Bravery in the Face of Fear - chapter title What Happens Next - 05th April 2012
What
Happens Next
What happens next - When doctors, nurses, friends and family
have stopped hovering around you, taking care of your daily
needs to help your recovery?
You're told with such repetition and conviction that 'you will
get better - you will make a full recovery', you become
brainwashed into believing it. You believe it to a point
where you have absolutely no doubt in your own mind you will
make a full recovery.
But
Do you think about how long that recovery will take?
Do you think about further post chemo affects?
Do you fully understand what has happened to you over those 11
months?
Do you understand fully about the nature of the pain you still
experience?
Do you fully comprehend the mental and emotional affect this
short year has had on you?
I think perhaps not immediately.
With continued pain throughout your body managed quite
successfully with painkillers you (naively as it turns
out) try to return to a normal lifestyle with a view to
returning to full time working.
Trouble is, the normality that was can no longer exist.
As each day draws to its close you ignore the growing
discomfort and stiffness of the joints along with the increased
pain by repeating to yourself over and over the mantra that has
been drummed into you, 'I am getting better. I am making
a full recovery...'
This continues day after day, week after week. You
struggle more with household chores of washing up dishes,
ironing, hoovering and continue to ignore the increasing pain
and discomfort.
Your
hands begin to seize and knuckles no longer work as they
should. Your
ankles feel like knives are being driven into them and yet, you
ignore it all and push yourself through each day believing it
will eventually improve.
Until, your spine also begins to shout at you. This time,
forcing yourself to rise from your bed in the morning, pain so
bad that it draws tears from your eyes and you make your
way down stairs to the living room where you finally sit and
weep.
How sad the situation, when it takes a message of pain
from your back to finally make you stop and listen to what
your body has been trying to tell you for so long.
The message to STOP!
You finally fall into a pit of despair and loneliness realizing
that none around you could possibly understand or comprehend
what's happening to you.
The people in the outside world are the outsiders now. To
them you look fine. Your hair has grown back, your skin
has colour, to everyone around you - you look
normal. Therefore they conclude, you are now back
to normal and everything can go on as it did before
you were ill.
But for you, the word/term normal no longer means what it used
to. The world is different. Your body
is different. YOU are different.
The courageous facade you portray every day to the
outsiders becomes impossible to keep up. They don't
understand and fail to see the truth that hides behind the
smile.
And so you do the only thing you can do...... You
STOP!
----------
Accepting one's own disabilities, temporary, long term or
permanent is a tough pill to swallow. From the beginning,
the pain never really went away but I'd always
believed eventually it would go. From my neck,
shoulders, spine, elbows, wrists fingers, hips, knees to
my ankles and toes the nature of the pain had
changed.
I've never felt lonely before, but realizing my predicament
made me feel lonelier than ever. Not lonely for
companionship but a desparate need for someone to speak
to who would understand. I knew at this point that
outsiders were incapable of understanding how the after-effects
of the chemotherapy has affected me.
Plus there was no more safety net of Y Bwthyn as I'd
had to sign off their books when I'd attempted to return to
work.
I felt at this point I had no one to turn to who
knew what was happening and would be able to help.
Finally accepting that I needed to search for
help I threw a message to
Spirit/God/Cosmos/Universal Energies for direction.
I found 'Rowan Tree Cancer Care' at Mountain Ash and
explaining my situation was registered for counseling
sessions. These helped more than I ever would have
imagined.
Alongside my visits to Rowan Tree I found a
Healer/Therapist by the name of Keith Jones in Barry who has
helped from healing energy work to correct advice on
nutrition etc.
Progress is tediously slow, but it is forward progress
nonetheless.
So. Here I sit in front of my laptop once again writing
up a chapter for my Bravery in the Face of Fear feeling
quite settled and calm and no longer worrying (well not at this
point in time anyway) about anything.
I'm now praying for new direction and just sitting back and
chilling-out.
I know my prime objective is to get well and I can only do that
at my own pace at home.
TO
CONCLUDE
It is difficult, more so when you feel the safety nets of
support and help are removed. The
intensive treatment, care and attention you are shown
during the early stages of your illness suddenly no
longer exist as those who were so attentive to you now move on
to help someone else.
Organizations like TENOVUS and ROWAN
TREE are so very important to help people through the
trying times that follow.
When in most people's eyes the scare of cancer is now over they
feel they can sit back and let the person in
recovery continue with life as they did before it all
began.
It's not as easy as they think for most of us.
I'm reminded every day, almost every hour of what
I've been through by my constant
pain.
When my head is no longer in my joints and bones, when I walk
my feet are no longer hyper sensitive with the sensation of no
shock absorbers at my ankles - then I'll know I'm fully
recovered.
Until then I'm learning to be kind to me.
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13 Comments
Being kind to yourself is extremely important and it is good that you discovered Rowan Tree; were offered counselling and also found the healer/therapist, who is helping you in your gradual recovery.
Sending gentle hugs and very best wishes. Jill xxxx
Nothing can ever be as was before the illness. The pains and twitches you get now will arouse suspicions in you which you naively ignored before.
New limits are established and eventually these become the new 'normal'.
Good days and bad.
I have not had your battle as such but I admire your determination and clarity.
Good blog.
Best,
Prop
So you just keep on keeping on. It's clearly a long road, longer than I for one imagined was the case. I had always thought once cured that it was essentially game over for the pain. But each step you take, however painful, must bring you that step closer to the full recovery you deserve. So keep on keeping on.
No words of wisdom from me - I think you're wise enough already. Thanks for this and I do wish you well.
From what you write, I take it the cancer has gone. You don't mention your GP. Presumably you have talked over all your pains with your doctor. Implied in your account is that the pains are 'left over' from the cancer. I didn't realise that was possible? Or are they the sort of secondary pains that result from the body previously holding itself in awkward positions to ease the primary pains from the cancer? They don't sound like that. Could they be from some other source altogether? I guess that will have already been investigated. Love and sympathy. I'm glad you're in a better place now.
Thanks for your good heart felt wishes.
MY PHYSICAL PAIN
The nature of the pain changed. I began to get better. Fully 100% positive to it all. But as the pains subsided in one way they grew worse in others. I can only liken it to severe arthritis. Some mornings when I've woken up my hands have been clawed. I've had to gently massage and manipulate them straight. This grew so bad that I could barely drive and in the office, I constantly dropped things because my fingers were unable to hold or grip them. Then my bones began to hurt which began a new level of worry of osteoporosis.
My feet and ankles I suspect will take the longest to get well because during the chemo I lost all sensation in my feet and ankles by chemo 4. For months it was like walking on painful stumps as my feet weren't there. As feeling and sensation began to return in my feet a whole variaty of new pain evolved.
It's difficult to warn someone of post chemo issues I suspect because each person is so very different. Where some recover after a 12 month some take 2-3 years and longer while others are left with after effects for the rest of their lives. Having spoken to some people who are further along than me since their ops and chemo's etc I don't appear to be unusual. This in itself makes me happy and gives me hope.
Up to the point where I gathered myself together as best I could I did cave in on myself because I'd been ill-prepared for this phase and didn't expect it.
All this is beginning to turn a corner for me now.... Thank goodness. And I just have to keep plodding on the way I'm going. I've no idea how long it will all take, but I will get there.
I find myself explaining to people the cancer is gone, it is the chemotherapy that has left me this way.
I find myself explaining how seriously dangerous these poisons are and remind people I'd spent 5+ hours every 4th week for 6 cycles being constantly injected with poisonous chemicals, a kill or be killed scenario.
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