It has been a rough week here. You guess that the news is not good when your oncologist is in tears but it is worse that "not good". The cancer is terminal. That I have known for some 13 weeks now. Two years without any treatment, four years with chemotherapy.
Except that didn't work out the way it was planned.
It appears that the chemo has accelerated the cancer, rather than killing it, which is a bit of a bugger really. So now the prognosis is 6 months to a year.
I wanted to tell everyone myself by phone or by seeing them in person but it is really not possible. We have told the immediate family, a few very close, need-to-know-because-of-children-logistics friends and the darling bank manager, along with the intraweb family I work so closely with every day.
Yes, it sucks.
I am sure I will write more and pour my heart out over the next few weeks but, for now, I am just grateful to wake up in the morning. I am not looking back thinking about stuff that has already happened and is unchangeable. Nor am I looking beyond tomorrow. I am just living each moment as it comes.
(For the record, I just want to be quietly at home and have absolutely no desire to bungee jump or go on holiday or See Naples and Die.)
I am greatly relieved to be off all medication and shall stay that way for as long as I can. My brief brush with morphine showed me that I am not a happy-on-drugs bunny. As the cancer progresses, I am bound to need more fuzzy stuff and will probably be quite looney tunes. I am therefore "putting things in place" for the farm and will carry on with my advocacy work for as long as possible before the loopiness sets in.
The weird thing is that I don't feel sorry for myself at all and I am not enjoying my moment in the limelight. My sorrow is for HWISO and the girls. They are such bright big stars in my firmament and I hate to cause them any sort of pain. They don't deserve it. I am lucky to have good friends and family to step into my breach and help filling the gap but it doesn't change the fact that this a really buggering bugger, especially for them.
Two amusing moments: telling my big brother on the phone.
"I'm so glad Mum's not alive", I said
"Yes, because this would have killed her", he said.
Gales of gallow's humour laughter down the phone.
I am becoming physically weaker and unable to do the odd normal thing (although I can still cut my own toe nails - such a relief). HWISO and Em were out over Saturday lunchtime so I put on my new Du Barry's to walk the dogs. I then couldn't get them off. Saturday was hot and humid and my feet were overheating so I was contemplating standing in a bucket of iced water and kept trying to direct cool air down my boots. The dogs were expectantly eyeing me, thinking there might be a chance of another walk, as I still had my boots on. Trouble kept brining me his ball, running to the gate and looking at me with a mixture of anticipation and longing. It's SO annoying that dogs don't speak human and that I am no Dr Dolittle.
The terrible twosome returned to find me lying on the kitchen floor, proffering my feet to them, jabbering incomprehensibly about loving them SO much but would love them more if they could just take my boots off.
Last, but not least, there are few moments when you can get away with the darn right cheesy sentiment. This is one of them.
I love you, Charlotte. Just that.ReplyDelete
xxxx Nicki xxx
Amoma is crying a river. xoxoxo Devastated yet full of love for YOU.ReplyDelete
No words, just immense love across the pond.ReplyDelete
Darling Charlotte... I have no words; I really don't. I HAVE to come and see you... I love you too and I HATE that life is so unfair :( xxxReplyDelete
No, no , no, no is all I can mutter through my sobs here. And yet you still have your sense of humor and British stiff upper lip. How you manage to say, "Which is a bit of a bugger really." is beyond me.ReplyDelete
Sending you much love and light Charlotte.
Gentle soft hugs - Becky
I am so sorry for all your suffering. - Seminarlady/CathyReplyDelete
Char, just loving you so hard. Your spirit is the brightest possible light. I will always remember you. Tears are flowing in Illinois. <3 AnnieKReplyDelete
More love from the Northwest, Charlotte.ReplyDelete
I am raging angry at cancer, Charlotte, and fantasize chopping it up and boiling it in chili oil and feeding to the rats on the farm...isn't that what you did with ED?
Yup but my chillies had 2"l"s. Just sayingDelete
Oh Charlotte,for the first time in my life I am speechless! Lots of love to you xxReplyDelete
Charlotte - I am in a state of shock and sorrow. Tears and rage at how cruel this is. You have been my partner for so long - your tough and determined spirit kept me going and questioning.ReplyDelete
Now I question why this dreadful disease is taking you from family and friends. All I can do is send my love and hugs and hope that you can get through the days in peace and without too much pain. You are a very special woman who has touched so many lives. Your daughters will keep your memory and spirit alive as they continue to grow. Your H and dogs will keep your comforting words and hugs. You are in my prayers.
Love you, Wendy
Holding you in my thoughts, Charlotte.....ReplyDelete
Jennifer from Tucson
You don't know me but I am in recovery from anorexia and have been following your blog and the open forum of ATDT.ReplyDelete
Your attitude and outlook on life is inspiring and you do amazing things. I just wanted you to know that and I know I'm a randomer, but if I think like that then I'm certain the people who know you and love you have those feelings multiplied by millions. Sending lots of love to you and your family. <3 <3
Thank you. This means a lot.Delete
<3 I mean it. Take care of you and know you are an inspiration to many. =] xxxxxDelete
"Your Way" kicks ass, Charlotte.ReplyDelete
(I'm using up all my expletives lately. May need to buy them in bulk.)
You are a woman with so much courage and not afraid to put across your feelings and beliefs , you give people advise and help , you are a remarkable womanReplyDelete
sending you love and hugs to you and the family xx Margaret and Paul
So much love for you and all you do - RebeckaReplyDelete
So, so sorry to hear Charlotte-you have been an inspiration and still are to many-a beautiful ladyReplyDelete
So sorry, Charlotte. You have helped so many people on ADTD. Cancer sucks.ReplyDelete
Sending shiploads of love to you from downunder. I cannot imagine doing what you have had to do over the last week. You are truly an inspirational woman. Oh, and cancer is crap.ReplyDelete
Dear Charlotte, I am sending you love and prayers, from Aus. You have fort your battle with grace and dignity, now may the Lord of Grace hold your hand in your final journeyReplyDelete
Lisa from Aus
CHARLOTTE!!! This is devastating!!! You and I have been all philosophical and stuff, but there's no denying the sadness this brings. I love you, I'm indebted to you. I want your family and close friends to take good care of you because I'm too far away. Keep blogging, and tell it like it is - no sugar coating it. It wouldn't be you. Soft hugs, Lisa ConnReplyDelete
Well, this is completely shit. So much love to you Charlotte.ReplyDelete
darling Charlotte, I am so sorry. You are an amazing woman, and I have so much love and respect and admiration for you... Thinking of you so hard; holding you in my thoughts and in my heart.ReplyDelete
My heart goes out to you and your family - I'm so sorry. You have touched my life, and touched the lives of more people than I could ever count - from the other side of the world you have been a source of kindness and rationality for me. I hate cancer, and I'm deeply sad. Thank you for your honesty and for just being *you*. xxReplyDelete
I am back C. Why? I am not really ready to write tributes and all yet. I feel stuck. So i read more about Elizabeth Kubler-Ross and guess I am stuck in stage 2. Who knew they had a manual for this stuff too?ReplyDelete
Did you know C that Kubler-Ross also came out of the University of Chicago medical school? U of Chichago has it all over Harvard in my opinion.
I know in time I will be able to move into other stages and toward a profound calm acceptance and thankfulness for having known a person such as you.
Thank you for sharing a bit of your time with me from over the pond. I'll give the dogs here a hug from you. Fondly, KathleenReplyDelete
You don't know me, but I owe my life to the ATDT forum and the surrogate parents, you among them, I found there. It's presumptuous, I know, but in the depths of my illness I often pretended one of the ATDT moms was looking over my shoulder as I struggled to eat: What would Laura say, or Colleen, or Charlotte? The stories of recovery on the forum gave me hope. And the notion that I was suffering from an illness, that the disorder was in some way separate from "me," strengthened me against the judgment and misunderstanding of well-meaning doctors and friends. Charlotte, when you helped a desperate parent on the forum see that "my daughter refuses to eat" really meant "her illness is making her starve," it helped me understand that I wasn't in denial, I wasn't "doing this to myself" -- even as my own loving parents, who told me I was "self-absorbed" and needed to "take responsibility," just couldn't see that I was sick.
By reading the forum, I learned the importance of reaching a healthy weight, and what that healthy weight might be; I learned that my fears and my perceptions were skewed by my illness; and I learned how to push through my distress and, no matter what, to eat anyway. It hasn't ever been easy, and I continue to struggle. I wish I had better support in real life; I wish my own mother, whom I love dearly, were a bit more like you. But I am moving forward, I am recovering, and it's thanks to the forum -- and thanks to you, too.
Sending love to you and your family, Charlotte, and deepest gratitude for your selfless, brave, important work.
Now you've made me cryDelete
Sending lots of love and support to you and the family. Always, Pebbles, Stuart & Wilbo x x xReplyDelete
One of my dearest sisters has just sent me your blog and I'm so glad she has. Terribly sad to read yet thankful to understand a little of what you are going through. Clearly you have touched many people's lives and will continue to do so. You are a brave soul, Charlotte, and I am proud to have you as a cousin even though we rarely see each other. Just know I am thinking of you and sending much love. My heart goes out to your family. Be strong together. Elaine xReplyDelete
I'm yet another. I never posted but I learnt so much from you. I found you via ATDT and have read you blog since the day you first posted. The day I "met" Charlotte my daughter was dying while treatment providers pointed their fingers in various directions, my husband and I were heading for divorce and I though life was over as we knew it. She is now happy, healthy and off at university. We are all doing well and daily check your blog with interest. We were so saddened to hear of your news and would like you to know that you will be in our family's thoughts. Please know that even on the opposite side of the globe your legacy will always live on in the young people whose lives you have saved. Thank you for giving us our daughter back.ReplyDelete
Didn't have the courage to listen to the song when I first read this but I just listened to it. This is so true for you Charlotte. Thanks for sharing your journey with us. YES! You did it your way and you are still doing it your way! XOXOXOXO to you! AxaReplyDelete
I've carried you in my head and heart this week, knowing I needed to comment on here and putting it off because the right words never seemed to come. So, these may not be the "right" words, but they come from my heart.ReplyDelete
I'm another who you don't know in real life, but you have touched my life with your compassion, dedication and fabulous wit and wisdom. I followed your journey on ATDT and was awed. Just, WOW. Not only did you save your daughter's life, but the lives, hopes and dreams of others. Besides that, you did it all with that cracking sense of humour. Loving that humour :)
When you agreed to be my friend on FB I felt like I had just befriended royalty! "Charlotte?" "ATDT Charlotte?": W-OW! So now I follow you on FB (hmm..am sounding a bit stalker-ish...in a good way though, promise!) and the FB F.E.A.S.T page where your presence is a guiding light: a beacon of hope for all of us. Whether struggling with our own personal battles with ed or struggling to help a loved one with ed, you are there, lighting up the battlefield.
Thank you for throwing light on the shadow cast by ed and working so hard to show the world the reality that you fought hard to find during your own battles.
Thank you for giving me hope.
Sinatra made me cry! But, what a perfect song. I really like your way.
Holding you and your family in my thoughts. Wishing you precious time to spend loving each other.
Charlotte you have a place in our hearts forever. Although we never met in person, from the other side of the world you managed to carry us in some of our darkest hours. We are sending love and strength from Australia to you and your beautiful family.ReplyDelete
Robyn, Peter and Claire xxxxx
Charlotte, this has made me so sad. I am not a member of ATDT, but as a sufferer I have found it to be so helpful in battling this disease and getting the correct treatment. Thanks to the ATDT community, I have found effective treatment and more or less recovered, and your blog was of immense help when it came to getting my mother and family on my side. Your posts and attitude have been so inspirational and it pains me to hear that world will be deprived of such a bold, passionate and caring soul. Thank you for all of the advocacy you have done, you have helped so many people. Love to your and your family at this difficult time. xxReplyDelete
I haven't been active on the F.E.A.S.T. forum for a long time, but always looked to your posts for strength when I was fighting to keep my daughter from dying of anorexia. She is now a senior in college and doing well all around.ReplyDelete
The only words I have are "thank you." Now and always.