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Day + 67

by moira603 @ Sunday, Jun. 25, 2006 - 07:47:28 pm

ok so here I am and i know I haven't been talking or blogging but I hope you'll understand.
I managed to get the hospital to agree to let me out and come in on a a daily basis for my cmv treatment and so could retreat to claires whilst Russ was in Cairo. I was tired and the hot weather made it very uncomfortable but it's better than being in hospital. I had my hickman line put in a week past Friday, Claire was there as I went in and Jane waiting for me as they rolled me out and then tarty Sheila arrived so all in all I was ok, and after a week of searching for a veins and stabbings and heat packs it really was the best option. Russ got back on Monday and on Tuesday I had my day 56 biopsy. Results on Thursday for both CMV and Bone marrow were not good with the marrow obviously being the most devastating.
I don't really know what to tell you guys, I can do nothing but carry on. So tomorrow I head back to the Guthrie ward for another treatment in the hope that that will kill the bastard and they have also stopped my anti rejection drugs in the hope that that will induce some graft versus host disease. So it seems like I have to get very sick again in the hope that I can beat this. Not a prospect I relish but if it works. All the time of course the drugs are taking their toll on my body, as you can imagine. So not brilliant news guys and the reason it takes me time to blog is because I feel like it's all so depressing and I didn't want it to be like this.

The boys have been here this weekend, Ross has been back since Wednesday having finished his exams and the other two finish this week and Russ will go and pick them up - so it will be full house! Both Ell and Ross are then heading off to Cairo for one last fling and Russ will head out on 8th to finally pack the house up and say his final farewells. I will be god knows where !!! There seems to be little point in planning as i've no idea what's coming and ideally it would be a good sign if I was sick and the donors cells were attacking mine particularly the bad ones.

So everything keeps turning, each morning, each minute I try to see the good things - hard sometimes - but not impossible. I've been reading
"you can't afford the luxury of a negative thought" which helps me stay positive and in the moment. I wish that there weren't houses to buy and sell, countries to move and that I was living nearer my friends and family, it would take the pressure off, but it just is the way and I can't change it. Russ and I just go on. Your support has lifted us through so many dark times and I know it will do the same again, even as the odds get shorter my heart gets bigger and my determination stronger. I could be that 5 % couldn't I ?

Bah humbug - I need to end on a lighter note
Beckhams free kick ? no.
My toe nails - trimmed ? no.
Oscar wilde - Yes

Over the piano was printed a notice :
Please do not shoot the pianist. He is doing his best.

And that's all you can ever do.........

LOVE YOU LOTS
M



 
 

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Jane Stone [Visitor]

25/06/06 @ 21:52

Hi Moira,

Leukeamia certainly does suck & it's OK to shout from the rooftops that your're getting a damn raw deal!!

It must be really hard to keep positive in the light of this news but try and keep going it's your fighting spirit that has got you this far. Good that the boys are soon all home to be with you, it will give you I am sure it will give you strength.

I don't know if it's worth a try and you would need to talk to your medics but if you can swallow pills (little capsules) and they OK it. Aloeride may be worth a try to boost your immune system - it is Aloe Vera with the Aloin taken out (the laxative bit). www.aloeride.com As far as I can tell it does no harm and since I started taking it my radiation colitis has improved as well as my energy.

I will pray you can really beat those bad cells up - hey no space invaders allowed in your blood & bone marrow!! Send a little crunchy guy to gobble them up - Ok I haven't lost the plot you are probably too young to remember the space invader arcade game.

Love & Best Wishes to you all

Jane

GoingSomewhereGoingSomewhere [Member]
25/06/06 @ 21:53

I'm sorry things have been, and still are so tough for you. I can only hope that they improve. Glad to see you're determined to be positive. My very best wishes to you, GS.

O [Visitor]

25/06/06 @ 22:20

Moira,

This is tough to hear but you have been so strong, your courage is outstanding. We pray that you are going to be in the growing number of gifted people that shows this disease can be beaten. What ever it takes - sign up for that 5% club and take it to 6.

With the love of Russel and the boys you have a tremendous amount of support pulling you through. We are all fighting for you.

All our love and prayers

O

liz Mclaren [Visitor]

26/06/06 @ 01:22

I found it so hard to read todays entry. You have been through so much crap this year and know how close it was.
It's another bad and bleak time ahead I know.
We are with you and praying and willing you better. I gave blood in Edinburgh when I was back. I wish I could do more.
chin up chest out
Liz xx

jill [Visitor]

26/06/06 @ 06:48

Of course you are the 5% Moira and don't you ever think otherwise! You are not going to give up now - you have come so far and there's oodles of people out there routing for you on a daily basis. 5 has always been a great number for you and it always will be.
I wish we could talk again but I am going to leave you for a few days to build up your strength and rest and get ready to fight again.
All my love
JIll

egyptjaniceegyptjanice [Member]
26/06/06 @ 06:58

Dear Moira,

Sitting here trying to decide what to write...everything does seem so unfair. I'm sure you are tired of people telling you to stay strong and positive and that you can beat this but you must keep trying. If only there was something that we could do to make it easier for you.

Dave is in Dubai this week and Chloe and Sam are on their final week of school. This has seemed like an incredibly long term and we are all looking forward to the break. We have decided to start the summer in Alaska. It will be nice to see the mountains, breathe clean air, hike, visit friends and do a fly in trip. Sam is so keen to see a moose--should be an easy wish to accomodate. After that it's off to Wisconsin to visit my family and more friends.

We are all thinking of you and will continue to send our love and best wishes to all of you. J xx

Juli [Visitor]

26/06/06 @ 07:49

Moira,

My heart is full of love and pain reading your blog. 5%??!! even if it were 1% I would still believe in you. You have so much life force and strength in you, I know you will keep going and fighting. In my mind's eye I see you twirling your sword and leaping from one place to the next dodging the bullets and attacks and all the time leaving no doubt, that you may be human but on the inside you are invincable!
Sending you, as always, all our love and positive vibes to help you through.
Jux

Andrew Faulkner [Visitor]

26/06/06 @ 14:05

Hey there Moira, Sitting here in Singapore thinking on how priviledged I am to know someone who is so brave. Brave is not facing lions or crocodiles. Brave is facing those inner demons. The ones who tell us to give up. But you, Mrs 5%, are brave! You who writes so eloquently and brightly at the toughest of times. You who tell jokes and talks of others. You are my definition of brave. So you just keep on fighting and believing! And be assured that we are all right behind and beside you...all the way.
Lots of love
Andrew

Ali McLewin [Visitor]

26/06/06 @ 15:03

Dear Moira
Against all the odds you have more life and spirit in you that most people have in their little finger. You WILL be in the 5% because 5 will be your magic number. Am thinking of you daily and am sending all the positive vibes in the world. With love and the bestest of all wishes.

Ali Mc xxxxxxxxxxxxxxxxxxxxxxx

Lisa Rolle [Visitor]

26/06/06 @ 15:36

Hi Moira,

that CMV sure is giving you a hard time. Russell is so positive that from his time in Cairo I thought things were going swimmingly (relatively speaking)...it's good really that he's so upbeat because you need that by your side. So I am going to try and be as positive as Russell and give you as many good vibes as I can from Cairo to get you through this tough time.
We miss you so much and wish we could be closer to you too....no postings to London at this point! We are coming out in October though so we'll get to give you a huge personal hug then.

Keep up that fighting spirit, we're stiil fighting from this end!
Love Lisa

rosywoodrosywood [Member]
26/06/06 @ 19:20

Dearest Mo,

B*st*rd disease.

I wish I could just put out my hand and grab all the badness and pull it right out of you...(like some baddie in Indiana Jones)...
Unfortunately I don't have such super-powers...
But I know you do...
So Mrs 5% hang on in there...
You can, you must, you will come out smiling...

Big love to you and your gorgeous boys...

R

RegosRegos [Member]
26/06/06 @ 19:22

Our dearest Moira
How hard it must be for you to tell us such news and for us to read it - but we want you to know we believe in you and truly trust that you are in that 5%. Each hurdle seems an incredible mountain to scale but our ropes are with you -willing to help haul you over the next peak.

Having the boys around you soon will help I am sure. Keep fighting, don't be scared - you are the hero in this story and you will win the battle. How much hope, energy and spirit can we four send you in just one word? I'll tell you - an infinite amount - and the word is LOVE
As always sending it to you , Mike, Sarah Angharad and Tegan xxx

celeste [Visitor]

26/06/06 @ 20:12

Moira:

It is just like you to be worried about us--your devoted friends and fan club! Not wanting to give US bad news. You always want to make it better for everyone, and I (we) all wish we could do more to make it better for you. I don't believe in percentages--I believe in you!

Love,

Celeste

Brenda [Visitor]

26/06/06 @ 21:53

Hi Moira,

I sense your dismay and you're allowed to have a mega moan at times like this-you who are always so cheerful!! Just think of Russell and the boys being near you over the sultry summer days in London, giving you all their love & encouragement. As always, thinking of you, my brave friend!

Love Brenda

aineriversainerivers [Member]
26/06/06 @ 23:02

Hi Moira

What a sh*t but stuff the percentages they are just numbers - we are talking about YOU and you can beat it! Lit another candle for you on at Sunday mass - I do trully believe you are going to get through this - it might take a while but why can't you be one of the ones that comes out the other side. Hang on in there wonder-woman.

Have survived 2 parties at our house this weekend - the challenge of have 3 out of 4 kids birthdays in June. Clare has escaped for a couple of weeks with some Uni pals so missing her already having just got used to having her around - even with her dropping items of clothes in just about every room in the house!

Hugs from Aine & Co.

Fiona G [Visitor]

27/06/06 @ 10:28

Moira,

Rotten news but we are still there with you and your wonderful family and supporting friends. You, with a little help from all of us whenever you need, are tough and stubborn. So thumb your nose at each and every baddie in your body and hear the cheer from us all. Jack Johnson, The Eagles...... they are there getting you through the day too.

School holidays coming up. Neil is off next week to Alaska to stay with Nathan and David (the lads over here with us last summer). Didn't mention the kayaking/camping with the bears to the insurance. Meanwhile the rest of us will be to-ing and fro-ing from the west coast, hoping for not too many midges.

Thinking of you - be tough and hug each other lots.

love and hugs from us,
Fiona et al.

Megan [Visitor]
http://meganmac
27/06/06 @ 13:33

Hi Moira,

Just stopping by with a few words of encouragement for you.
Beth Cowie and I managed to finish the Edinburgh Moonwalk on Saturday night. It was 26.2 miles of hard-going but wanted you to know that in the wee small hours of the morning, when we were both exhausted and aching we happened to stumble by a street sign....Moira Crescent. We looked at each other,thought of how hard you were struggling and you inspired is to lift our feet and carry on with renewed energy and determination. You carried us through and we all want to do the same for you. We are right with you...keep on fighting.
Love

Megan

joss [Visitor]

27/06/06 @ 14:15

Hi Moira,

Just after Megan finished the moon walk, I and 4999 others ran the Race For Life in Aberdeen. I carried your name on my back with pride, and thoughts of you kept me running to the finish.
You keep fighting too.
Lots of love, Joss M

Judy Garrett [Visitor]

27/06/06 @ 16:07

Dear Moira

Just look at the effect you have on people - you have got Megan walking 26 odd miles and Joss running for miles and others too. Unfortunately you haven't managed to galvanise me into physical action yet.....but in other ways.

You have touched us so deeply, may we touch your core of being and add to your inner strength.

Thinking of you all the time with much love. Judy

rosywoodrosywood [Member]
27/06/06 @ 19:49

Hey Mo
By now I guess you're safely tucked up in Guthrie getting the help you need to combat the gremlins who persist in your system...without getting sick again ...
Football dominates the house…at least 4 hour a day of aimless kicking balls about and another 20 hours of chat…aggghh…at least you can escape that in Guthrie!
You are never far from my thoughts ...
Neither is Ben, who should be high up in the foothills of the Himalayas by now...
Hope you escape to your sunny balcony soon.
Monster love
R & T

feilrlfeilrl [Member]
27/06/06 @ 21:32

Moira
have been thinking of you alot. Good to hear Russell will be back from cairo soon, it must be so hard with him having to leave the country so much. You know we are here in sunny tickenham if we can help at all...Hope the news gets better, stay positive. we send much love and best vibes to you, mary-anne and richard. xxxx

fee [Visitor]

28/06/06 @ 07:57

My darling Mo, as I sit here so very far away from you I feel, like you must, so totally helpless. I so much want to do something to help you through this horrible time. I hug you endlessly in my mind and am willing those good cells to end the disease. Nothing I can say can convey the way I feel right now, I just want you to know I am with you, and am sure that knowing the strength you have, you will be that 5%. I love you very much Mo and wish it was just a 5min journey to hold your hand, but believe me, I am every day. Will call soon , all my love Fi xxxxxxxxx

liz Mclaren [Visitor]

28/06/06 @ 10:32

It's 5am and it is a calm and lovely morning. Yesterday when I was cleaning the pool I saw a hummingbird flash by. I counted 5 in the garden. The dragonflies were skimming the water....
5 is a perfect number it's the petals on a flower the fingers on a hand BUT it is only a number after all. When you are that percentage point it becomes a whole number...whole numbers mean whole people. Never thought of you as being anything less than whole.
Fight on,
Im drinking Dragon Ball tea....hope you have some left to share with me. (I will send you more just in case) We all need some Dragon Balls
Love
Liz

Emma Drasar [Visitor]

28/06/06 @ 12:22

Dear Moira and Russ,
What a total bu**ger quite frankly. I don't know what to say but I know we can pull something out of the bag. If anyone can do it you can - have let Ihab know, he sends you love and best wishes too. Will see you when I start at Kings - if sheer determination means anything (and I know it does!)then you WILL be the 5%.

Take care
Lots of love
Emma

carrytaylor [Visitor]
http://carry49.blog.co.uk
28/06/06 @ 17:47

Blooming buccan thing that you have got there, I have just sent you a card with huge amounts of love in it. It will be winging its way to Cinnamon Wharf and as soon as you open the envelope, out it will pour. I am going to the book club this evening to give Joss her sponsor money, we have all got your name on our backs. I will write again tomorrow as soon as I get back from school. You are tougher than anything I have ever come across, be it my cooking or old boots - love and kisses Carry.

Aloe Vera Pills [Visitor]
http://www.aloe-vera-pills.com
11/03/08 @ 10:51

im sorry to hear and i hope things get better for you

Aloe Vera Pills

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