Member activity

    User Journal

    My journal is about my experiences with cancer, having it, recovering from it, and realizing, right now for me, recovery is not like taking off a cast after six weeks and going on your way in life like nothing happened.
    I can see from reading about many of your experiences (I just joined Cancer Connection August 29/17) how common several of my concerns, issues, symptoms and challenges are. I thank you all for your honesty and courage to talk about this amongst others going thru the myriad of treatment or support or diagnosis. I truly believe we could all write a book about cancer and the way we each got thru the challenges as they arose.

     My cancer experience began after finally being diagnosed with Metastatic Adenocarcinoma of Unknown Primary in June of 2016 when an enlarged lymph node was removed from my pelvis. June 01/16 I had surgery and felt good - pain free - after months of discomfort and testing. I had 12 days of comfort, then June 13th came with the news of Stage IV cancer. What I thought was going to be a short recovery from day surgery has lead me to where I am today. 

    I feel lucky, that I won the Life Lottery. So far so good. After exhaustive testing in seven hospitals, the decision was made to treat the cancer the Doctor' knew I had vs the Unknown Primary that still has not been identified.

    I have stopped the pain killers, blood thinners, nerve blockers and try to live as normal as possible. My left leg is an issue, surgery left it numb from the top of the thigh to just below the knee. The lymph edema effects the entire leg, pelvis, hip and at time the genital area with swelling and pain. I have several compression garments I use to reduce the swelling from excess lymph fluid and have been shown how to perform lymphatic massage on myself to drain the fluid manually. 

    When this all got dropped on me, I guess I was looking for that book on how to get thru this - as we all know that book does not exist. We write our own book on how we as individuals get thru our own unique experiences, and hopefully share in an effort to reduce someone else burden or question they need answers to or simply understand they are not alone in this cancer maze. I know how much benefit I had from speaking to others, for example when waiting for a CT Scan or an MRI, or a consult with another specialist. I truly believe at times I was meant to meet that person that day, and got an answer from someone else going thru what I am going thru, because they truly understood my concerns as they have lived what I was asking about. No book would have been able to reduce my anxiety or fear like talking to another person did for me.

    So I have realized that my recovery is going to be life long, and some effects of treatments are not going to completely resolve themselves. I feel lucky to be alive, and although the Unknown Primary has never been found, I have framed my thinking to believe the cancer was killed with chemo, cut out by the surgeon, then  radiation killed off any potential cancer cells that had somehow survived the other interventions. Today is a "good day" and most of what I try to believe keeps the haunting unknown / possible cancer recurrence from taking over my thoughts. When this happens I do my best to go over what has happened to me in my mind to calm me down again, and move forward with life. I have won many battles, but I guess the war will never end. Positive thinking, exercise, good diet and being as normal as possible are the tools I use to fight my war on cancer. I also need to accept that some physical impairment, episodes of fatigue, memory and thought processing (freezing in mid sentence) issues are part of the costs of winning my war against cancer. I am sure many o you that may read this can identify with a lot of the issues I have expressed here. I know it helps me to read what someone else has said about their own experience, and I say in my head "Wow its not just me going thru this", and it helps me make sense of things. That's the wonderful thing about honesty and sharing with others, we all benefit from each other and our experiences be they good or bad. More later.

    Mixed Emotions. The Good And The Bad You've Got To Accept With Anniversaries.

    Here I am, admitted to hospital four days before my surgery. Meet the surgical teams, get the required new MRI for ...
    Posted on Jan 20, 2019 12:35 PM America/New_York

    Progress Made To P.E.T. Scan Access And The Appeals Process.

    Meetings, phone calls, e mails – hurry up and wait.   Lots has transpired since my last Journal Update.   I had a ...
    Posted on Oct 12, 2018 7:16 PM America/New_York

    My Meeting With An Assistant Deputy Minister Of Health

    So, I managed to get a meeting set up this past March 26th It coincided with my Immunotherapy consult and second set ...
    Posted on Mar 29, 2018 2:21 PM America/New_York

    Cleared For The Clinical Trial - Immunotherapy Feb.27 2018

    I got a call late last week, from the clinical trial contact at PMH, "have you heard from your surgeon about the 2nd  ...
    Posted on Feb 25, 2018 7:22 AM America/New_York

    Immunotherapy - IND.228 My Next Kick At The Can.

    January 15th 2018 - I have a consult with my CUP specialist at PMH. I have brought with me my latest CT scans, and all ...
    Posted on Jan 20, 2018 6:32 PM America/New_York