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Tag Archives: cancer caregiver

10 Things not to say to a Cancer Survivor

I first met Drew at Stupid Cancer’s 2014 OMG Summit in Vegas and then again at various conferences over the following four years. I was struck by his intense curiosity and willingness to learn everything he possibly could about the AYA cancer community, in which he included not only survivors, but caregivers too. Over the years we have often chatted about the ever-evolving language surrounding the experience of cancer, and the joys and challenges of communicating within it. As a pithy way of sharing those conversations with a wider readership, I have asked Drew to create a Top 10 List: What Not to Say To Someone Living With Cancer. Have at it, Drew!

 – Pat Taylor, CKN Editor

 

 

drewbologniniby Drew Bolognini, Caregiver/Advocate/Videographer/Editor

 

To begin with, let’s get one thing straight: I’’ve been as guilty as the next guy of saying the wrong thing at the wrong time. I still make mistakes. We all do, but I believe we mean well, really. I hope this list will make us all smarter.  Well, the rest of you readers anyway. I’m not sure anything can be done about me.

 

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Moving On, Carrying On: Reframing Loss Without Erasing It

pattaylormovingonby Pat Taylor, CKN Editor

Originally published on The Huffington Post
The email flashes across my screen in bold, black type: “B got married on the weekend. So… how are you doing?”

 

How am I doing? My initial response is: “Fine. Happy for him. I wish him wellness and joy!” But then, my face cracks and suddenly I can barely breathe.

 

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5 Things I Wish I Knew About Loving Someone Affected by Grief

AlexMacKinnonby Alexandra MacKinnon

 

Starting a new relationship with a guy who had just lost his brother and best friend had its difficulties. At 18 years old, love was new and exciting but never before had I come across the unique set of challenges that lay ahead of us. I actually met Toby after his brother had been diagnosed and a few wonderful months past us by before the bombshell was dropped – Robin wasn’t getting better. At that point I watched him change before my eyes into something unrecognisable and the romance was over, briefly… Of course issues were resolved and after his brother’s untimely passing we reconnected. The past five years since we met has been beautiful but knowing what I do now, I may have done some things differently – which brings me to this article: 5 things I wish I knew about loving someone affected by grief (in no particular order)…

 

  1. Grief has no time limit.

5 years ago when Toby first came into my life I could never have imagined the lasting impact the death of his brother would leave on him and his family. As someone lucky enough to have lived the first 23 years of my life without any real experiences of loss , I think deep down I believed that grief was just a process he needed to go through and that the process was text book. You go through the stages – denial, anger, bargaining, depression and acceptance – then it’s done, it’s over. But one thing I wish I knew then was it’s never really ‘over’. Of course over the years things have changed, I know that he doesn’t spend days mourning the loss of his brother and he’s no longer consumed by the loss, but from time to time the pain will rear its ugly head to remind us both how fragile life is.

 

  1. Loss of intimacy is normal.

One thing I certainly did not know to expect was that intimacy would be difficult. For a long time I tortured myself about why things weren’t the way I thought they should be – why didn’t he want to be close to me all the time as I did with him? The effect on my confidence was evident and a difficult thing for us to learn to talk about. After some time I learned to accept that Robin’s death had caused Toby to become numb, and I believe this was his way of dealing with day-to-day life, as it was too painful to feel anything. After a difficult few months we spoke and I encouraged him to accept grief counselling from our local Hospice, and sure enough as he learned to deal with the pain, those feelings returned and intimacy was regained.

 

  1. I have the right to be sad too.

Sadly, I never had the privilege to meet the man that gave my partner purpose. It was a difficult thing to hear so many wonderful stories and see so many people that I care for deeply in pain and yet not feel a part of it. I struggled a lot with seeing the person I love the most in the world in pain and only being able to empathize, but not really relate. Having never met the handsome and talented Robin thoughts crossed my mind that I had no right to feel sad. It has taken years for me to accept that although I can never take the pain away or fix my partner, it’s ok for me to share that sadness and acknowledge the influence Robin has had on both our lives.

 

  1. It’s not me he’s mad at

I can’t count the number of times I have experienced seemingly out-of-the-blue outbursts of rage, sometimes pointed in my direction. For a long time I could not accept that this was part of grief and that it wasn’t related to me or my actions. I repeatedly asked the same question – ‘What have I done?’ As time went on we learned to speak to one another in a more open way. He learned to tell me what was going on, if it was a bad day or he was particularly missing Robin. After time I learned to accept that I was not always the primary cause of his pain or his happiness.

 

  1. They cannot be replaced

It was a painful realisation when it hit me that I would never be able to change what has happened, and more importantly, I could never replace Robin. When you care for someone you desperately want to be able to give them whatever it is they are missing. For a long time I tried hard to fill a void that I was unable to fill.  I wanted to be able to take his pain away and bury it somewhere deep. Without realising it, I wanted to walk into his life and make everything better. Of course, to a degree we have helped each other through the pain but my outlook has changed – I have learned not to compare love but instead accept the beautiful uniqueness of the different relationships we have in our lives. I feel grateful he had such a wonderful influence in his life and although we love each other deeply and are soon to be married, I am happy knowing Robin is completely irreplaceable, and that’s ok.

 


 

Alex Mackinnon is a Care Sourcing Co-ordinator, dog enthusiast, loving aunty and cancer awareness advocate. She was introduced into the cancer community after meeting her now fiancé, Toby Freeman, Founder & CEO of The Robin Cancer Trust, after his brother died. She has travelled with him over the past 5 years, experiencing the highs and lows of being in a relationship with someone affected by grief & loss, and offers a unique insight into their journey together.

 


 

The Price of Our Stories Makes Caregivers of Us All

 

 


 

by Mallory Casperson, Living with Cancer

Running Lacuna Loft is my full time job.  Lacuna Loft is a non-profit organization that seeks to empower young adult cancer patients, survivors, and caregivers by providing psychosocial and lifestyle support.  It takes more than 40 hours a week and it is a path that I have chosen for myself, or one that has chosen me, depending on exactly how you look at it.

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An Open Letter to Cancer Caregivers

AmberGillespieby Amber N. Gillespie

 

When assuming the caregiving role, I think it is easy to think of how to help: take over meals, offer to clean house, run errands or the kids to/from events, etc.  Or if you live far away but still want to help, you may send flowers. Since I have assumed roles of both patient and caregiver, I can say that it is just not that easy.  Hopefully my ideas below will help you.  I don’t claim these to be “out of the box” or “new” caregiving tips, but they come from a long-term patient (me).

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