Tuesday 23rd.

Dear All,
Been to London again to day, left at 6.00 am, and returned at 2.30 pm. Its enough to drive an old man like me MADF, mAd, MaD, or at least demented. But am OK today, just tired.
Chris.

Chris, your London trip was similar to my somewhat shorter day in Fresno--left at noon, back at 4:30. That was after gardening early this morning for the park 5 miles south.

My Fresno trip was to see the vampire & run errands. Hemoglobin went from 10.6 to 9.9, but I've been lower, so scroot. I still feel fine. Next time (in 3 weeks) I see my oncologist.

Wonder how the new health care bill will affect folks like us?

Morning folks

Feeling good today especially as weather here is clearing up, still cold, but nice and bright.

Chris and Birdmom

No wonder you are tired with those trips to see the vampires etc. I am lucky in that the Hospital I attend is only a few miles from home so it is only the waiting around for my blood results to come back (before I see the specialist) that I have to contend with. Nothing that a good book can't deal with.

Here is hoping the onset of better weather (and yes I have read with great envy the fact that most of you are already enjoying great weather) means that we all keep our spirits and levels up.

Ally

Dear All,
Another day older and deeper in debt.....! An old song, but I cannot remeber from where it came.

Dentist this morning, then a trip to Heathrow Airport, collected my wife's niece and her son who were returning from Colombia, the3n a few hours in her house and now home at 7.30 pm.

Enough for today, tomorrow is Vampire and Haemo day, lets see what is the current state of CJBG.
Bless you all
Chris.

Sounds like you all have been busy. I almost had to stop and take a nap it fatigued me so much...:). Just kidding of course. I had my blood work done yesterday and my hemoglobin was 8.8. Into the hospital today for a couple quarts to rev up my engine again. This is probably best since we are going to Gulf Shores, Alabama, to the beach for a week with my daughter and 3 young kiddies. Then hubby and I are off to Texas for my April 8 appt. Then to somewhere south of Waco, Texas to go camping, boating and fishing for a few days. We will be gone for about 3 weeks. I'm bummed about having the transfusion because it sends a message to me that something isnt quite working like it should be since I've been on chemo for a year. We shall see. It is warming up here some and we've had a few nice days but it's off and on. I was hoping to have more energy after the transfusion but so far it hasn't happened. I did not sleep well last night , so will blame it on that. Hopefully tomorrow will be better.

Susan,
SNAP! Been to the Vampires and Haemo this morning. Hemoglobin 8.8, Platelets 21, WBC 25 (much too high). So I've been booked in for a blood transfusion, but could not accept the appointment foir Monday, when Judith and I have a load of appointmernt in London, so its booked for Tuesday 6th April.
Anbother little problem I have is Bursitis inmyrighjt hip, which is very painful. In the past this has been dealt with by occasional injections, which are deep into the joint. This mornign The Haemo said NO! too much chance of bleeding from deep injections abd my platelets are far too low to make it sensible, so take painkillers. That will put my daily intake of tablets to over 20 per day.
Oral chemotherapy increased from 9 tablets per week to 11 per week, to try and get these WBC down.
Birdmom,
I don't quite understand, why do you not see a haemo every time you have a blood test, I do, and am presently on 3 weekly intervals. Must be some good in our National Health Service.!!! If you don't see the Haemo, what is the point of a blood test.?????
Regards to all,
Chris.

What kind of chemo are you on Chris with what mg.? It's not like I will even remotely know the difference in chemo though. So how do you feel when you need a transfusion? I feel fatigued, out of breath and have heart palpatations. I wonder if we all feel about the same when we are low. I don't have a problem with platelets or white counts yet so don't know how I will feel when that all starts. I don't know how you do it. You are such a busy man. When I get low, I just want to lay around. Bursitis is a real bother and does take such a long time to heal or get over. My hemo won't let me even get a flu shot so its understandable why they watch you so close.

Morning everyone

I had a very surprising, humbling and emotional day yesterday when I opened one of our National newspapers. I have been nominated for an award. I'm still not convinced I have done anything that anyone else in my position would have done but nice to get publicity for the campaign. Hopefully the link below will work or you won't have a clue what I am on about.

Ally

Ally

http://www.dailyrecord.co.uk/news/real-life/2010/03/25/daily-record-our-heroes-2010-firefighter-ally-doesn-t-let-lethal-disease-stop-him-helping-others-86908-22137579/

(((((((((((hugs ally))))))))))))
well done on your nomination!

Deb

Well done Ally, you've probably earned it, but I hope to get an award; the approval of others who write in to this coloumn for managing to get number 400. Gayle will of course turn green with envy.
Felt very tired last night, but thats a day with leg pain and the pain killers I am having to take.

Susan, I take an oral chemo. called Hydroxycarbamide, which comes in 500mg capsules, and now I am to take 2 one day, one the next.
The history is that I did not feel that I wanted to go onto cytarabine, which was 14 days on with two injections, morning and night, daily, floowed by 14 days off, for a period of 9 months. This drug only has a 15% chance of doing anything, and only 15% live to see the 9 months through. I made the decision at the end of July, and Hydroxycarbamide (also known as Hydroxyurea) which has been around for 6 years I think, seems to have kept me reasonably stable, for 8 months, so I am happy with it.

Feeling better this morning. Normally I do not realise that I need a blood transfusion, but last night I certainly thought I did, and it really is a matter of tiredness and generally feeling not 100%.

Love to all
Christopher.

Ally,
Congrats on your award!!! This always makes our day a little brighter.
Chris,
I know it's tough to concede that Ally might have deserved his award over your reward of being 400, but I think his might have been a little harder to obtain....:). Just kidding of course. It's good to hear you are feeling better today.
Jerry and I leave for Gulf Shores, Alabama, tomorrow with our daughter and three young grandkids. This will be a great time but also tiring at times. Her husband is going fishing and meeting us toward the end of the week and will drive her back home. Jerry and I will continue our journey to Texas for my doctor appt.
Hope to get your posts while we're gone.

I'm overwhelmed with all this news! Ally, the article about your nomination brought tears to my eyes. And we learned a little more about you, for example that you helped at the WTC. Thank you for that!

One thing about having a fatal disease is that you think a lot harder about what's really important. As you said, under normal circumstances, you might have been a workaholic & not truly appreciated your little daughter.

Chris, I don't know how you managed to get 400. I'm green with envy, too. Sounds like life for you these days is getting a little tougher, up-down-all-around. But you're tough, too.

Susan, have a wonderful time on your trip, and enjoy the grandkids. I'm green with envy about them as well.

Ally
Well done on your nomination, you really deserve it. Your effort to make others aware of the bone marrow register is impressive and so important.

Chris
I really wanted number 400. See what happens when you go on a short break.

I had a tough week away, my brother has weeks to live and my family are having a tough time with all the emotions that come with this awful situation. It took all I had to manage my feelings of distress and I think (dear I say it) but fear of what cancer does to the body. The amazing thing was my brothers spirit still shone through those hollow eyes. Even if the doctors say its all too late, his spirit hasnt given up.

On top of all the sadness I planned to see as much family as possible in a week and decided to take my nieces and nephew out to dinner. After dinner I drove back through this new tunnel in Brisbane and about two minutes after leaving the tunnel I had to pull to the side of the road as I had I terrible stomach pain and nausea. I got out of the car and collapsed. I woke to find myself in an ambulance and being taken to hospital. The final diagnosis was food poisoning. How stupid can one be, but my specialist did warn me with my white count that infections can be dangerous. It was the speed at which it occurred that worries me. Deb would be aware how lucky I was not too have stopped in that brand new tunnel. I may have made the news ...... so glad that didnt happen.

My last reply I spoke about paragliding......I actually meant hand gliding.....I was having a silly moment.

Im so glad to be home.

Rachael

Ally,
Congratulations, and I will now write in to support your nomination, as I hope all others will.
There are only 700 MDS sufferers in the UK, and few of these will be young enough to be able to accept a bone marrow transplant; I was told that at my age it could kill me. But MDS needs to be publicised as widely as possible, for it is something that few people know about, and when people heard that I had contracted it, they could not believe that anything at all was wrong with me, for despite the Haemologists concerns, I still look quite well and very normal.

Please all who read this, go back to the link Ally gave us, for it requires that we vote, so vote we must, to help Ally in his task, and help to secure his future, when he is deemed ready for a BONE Marrow Transfusion.
Feeling very tired, my blood transfusion is obviously required.
Chris.

good evening everyone.

Firstly thanks for your congratulations and support. The campaign was never about me but I was very proud to be nominated and the publicity for the campaign is excellent.

Chris well done on 400 and on remaining positive even though you are clearly feeling below par to say the least. Stay strong my friend because I want to be competing with you for 1000 and beyond! Rest up as much as you can till your transfusion (the vampires pay back!)

Rachael my goodness what a time you are having my thoughts are with you and your family and I hope that the fighting spirit continues to prevail for as long as possible. They say everything happens for a reason but I really can't understand whay any family has to be put to the test like yours has.

Stay strong everyone lets hope for better times ahead.

Ally