Chris,

Lou is still laughing as I've just finished reading aloud your most recent posting (#375). You and your antics...wow, never a dull moment in your life. I just can't imagine how you can be bored. We anxiously await your Friday posting to hear how your scooter ride was received by observers. I know you'll have a blast...I think you thrive on simply astonishing those around you.

Poor Judith...she certainly has her hands full with you. I understand her desire to get out and teach others...she simply can't teach you anything!

ROCK ON CHRIS!

Birdmom - it's time to give us your update!

Warmly - Gayle & Lou :)

Dear Lou and Gyle, Susan and all you silent ones,

I,ve tried rocking as you suggest Gayle, but its bl..dy difficult seated in front of my computer, so now, I am sitting comfortably and can be suitably boring, or evil, or difficult, or tell big fibs, or.......anyone got any better suggestions.???

Didn't have time to beat up the Promenade or Pier yesterday, but did upset a few young kids in outrageous clothes with metal bits stuck all over their faces, 2 parking attendants, both Polish, both self satisfied that they have official titles and positions and the privilege of living in England, so can be quite nasty, and two dogs.

Best bit of the day was Mussels in a wine and cream sauce for lunch, with garlic bread and coffee.

Today its raining. THE PRICE OF LIVING IN THIS BLESSED LAND. "And was Jerusalem builded here, on England's Green and pleasant land".

Judith wants me to accompany her to Worthing, to collect a handbag she put in for repair yesterday. That's the price for being married !!!

All is well here, looking forward to the week-end.
Chris.

p.s. Gayle did you notice I got 375!!!!!!!

Gayle, Lou, Chris and all the others who appear occasionally,
It's good to hear from all of you. Chris, you have rain? We are going to get to 65 degrees here today (the last day of winter) and tomorrow (first day of spring) we will wake up to an inch or more of SNOW!!!!When will we get some relief? This has been a rough winter so we eagerly await some nice weather that will last. I did hear on the weather though that Denver, Colorado will get 6-12" of snow, so I will not complain too much.
Chris, I have a question for you. As you probably are well aware, we are fighting to get a health care bill passed. It has been a battle but should come to a vote on Sunday. How does your health care system add up? What problems have you had with your health care system, if any? I feel that health care should be available for everyone and not just those who have the money to buy a nice policy. We're being told in the US, that in the UK, people have to wait weeks and possibly months to receive care when needed. Any comments? There are so many here who have no health care due to many circumstances. I am appalled that there are so many people who cannot get healthcare due to preexisting conditions.
Did you get Judith's handbag picked up? My poor husband jumps through the hoops too to keep peace in the family, but it all works out in the end. We will be married 43 years next month. I started "going out" with him when I was 15, he was 16, and we got married when I was 18, so all is good.

Silent Birdmom is back! I went to Nevada for 5 days (3 of us old friends together) & gambled my heart out at my favorite casino. (Yes, that's another of my vices.) Had a wonderful time, all play & no work.

But I was anxious about you, Chris, so I'm glad to hear that you are recovering from this bout of illness. So your 75th is May 30? I'll be 71 on May 17. Or is it 17 on May 71?

Susan, 43 years--to the SAME MAN??? My goodness. It has taken me two husbands to get to a total of...hmmm, 16 years for #1 and as of May 3, 35 years for #2 (my current husband)...that's 51 years altogether.

Gayle, it's fun to follow in Chris's footsteps, right? Next thing you know, Lou will be wanting to travel to Zanzibar or some such place so he can keep up with Chris.

I'm delighted to come home to warm weather & sunny skies. I think our rainy season & freezing nights may be over, & I look forward to spending more time getting my hands in the dirt. My major interest these days is wildflowers, and this year should be spectacular with all the rains we've had.

MDS? What's that? I've felt wonderful, so the 3-week shots must be working well. I go in next Tues, so I'll find out if my counts match my guess.

Hi

Well I thought Id say hello. Im off next week to Brisbane, Queensland to see my family. One of my brothers (50 years old) has bowel and liver cancer. My family has had terrible luck with cancer. I have one brother and aunt with Chronic Lymph Leukaemia (CLL) and an aunt on my mothers side that passed away from Acute Leukaemia.

I thought Id mention that in early January I had become annoyed with the constant decreases in blood results and feeling exhausted. Terrified of what it might all mean I went to see a Nutritionist. I am a sceptic and therefore put no real trust in the Nutritionists tablets I was taking, but since I have been on the concoction of health remedies my last two blood results have improved (this increase has not improved how I feel). My Hb went from 90 to 96 and my WCC went from 2.5 to 3.6. My new specialist is sceptical, but we are both going to monitor the results to see if the tablets are having a long term affect.

My new specialist is not used to managing a MDS 5q patient and mainly treats Chronic Myeloid Leukaemia (CML) patients. The specialist seemed very nice, though he did hold much hope for getting Revlimid through the hospital system. We discussed the BMT option; it seems my sister is the better match for me... I thought it was my brother. He seemed really hesitant to go down that road (maybe he seen too many unsuccessful transplants). Whatever it was I definitely walked out feeling a little uneasy about BMTs.

So back to square one Ill keep taking the Nutritionist tablets until my body needs the chemo drugs. It seems to me today that theres not much I can do about how feel and theres not much anyone or medical science can do to help me feel better. I hate to imagine what I will feel like when this progresses. I am so use to just doing what I want. I now pay a price for having a busy day. Im quite over having MDS.... all I want is the miracle pill that will take it all away.

Just a quick question - I know that a lot of those contributing on this forum are further along in their journeys with MDS / Leukaemia, but prior to taking chemo drugs did you ever get nauseous? Both specialists have dismissed it as it is not an MDS symptom. For the last three months its been a real problem, so much so that two weeks ago for three days I did not drive because I was dizzy and nauseous.

On a lighter note I took your advice Birdmom - I started a bucket list. My first bucket list item is unfortunately a selfish one.... so number one on the list is I would like go to paragliding. Ive always wanted to know what it feels like to fly, they say its closest you can get to feeling really free. I have no desire to jump out of plane, but being on a glider seems to be the type of challenge I would enjoy. Chris that mussels in a cream sauce for lunch sounded wonderful, but you needed to swap the coffee with a glass of NZ Sauvignon Blanc. I was wondering if I should tease you all about the wonderful weather we get here in Australia, the only problem is we have no water. Its got so bad that we had to get some contract signed with New South Wales and Victoria to give us a small percentage of their water. How terribly bureaucratic! My last comment before I leave is that I hope Im married for 51 years, I think that sounds truly rewarding.

Best Wishes
Aussie Rachael

Wow, Some of the silent ones are back, hooray,hooray hooray!!!
Today is Saturday. Been to take Judith to her Chiropractor, had a couple of coffees, and sat around whilst Judith indulges her passion for going round shops looking for bargains.

Feeling OK, though in common with Rachel from OZ, I too am getting dizzy amd feeling faint, and next Thursday I will be asking the Vampires (Haemos) what they make of it. I guess, but I may be cpmpletely wrong, that my Hemoglobin is down, or RBC are down or something along those lines, but will see on Thursday.

Birdmom, congratulations, 51 years married and still so very young. Just shjows the power of good sex, well I hope that is what you have enjoyed, but its an odds on chance with a randy Ozzie as your present mate.
I have managed about 46 years and 6 months aggregate over three marriages, but had a hellof a good time in the process, though whether all my wives would should or can say the same, I hesitate to ask.

Now Susan, I have been following the progress, or sometimes l;ack of it in Obama's effort to bring in Health services for all. The NHS in the UK started in 1946, and was revolutionary. My big criticism of the present scheme, is that if everyone made a small contribution to costs, every time they used medical services, people would think twice as to whether they really need to see a Doctor, or not. Some services, here are slow, 3 to 6 months to get an appointmnet, but Cancer or suspected Cancer has to be seen to within 14 days. Generally our services are good, but I think the services would and could be a great deal better if the NHS paid the bills, and Doctors and Hospitals competed for patients. I do not ike the idea that all NHS employees are in fact Government employees, and do not have to face up to the acid tests of profit and performance. If hospitals and Doctors were all independents, I feel we would see considerable improvements in service, and considerably savings in costs. After all, if one hospital offers an Xray (eg) in 4 weeks, and another in 1 week, I know where we would all choose to go. Waiting lists could be got down if the interests of nmedical staff were tied in to getting the waiting lists down.
There is a lot to learn, from the system, rather than the objective which is to provide all with free medical services, irrespective of wealth. One can of course go to private hospitals, be insured and see private Doctors, but it is expensive.
But here people do not die in the streets from lack of medical attention, thanks be!
Hope this helps.

Hello folks hope you are all as well as our condition allows. I have really been enjoying all the posts and can't shift the image of Chris causing havoc on his scooter. I just wish I had more opportunity to post on here but by the time I am done with work and playing with my two year old daughter I am fit for very little.

Rachael

I have had very similar sypmtoms and like you was told they were not related to the MDS. Over time I have established that the dizzyness was caused by my body reacting to feeling so unwell. This is a form of panic attack (although I did not feel panicked) that is apparently often experienced particularly by recovering patients who are really worried about recurrence etc. I was very sceptical that this being the case but agreed to get some complimentary therapy to help me relax at times of stress. This has made an enormous difference and I can now stop the onset of dizzyness by just relaxing a bit. As I said I did not at any time realise I was overly stressed (I have a stressful job anyway) but it has really helped to learn relaxation techniques.

I, like you, am constantly nauseous and have a really sore head and these symptoms get worse along with aching glands (sometimes my armpits ache so much I get pins and needles in my finger tips) whenever I have not had enough sleep or have overdone things. So I can offer no advice there as I can't shake it.

Clearly things are different for different people but I had very similar experiences initially and it would appear that the severity of my symptoms and my low blood counts were because I had Chronic Fatigue Syndrome and then recurring bouts of Post Viral Fatigue. I found that when I was more rested my blood counts rose and symptoms improved and when I was fatigued my counts plummeted. At times because of my poor immune system I get viruses that I don't even feel and if I don't make some allowances then instead of a week or so of feeling horrible it's 6-12 weeks of torture. I have tried to see the positive in this by calling my nausea, aching glands etc my early warning system and when my symptoms get really bad I know that I am under attack and that for the next few weeks, even though I feel much better, I will need to get as much rest as possible. Now I have got into the habit I am feeling consistently better than before. As I say it may not be the same with you but it works for me.

As for the BMT, studies have shown that for the under 50s that are in the low or intermediate 1 category then the best results are found by avoiding transplant till the last possible stage (I mentioned a study previously "myelodysplastic Syndromes in patients younger than age 50"). This was frustrating for me initially as I suppose the mentality we have at work is if something is broken and needs fixed then let's go do it. Having read the study and the results etc I am happy now with the watch and wait treatment and am just trying to do as much as possible while I still can. On a positive note avoiding transplant seems to lift average life expectancy for my grouping (Intermediate 1) from 5 years to potentially over 10.

As for the miracle pill. They have only been doing BMTs for about 30 years and with advances in Stem cell research I am convinced that if I hang it out long enough then it will be a tablet I am given with my dinner and all will be resolved....here's hoping anyway.

I hope this is of some help. In the meantime make like Chris and cause mayhem while you can.

Ally

Hi Fireboyle,

Thanks for your kind response. I don't have Chronic Fatigue Syndrome nor do I have panic attacks (though I had one of these in my very early twenties, but your comments on viruses made sense to me. The new specialist commented that one of my blood results indicated a "type" of infection that did not make sense in comparison to the other blood results. I feel quite certain that this maybe the cause of my nausea. Thanks very much for your advice, it has made me less worried.

With thanks
Rachael

I almost feel ashamed of myself for feeling so darned good when Ally and Rachael are so much younger & having more symptoms.

Ally, I had read the same thing about waiting for BMT. Doesn't make much sense to me, but there must be factors I don't know about.

And Rachael, I had asked about high eosinophil counts a while back, wondering what it meant. Apparently, it could have to do with an underlying infection. I'm wondering about the figures for you and Ally. Last blood work, that count began dropping, so maybe it's resolving itself. I see the vampire Tues, but not the Dr till April.

Christopher, never a good idea to ask your exes for their opinions. My ex kicked the bucket, so I couldn't ask even if I wanted. Marriage to an "Ozzie" is never dull, that's for sure.

Rachael, I suppose that by definition a bucket list is "selfish." I don't like that word very much. We must treat ourselves right before we can do so to others, eh? At any rate, I hope you will accomplish the experience of paragliding. Me, I'd love to have done that 30-40 years ago before I turned chicken.

Hello All,
Sunday. Woke with the alarm clock, switched it off, didn't get out of bed and slept through from 6.45 am till 10.00am. So missed my church services, the very reason for the alarm call!"
At home, doing little.
Getting a hriible echo in my right ear, the one that had the mastoid operation, and cannot stand my own breathjing or any noise. Thank goodnes the computer is silent.
Im OK.
Love to all
Chris

I also missed Church due nausea and just not feeling quite right. I did get my nails done yesterday so yesterday wasnt a bad day. I want this to pass so I can feel somewhat normal again. I have too much to do and too many places to visit to give in to this awful disease. I did start keeping a log to see how I feel before and after chemo to see if there is a pattern. Who knows. I never set an alarm clock. One of my symptoms has been to wake up in the middle of the night and not being able to go back to sleep. Does anyone else have a bad taste in their mouth sometimes? Not sure if this is part of the disease or just another pain in the butt. I hope you all are doing better and keep in touch.
Susan

Susan,
Horrible taste in mouth, plus sores in mouth, Yes my hand is UP!!!
Indigestion and cannot get rid of the wind at the top of my stomach. My hand is UP!
Waking in the middle of the night, and cannot go back to sleep, my hand is UP!
Feeling dizzy, a new problem. My hand is UP.!!
But I am determined to be alright, and not let this bl..dy thing get me down. It is the only way.
Christopher.

Morning

One of the benefits of the not sleeping thing is that it gives you lots of quiet time to get work done. It's 07:30hrs and I have been at work for nearly an hour and with the rest of my team not due till 08:00hrs it means I can get lots and lots done (there are positives to everything it's just that some are bl***y hard to find!)

I forgot about the horrible indigestion and wind and how often I wake up after having been sick in my mouth (sorry for this unpleasant image). I find that I now need to ensure I have not eaten or drunk anything for at least three hours before going to bed if I want to avoid this very unpleasant symptom. It's amazing that through this forum I can now see that we share a significant amount of the symptoms that I have repeatedly been told are not MDS related!

Regards

Ally

Monday 22nd March 2010. 10.10 am
Dear Ally, I deeply regret, as I am sure you do, that we both appear to share some similar problems.

Off to London this morning, to take Judith to her student to whom she treaches Spanish.
Good opportunity for me to have coffee and cream cake. I love it.
Feel good today, feel well also!
Chris

Grrrrr. Posted a while ago, & it's not here.

I said that I did experience some of the problems mentioned in the latest posts. BUT! I have GERD (reflux). I've had to double my dose in the last month. I normally sleep on 2 pillows, our bed is raised at the head about 6", & I try not to eat within 3 hrs of bedtime. It hasn't been enough.

Between the gas, heartburn, & icky mouth--all symptoms of GERD--I never thought of connecting them to MDS. My oncol would say not.