Monday, 26 November 2012

Guest post from Nancy Kane a fellow PMP sufferer....

From time to time I like to invite fellow PMP sufferers or people touched by this disease to write a guest post for me. Nancy is a regular follower of my blog and we keep in regular contact.Nancy was diagnosed with PMP at around the same time as myself and we have shared the journey.Nancy lives in Maine in the USA with her family and shares her thoughts at Thanksgiving in the post below.......

November 22, 2012: American Thanksgiving Day

Most days, I do not consider myself a cancer survivor -- a teacher, mother, wife, grammy, daughter, all-around crazily busy person -- but not a survivor.  Most of the time, I do not even think of those months when cancer hovered like an ever-present ripple in my consciousness.   I don’t run, walk, or canvas for cancer.  I don’t “raise awareness.” I have not joined any of those social cancer support groups (virtual or otherwise); I seem loth to enter my name as an official “survivor.” Do I consider it a jinx, perhaps?  Am I like an alcoholic, unable to bring herself to say, “Hello. My name is Nancy.  I survived cancer”?  I don’t know.  

Perhaps my reticence is because I have stumbled upon so many “survivor” blogs that have ended abruptly.  They all begin so similarly: the explanation that the blog has been created to keep family and friends informed; a recitation of the botched and/or elusive misdiagnoses; a tone of innocent, fearful optimism when the disease is finally named; the stark reality of the MOAS, with talk of NG tubes and various and sundry complications; and, finally, the staggering steps to recovery.  At first, the blog posts are frequent, and then, as health and strength return, they morph into normal chatter of trips and children.  The topic of cancer returns only every six months, a pesky fly that buzzes just out of hearing until the notice of the requisite CT scan arrives, only to be batted away when the doctor announces the “all clear.”  However, some blogs do not follow this trajectory. Sometimes a blog drifts off with no resolution. On others, posts return, chronicling a suspicious scan, repeat operations, increased pain meds and more desperate measures, often ending with a short death announcement written by a family member.   I personally call them ghost blogs, and they haunt me.  Still, every day, rather religiously, I click on a few internet links, just to make sure that those particular blog writers are still amongst the living.  For those few minutes, I remember. 

I did not research my cancer until after the surgery, after enough days had passed to convince me that life would return to some semblance of normal. The fact that my doctors did not mention the word cancer to me during the months of fumbling about for a diagnosis helped my ignorance, and then, when the magic disease was finally named, its ridiculous spelling kept my googling at bay.  When I eventually stumbled upon the Wikipedia entry, I read only enough to get thoroughly chilled and then shut off the computer.  Much later, when I gained the confidence to surf for answers, I became voracious, lurking on sites but never announcing myself.  I invisibly followed the final months of several “survivors.”  I almost, but not quite, joined the various PMP support forums.  I only “outed” myself on a few blogs -- a fellow teacher, a fellow Mainer, and this one -- whose writer had surgery just about the same time as I. 

I have had cancer, and I have survived an initial assault.  However, I do not think that I will live as long as my 87 year old mother.  This disease has shown me that bits of my body, unbeknownst to me, are already lying in wait to take me across the great divide.  It may be cancer that carries me, it may not, but I am, after all, mortal.  I have seen the great divide, and it was not frightening.  However, I am very grateful to be on this side still. I have grandchildren to kiss, a husband to hold, a daughter to cherish, and students to teach.  Life is sweet: each gilt sunrise a blessing, each star-studded night a benediction. My cancer was one-in-a-million, but this moment I am living right now (if I have done my math correctly) is one-in-a-1,736,487,660, with another dozen or so since I typed that last sentence.  I don’t know how many moments I have left. They will pass, as most moments in life do, generally unnoticed, punctuated by joy and sorrow and moments like this one: the winter sun shines obliquely on the stark, gray trees that, until recently, shone with golden leaves.  Beyond, the river ripples, turning their reflections into a funhouse mirror.  The house is quiet; I sip hot, bitter coffee and think of you -- all those who have not only survived, but who are living life fully and gratefully, as well as those who have not, but who still live for us through their words in this strange, virtual world.  Happy Thanksgiving, all

Thursday, 15 November 2012

The Cancer Survivors Club Book Launch

It was an early start for me as I had been asked by Chris Geiger (author of the Cancer Survivors Club) to join him for a radio interview on BBC Radio Bristol’s morning show with Steve Le Fevre.
I met Chris as agreed at the studio on Whiteladies road and Chris who knew the site well led the way. As a regular listener to the show whilst commuting to and from work it was interesting to see how it was all done. We waited outside the main studio in a large office filled with banks of computers used by the reporting staff. Directly outside the studio sat Jemma Cooper who presents the weather updates on both the radio and local BBC news so we passed the time of day with her. Chris and Jemma knew each other and they talked about the various things they had going on.

 We were soon ushered into the studio. There was a main room with a large desk in the middle I guess where the producing staff sat and immediately to the left was a sound proofed room from which the show was being broadcast. We were briefed by the producer as to what would happen and that we needed to enter and leave the room as quietly as possible. Very quickly we were ushered in and waited quietly whilst the guest in front of us did the “Thought for the Day” slot.
 Then it was our turn. Steve sat at a large table with loads of radio equipment on and a microphone on an arm in the middle. We sat on the end of the table on two office chairs with desk mounted microphones. The interview was fairly brief but I believe we got our point across well discussing both my story with Psuedomyxoma and also the Cancer Survivors book.

You can hear the clip by clicking the link below and forwarding the slide bar to the 2hrs 20min position.

It was soon all over and job done. I briefly chatted with Chris and Jemma again before saying goodbye and agreeing to see each other later that night for the book launch at Foyles book shop.

The rest of the day was busy as we did the usual running around. I collected the girls from school and they quickly got changed before we all jumped into the car and headed into Bristol. The plan was to get the girls a dress each ready for the upcoming Christmas parties and then get some dinner before heading to the book launch.

 We met mum and Dad quite by chance on our way to the bookshop and were joined by a close family friend Kevin. We headed upstairs and at the rear of the room was an area lined with seats and already quite busy. I said hello to both Chris and Catherine who were greeting people on their way in and introduced them to the family. Catherine remarked that it was great to finally meet them as she had  read so much about them!

 Everyone was soon seated and Chris took to the stage to talk about the book. In total there were nine of the twenty three people featured in the book at the launch as they all lived in the Bristol area. It was clear from Chris’s speech that he was very passionate about the book and his cause; trying to help people and give them hope by gathering and producing the inspirational stories inside. His speech was touching, reducing some listeners to tears, inspirational and funny and he really got his message across well. Its Chris’s dream that he can help others by sharing inspirational stories and that this is just the start of something bigger and that the “ambassadors” featured in the book as he calls us can help him create a butterfly effect that start as a small beating of our wings to create a big positive effect elsewhere in the world.

The Cancer Survivors Club Book.

Chris Geiger and nine of the Cancer Survivors Club Ambassadors.

Chris presenting me with my copy of The Cancer Survivors Club book.

 He presented each of the nine ambassadors with a signed copy of the book marked with an inscription and numbered with our membership number to the Cancer Survivors Club. I’m number 17, hopefully many more will join us in the years that follow.

 The proceeds from the book are donated to cancer charities across the country to help them help people like me. The book is truly inspirational with amazing stories which are sometimes sad but also with their comedy moments and is a great read. They would make the perfect Christmas gift for someone, so go on, buy one, be inspired and help raise funds for cancer charities.