Thursday, October 16, 2014

Unconditional Love

“When enforcing our boundaries, first and foremost, we are caring for ourselves, but we are also helping others to have a clear understanding of what we consider acceptable behavior. We are reflecting back to them what is not acceptable and, therefore, providing them an opportunity to consider that information and make necessary changes.” 
― Donna Wood from The Inspired Caregiver Book

Wednesday, October 8, 2014

Prescription for a small firendship with me:

Prescription for a small firendship with me: 
All it takes is to sit beside me, listen. let me fall asleep on your shoulder
understand that what is in me to express is real. it's not a figment of imagination, or a malignant tumour,
just thoughts, feelings, that live in my heart, need to get out, that belong to me, have dignity.
Do not question my intentions or ethics, they are pure, impeccable, take it as a given.
don't tell me what to do with my feelings, how to act, dont give me advice, thats not kind, that is controlling and its in your interests.

if you care about me, give me what i need, silence, a smile, care, love, the right to be and grow and cry and dream at will. for 15 mins. come on the journey with me, marvel at the sights from my point of view. its not alot to ask. when i wake up after in confusion bring me coffee, share stories, laugh. Akley Olton x

Thursday, February 3, 2011

Chemo update

Dear friends

Just to let you know how it is going....

I have been on chemo-therapy for 7 months, since beginning of July.

At the time, the tumor in my gut had grown to the point that it was aiming to choke my alimentary canal again, and also had a potentially fatal grip on the veins coming down from my heart.

The medication I was using, an oral drug called Tamoxiphen, was not working.

After a fun week at St Mike's with all my old freinds - Drs Kortan, Grantcherov et al - I started on intravenous Methotrexate and Vinblastine, weekly, three weeks on, one week off.

By the end of September the tumor had shrunk by a third, to the delight of my Oncologist.

"Rarely has anyone reacted like this to my protocol!' he said. I congratulated him.

He indicated that the accomplishment was actually mine. I blushed and said "Thank you".

He suggested he might take me off chemo after 6 months if the shrinkage continued at the same pace....

Chemo ward - the guy on the left is getting read the riot act... on the left madam catches up with some reading.
As time went on I found the treatment harder to handle. At the beginning it was exhausting, now it wipes me out. I have a range of annoying side-effects. The worst is not being able to finish thoughts, or complete actions without my mind going blank. That and being sick all the time really cuts down on what I can do with my time.... like make films etc, which face it, is trench warfare, you have to be in tip top shape, mentally and physically.

Last week I had my second scan. My Onc anticipating miracles set up a special screening so we could look at the pictures together. Dissapointingly, we both had difficulty reading the strange diagrams. No matter how we interpreted them, no miracle seemed evident. The tumor was still there.

I decided to wait for the radiologists report and today I got that. No surprises. The tumor continues to shrink, with some complications now caused by the shrinkage. Chemo will continue.We give thanks for life ongoing.

Love you all,

Saturday, July 24, 2010


Wednesday, July 14, 2010

Chemo 1

Dear Friends,

first of all thank you, for all your good wishes.

What a miracle is the internet that we can connect so easily

When I was a child I didn't have this.... Anyone my age can tell you of the emotional isolation that this technology has pretty well cured. I am so grateful for it.

Leonie came with me to my first visit, and I definately recommend carrying a friend along, as it takes the edge off the whole boring procedure (that otherwise will prey on your mind) if only because you have to extend your imagination to keep your good friend amused.

Half way through the session, hooked up to the cocktail, Lee and I began planning our new show

It stars Leonie as an errant intransigent bad-mind old lady (remind me of my granny in her last days - stubborn, outrageous and own-way) stuck in a hospital in Toronto, with Valerie Vuhagiar as her rather drunken Nurse, and Michael Miller as her unsympathetic son. Being in the hospital environment certainly helped us to imagine all the fun scenarios that can develop between these 3 wonderful characters. So we were cracking up together, and the time passed quickly.

Standing outside the hospital waiting for my mother to pick us up after Lee said: "Listen here Frances-Anne, this could really be hilarious, I'm sure CPTC will help us with equipment and I know one or two camera men in Jamaica who want to work with me..."

I sure hope I get to work on all these wonderful projects that I am cooking up these last months.

Collaborating with friends takes on new depth and meaning in this life phase. I have always sought to work and work again with kindred spirits, soul mates. Now it is essential to simplify relationships, refine the creative process. I need not to be THE driving force. I need to have fun all the time.

And together we will circumnavigate new hurdles : chemo brain, hospital visits.

It all seems posible from here.

Love, more love

Saturday, July 10, 2010

Coming Home

Dear all,

When I left Barbados about a month ago, I thought I was only coming to Toronto for a few days so brought nothing with me. I was feeling ill and did not pack.  But somehow as soon as I landed here, I knew that it would be for awhile. Now part of my struggle is not having any clothes to wear ... This is not a bad thing. Life gets simple when you only have one pair of jeans and a couple of tops, and have to resort to dresses discarded and left here last year...

It has been suggested  that I write about my ongoing health challenges.  It is overwhelming and maybe a way to laugh about it will be to share it with you as I go along ....  The last time I was in the hospital 2 years ago, left me with a vein of rich and tragi-comic stories that I am still keen to share. They have everyone in stitches the second I start talking...

Now, I am starting chemo-therapy on Tuesday so we will see how much fun that will be.

The tumor is growing and the Tamoxifen I have been taking for 2 years is not working. Last Tuesday I went to see "Dr Congeniality" my oncologist. So named for his non-existent bedside manner. My mother came along just in case he decided to close the door behind him so he could tell me how important he is all over again. That's what he did the last time.  This time my mother sat there like a tape recorder, while he empathetically touched my hand, called me "Dear" and told me chemo would be gentle, manageable, and I would lose no hair.  He even suggested that I google the protocol. (Last time I mentioned the internet to him, he was mortified that I would take the advice of the INTERNET over his world-renowned knowledge....

As soon as I got home I wrote to my email support group (of desmoid people who have this disease):
I am about to start chemo methoxetrate/vinerolbine intravenous. ... would appreciate any advice, input re side effects/ etc. thank you in advance
Within half an hour I got the following response:
Frances- I had a year of Methotrexate/Vinblastine for my desmoid under my right arm. I chose not to get a port and had to get an IV every time. They gave me various meds for nausea, which I took every time, but it always helped to nibble on graham crackers during infusion. The smell really got to me. I was nauseous for a couple days after and I was worn out. I had no energy for almost a week after. As soon as I started to get back to my "normal" self, it was time for the next round. My hair thinned, my fingernails peeled and cracked. I lost about 20 lbs. After all that, I got no shrinkage. But, my tumor did not grow.   
O brave new day.

For those who would like to know: a port is a hole they will put in my chest so they can feed the chemo straight into my heart instead of destroying my veins. 

Love, FA

Monday, September 7, 2009

I had an Epiphany

It was a perfect Sunday morning. I don't know why life tastes, smells, looks so sweet after a few days spent cloistered with work. (Through which the dark thoughts swarm, you know them well by now).

But on this perfect Sunday morning, deeply rested from a long night's sleep, the new day ahead looked exquisite.
I was explaining to my friend Jean why technology has never scared me. I have been willing to go through days/weeks/months of frustration and hoplessness just to achieve that moment when you wake the next day and its use has become second nature. That has always been my relationship with technology, ever since computers appeared to challenge us in the early 90's.

Unlike for example my relationship with Music. Months/years/decades spent learning the piano, the guitar, the recorder: nothing stuck. I am useless.

"That is because you realise technology is a means to an end."Jean said.

YES! I thought. And so is music, so is every other obstacle that presents itself!

"So what is the end" Jean said after we argued this back and forth.

The end is expression, and the relationship with an audience, the moment when one person gets it and says"Ah!"
Photo: Perfect Toronto morning, College St prepares for a late summer street festival; Toronto couple enjoying dogs and owners romping in Trinity Bellwoods Park.

PS: I write, I sew, I take pics, make flicks. I talk. I can even dance (true not recently tho). Look to see me start making music soon people