Since I was introduced to the world of social media, I could immediately see how powerful it might be. Certainly, like any new tool, you have to learn how to use it properly, to get the best from it. Which takes time. With trial and error you will find what it does well, and what it does, not so well.
Coming from a business background, and attempting to always keep things simple, I couldn't see what wasn't to like, by connecting like minded people, across the world. Once I found myself taken hostage by cancer, I applied similar rules here. If I can't find physical help for what I need, let me look on the net!
I couldn't find what I felt was required, so I thought I would try and create something. People often ask me why I spend so much time on a project that doesn't pay. But I know, how much difference these blogs make to people affected by cancer. How much they can relate, and how they help to remove that terrible feeling of isolation. Some things are not about money!
Below, I have copied comments, as they were published on my previous post. They moved me so much, that I felt obliged to share them with you. Psychological and emotional support for people affected by cancer, is still desperately lacking, and in a lot of cases, the issues are barely acknowledged. People are carrying this burden constantly, along with their physical problems.
It's not only patients that are gaining from our writing, but I know personally, when I speak to members of my own medical team, how shocked they are at some of the things, they read on my blog, that are happening to me. We are all still learning, but we need to accelerate things. Time is one thing that is not on our side!
first some background of what I believe has given me a clue
about feeling lost. both my husband and I had cancer at the same time - his was
multiple myeloma, mine was ST IV meta BC, amazingly, we both achieved remission,
also at the same time! we decided to mix the "new normal" and live
"life-reinvented", gloriously and to the fullest.
sadly, only 9 months
into remission, hugh died -
very suddenly. I found him next to me in our bed
with no respirations or pulse. after 3 days in cardiac ICU, he was removed from
life support, and I was a widow.
two months later I was diagnosed with
uterine cancer, ST 3 with mets to the cervix. I am starting tx this
it's my belief that feeling lost is really grief. I know grieving
for my husband is a separate (though certainly overlapping) process. but I have
spent a great deal of time in retrospect, and now realize that what you spoke
about reflects what hugh and I lived when we were in remission - a desire to
live on our own terms and not on cancers' term. now, as I navigate towards tx
with a new cancer alone, I can reflect in a more realistic way on what both hugh
and I might have suffered post treatment - and I know we did feel tremendous
grief at the loss of so much. but you see, it was we two, still crazy in love ,
desperately wanting to celebrate life. there were times we hid our pain and
fears and losses - our grief - to help one another be happy.
as I grieve
profoundly for my beloved, I feel extremely grateful for all those nine months
we had, as well as the time we had cancer together. it almost seems a
meant-to-be-ness that we became so utterly entwined and in love with each other,
and a same meant-to-be-ness that we were able to live so happily those 9 months
- ignorance was truly bliss.
in retrospect, as I read your post, I ponder
what all would have befallen us had we not been a couple with cancer, nor
achieved a robust remission together, and not flung ourselves head long into a
life of adventure and delight. my conclusion is that eventually grief would have
had it's way with us, I've wished many times to be able to bring clarity to so
many mixed emotions, chris. sometimes my widow's grief is the overwhelming force
in my life - hugh has only been gone since may 5th. but as I near treatment for
the next gauntlet of cancer to go through now I am more typical of the
individual who will face it alone; and even if one has faithful and supportive
spouses, family, friends, and whole posse of good doctors - there is still the
loneliness, insecurities, fear, and feelings of helplessness.
question is how in this day and age, could the medical community dismiss the
element of grief from our care. the bigger question looms with more urgency -
when and how will the message be delivered, loud and clear, and be dealt with by
clinicians who simply give no validation to their patients, leaving them bereft
and feeling lost and grieving.
chris, I can't thank you enough for
sharing your story in this post. for months I've had such niggling and confusing
feelings about insecurity, fear, and at times, just wanting to walk away from
all things cancer, thoughts that are so foreign and disturbing. being able to
comment meant I had the task of trying to figure out the very bewildering and
sad and overwhelming issues you brought to the forefront. and I am so grateful
to have had your post to finally be able to have clarity.
I am so sorry
for all that you have had to go through. you are amazing, and a wonderful
resource for superb support and the education you give so generously to others.
I hope with all my heart it will all come back to you a thousand-fold. keep
writing - you do it so well, and your are helping legions of other's whose
hearts, minds, bodies and souls are hurting.
much love, and lots of warm
My heartfelt thanks and good wishes go out to Karen, and thank you for sharing.