February, and boy I'm sure glad she did. I believe those of us who have read all the posts and then joined the discussion group, were attracted by Birdmom's opening post and subsequent concern for everyone who joins.

I'm also hoping there are many readers/visitors in addition to the few of us who actually post. I'm sure I speak for all of us when I say we wish you all well and hope that our comments are a small comfort...just knowing it's easy to connnect with others in the same boat ...that's a comfort to me.

Chris - Lou and I both find your comments entertaining and enlightening. I read the recent postings to him and he says you're a real "charger"....full of life. Keep up the good work!

Chris, Lou wants to know if you've ever run across an Aerial Square Four motorcycle in your travels. He's always wanted one and we can't find one anywhere around here.

Lou doesn't type but really enjoys the postings...we stop everything we're doing when there's a new post so I can read your comments aloud.

We look forward to your new postings.

TTFN - Gayle & Lou (Oregon)

Hello everyone! After reading the entries for 2 months I have decided to take the BIG step and join in the group. My husband was diagnosed (9-09) with Pernicious Anemia (is currently on B-12 shots for life) and Myelodysplasia. Dr. said he is in the early stage of Myelo. and it was not cancer. He has been taking Arenesp, and has had 1 iron infusion. His RBC is still under 12 but he goes tomorrow for labs and possibly a Arenesp injection if his numbers are below 12. I am so encouraged to be with this group and to find out all this information as it is like pulling teeth to get it from the Dr.
Thanks for listening!! and glad to apart of the group!!
V-gal

Dear All,
Gayle please tell Lou I have never heard of an Aerial Four Square Motorcycle, but I will either buy a copy of a magazine that deals with motor cycles, or see if the Newsagent, can let me have a free look, (much better) (must save up for the lunch after the funeral)and I will let you know if there is anything in it. Keep writing.
Hello and you are welcome V-gal. Tell the old man from me, that Heaven is as good as earth and much much better than the USA, (well it must be) so he must lighten up, and accept that we are all bound to go sooner or later, and the only difference is that WE, know, or think we know how we will be despatched, though that really is not too clear, for we do not die of MDS, its a subsequent infection that does the deed. So we have the opportunity of wondering and getting excited about will eventually get us down. Perhaps each of us, within our families, should start a lottery, and sell tickets, for "heart", "lungs" "kidney", "stroke" "internal bleeding" "liver" etc etc, and keep the profits, and go out for a damnably good dinner.!

Anyway good luck, and do keep talking to him, cos it is the only way. But if just diagnosed, he has a long way to go, and plenty of time to reflect and enjoy the rest of his days, on a day by day, week by week, and month by month basis.
Love Christopher.

Hello Mary in Alabama,

Thanks for your very kind comments, you Americans are really too too too too nice to me, I am sure as a poor little Brit, I do not deserve, your kind words.

However, I appear to be completely senile, coss I replied to V gal, when I should have replied to you. So please read all my offerings, and pick out the bits that apply to you.
However I do think that the shock of having MDS diagnosed, may have made you just a tad pssimistic. I've been diagnosed for 15 months, but clearly had it for 9 months before that, ans whatever the average life expectancy is, I have no intention of withdrawing from these discussions just let.

V-gal.

It is sometimes convenient to be told that MDS is not cancer, but I am assured that it is, and the biopsy proves it, but it is a funny cancer, for we feel lottle or no pain, tired yes, and the bones hurt a bit at times at the joints, but not much more. It is a problem that gives us a chance to live our lives enjoyably,laugh and be happy,knowing that MDS is pre-Leukaemia (its old name) and that most of us, will in time, as I have progressed to Acute Myloid Leukaemia. But I am still raring to go, good job you American girls are safe the other side of the Atlantic, or I'd become involved, as would you all in some horribly messsy divorce hearings, all the accusations of jealous hisbands, which of course we would rightly deny.

So just keep living.
Christopher.