Finally I got a colonoscopy after many months of annoying my doctor and the results revealed I had a seven centimetre tumour in my bowel - stage 3C cancer.
What an absolute shock that was.
Two days after I got my results, I had a luncheon with quite a few of my work colleagues and several good friends, without fuss or fanfare I told them about my cancer diagnosis. Many of them were absolutely stunned, as was I, some cried, most just hugged me and I let them know that I would be stepping back from work as a marriage celebrant and paralegal to concentrate on my health.
Cancer ghosting is extremely painful...
I also told everyone at the luncheon that my husband and I were moving to Mackay (from Sunny Coast) to be closer to our children and grandchildren.
In early August I began posting on Facebook about the symptoms of bowel cancer and the stats relevant to the disease - supplied by Bowel Cancer Australia.
Several good friends had offered, via private message or a call, to attend chemo and other treatments with me if my husband couldn’t be there. Their offers were greatly appreciated.
In late August we extended an open door policy for friends and colleagues to visit us anytime in Mackay. This was when I began to notice a definite drop off in the messages and offers from good friends - both in real life and on social media.
Shona during chemo Source: Supplied
I reached out to many of them to say, “Hi, don’t be a stranger,” but many of these messages and texts went unanswered. I did a quick check on my friends list on social media and noticed around a dozen good mates weren’t on my friends list anymore.
I was so confused and hurt by this. I couldn’t understand why this had happened. I discussed this with the hospital social worker who explained that this is actually quite normal when someone gets cancer - especially bowel cancer - as it’s not an easy disease to chat about.
She also looked at my Facebook and said because I had been so open about bowel cancer, it had freaked a lot of people out. My Facebook posts were normally shared straight from Bowel Cancer Australia about symptoms etc. My aim was to enlighten people that bowel cancer is not an old person’s disease but apparently I had scared a few people away.
By September I had begun chemotherapy and radiation consecutively and so I’d post an update and a photo on FB - nothing graphic or ghastly.
I was sent a direct message by a friend who I’d not heard from since early August. She reached out to say my Facebook posts were, “In your face and Maudlin to look at.”
I asked for more details and she stopped responding to me and I never heard from her since.
The social worker again reminded me that cancer is very divisive - it can separate friend from foe very quickly. She also mentioned many folks just do not know what to say to cancer patients, so they just retreat.
It was beyond belief that friends/colleagues I had known for 10-20 years had simply vaporised, some of these folks I had helped physically, monetarily and emotionally- sometimes at great cost to myself.
Cancer ghosting is extremely painful and it was so very hard to accept from intelligent people that I was proud to call friends/colleagues. For my own well-being I had to compartmentalise the ghosting and deal with it as best I could.
Shona at the hospital during chemo Source: Supplied
Bowel cancer groups on Facebook were my saving grace, many members in these groups have also gone, or are going through, cancer ghosting and all agree it’s very hard to deal with on top of our cancer and treatments.
On the upside I’ve met and made some fantastic new friends in Mackay from the chemo unit, Church group, painting group, neighbours and medical staff.
But of course I miss the long term friends who have bolted.
For those who have a friend just diagnosed with cancer I would say that there’s no perfect way to speak to a friend with cancer - but a start would be:
• “I’m sorry to hear that news.”
• “I’m here for a wine, chat anytime.”
• “Can I help in anyway?”
• “Let’s catch up for lunch.”
But to simply vaporise is beyond the pale and causes so much angst for someone who is already suffering - please don’t add to their pain!
Fortunately as of June 2021, 11 months after diagnosis, I’m now classed as NED which means no evidence of disease. In the words of Nightbirde: “it’s ok, it’s ok!!”
