In the Meantime
The diagnosis of
lymphedema was just the newest of my problems.
I had extremely tender feet, the result of chemotherapy induced nerve
damage. I had fatigue. I had fears of the cancer returning. I had difficult relationships and emotional
problems, and I had losses and disappointments.
Now I had lymphedema. To top it
all off and to be the straw that broke the camel’s back. Shit.
I quickly found
out that basically I was on my own. I
took my swollen arm to the Dr. twice. He
prescribed a diuretic on my second visit because the first appointment we
discussed if the swelling might not be the result of an insect bite. I realize now that I knew that this was
lymphedema but I was fighting that knowledge, I was hoping against hope that I
would be mistaken.
I remember
during the second appointment, when the doctor asked me why I was so
upset. Then he asked me, “Why are you so
concerned about the possibility of lymphedema?”
This was my
first clue that lymphedema is a misunderstood condition. It certainly was not in his radar. I didn’t expect that the medical system that
had served me so well during my cancer treatments would be such a poor resource
with lymphedema.
By the time a
month went by, the swelling had travelled from my arm into my hand. My fingers looked like fat little sausages. I was in significant pain.
I knew that my
cancer hospital had a physio department and that they helped patients with
lymphedema. I phoned them. They told me that I couldn’t just come up and
get help; first I needed a referral. I
didn’t book another appointment with my local doctor; I simply phoned in and
told his nurse that he was to send the necessary referral. To his credit, he did. Then I contacted the physio department again
and luckily I caught an appointment within the week. Someone had cancelled, or it would have been
three weeks. I shudder to think of what
might have happened in three weeks.
Later someone
pointed out to me that it is too bad that I didn’t get the help I needed before
my hand was involved. Too true. That delay cost me dearly, but I realize that
my own reluctance to face lymphedema played a role. A person can’t look back, and I did as best
as I could at the time. I didn’t know
how strong I really was.
The words haunt
me still. Right on the top of the page
it said ‘Do not knit’. It pains my heart
to this day to remember how that felt when I read this advice concerning
lymphedema management. I had become
enthralled with the ancient art. I was
passionate about yarns. I devoured books
about knitting; I dreamt of knitting projects and my needles were always
clicking. I was devastated. Simply crushed. You might think I’m being extreme here, but
it was like I had been parted from my love.
I couldn’t knit.
Knitting was
considered the worst of the small movement, fine motor skill, lymphedema
aggravating activities. Then I learnt
that most of my list of favorite activities matched the list of things I should
not do.
I didn’t argue
with the instructions. My hand and arm
were in severe and constant pain and I knew I couldn’t live like this. I was right when I thought lymphedema is a
life changer in the way that the cancer wasn’t.
I grieved
knitting. I resented my knitting friends.
It wasn’t fair. Those people who knew I
was a knitter would ask after my activities with yarn and were surprised to see
me tear up.
I have
lymphedema. I would say and then I have
to explain. I didn’t have the
words. My friends didn’t understand but
I couldn’t explain further. I felt alone
and sorry for myself. I suffered through
my days struggling to fill my empty hours, time that I would have spent
knitting. Then I would retire frustrated
and sad. Occasionally I would have
lovely dreams where the soft lovely yarn knit into beautiful garments. I’d wake up crying.
I had to give up
knitting but what was also evident that I had to give up thinking about
knitting. I packed up all that I owned
that related to knitting. I stopped
haunting those sections of the library and the book stores, despite how
unconscious my feet might lead me. I had to stop. I learnt to avert my eyes from knitted
garments, lest my hands fondle the textures, lest my interest lead me to
question the owners if they had knit the item themselves. I grieved some more.
When life hands
you lemons…and it will. Challenges come
up all the time, for everyone. Have you
noticed that some people rise quickly to face their challenges while others are
sunk by every single little thing? I’ve
been in both boats and I’ve learnt some things while I was there.
The absence of
choice is part of the struggle to meet a new challenge. To realize that life has dropped another
lemon in your lap is never met with ‘Oh goodie, I can make lemonade!’ Eventually the challenge has to be accepted
and met.
I may not have
chosen my restrictions concerning my lymphedema, but I’ve traded hobby work as
my main creative outlet to a focus on writing.
I grieved my losses, especially the knitting, but with that behind me, I
have come realize my restrictions have given me an element of freedom. Yarns are no longer an irresistible temptation
and the knitted projects are not waiting for my spare moments.
I am free of
that and that is a huge advantage. I
have that time and energy to write and I love it. I’m grateful now that my limitations
empowered me to choose this version of lemonade.
“I learned to talk to myself with compassion, with
courage, and as time passed, with confidence.”
Take Hope
I cannot skip around
the fact that lymphedema is serious and the adjustments can be huge. But while I am serious, I do not want to be
grim. Lymphedema is life-changing but
not life-ending.
My lymphedema
journey is and continues to be a challenge, but I am healthier now and more
adjusted than any other time in my life.
I believe lymphedema gave me the wake-up call. Good can come out of some pretty tough
situations and I have proven that to myself.
Sensing the possibility of good gave me hope. I took that hope and I held on to it. Do the same.
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