Have you experienced cancer ghosting?

3 minute read time.
Have you experienced cancer ghosting?

Some Community members have been discussing the term ‘Cancer Ghosting’ in the Online Community forums. It is a social term that those living with cancer use to describe family and friends not being there to support them once they have told them about their cancer.

“Have any of you experienced cancer Ghosting? It’s where friends and relatives suddenly disappear when you announce that you have cancer. It’s a recognised syndrome apparently- Google it. I am afraid I have experienced it. It can have a big impact.”
Community member, Cancer ghosting discussion, Bladder cancer forum

“Since my diagnosis last year my friends have all disappeared. Messages have stopped, and I'm left with my husband and dog. My husband is my rock, but I miss the distraction my friends provided. It makes the journey hard. No meeting friends for coffee or gossip, no support for the hubster. I'm not sure what I did wrong lol. I just feel so trapped. Nowhere to go other than appointments, no one to see other than medics.”
Community member, Ghosted by friends discussion, Emotional support forum

You don’t have to feel alone when processing your cancer diagnosis. Online forums like our Online Community can be a safe and supportive space for you to ask questions, share personal experiences, and talk about how you are feeling. You may find that you are not alone with how you are feeling.

“I get very lonely too and, in my head! I need to be with other people to gain a better perspective so I'm trying to join more clubs and volunteering etc. I hope I've helped.”
Community member, Living alone with cancer discussion, Cancer chat forum

Talking to people about cancer

It’s understandable that some people may not feel comfortable talking about cancer and their feelings, fearing that it may cause some distance from their family and friends. If you have been diagnosed with cancer there is help is you find it difficult to find the words to talk to your family and friends about what you are going through.

There’s guidance in the Talking about cancer booklet to help put your feelings into words and understanding the reactions of others. It also has practical tips for talking and asking for support. We hope it helps you deal with some of the questions or feelings you may have. Visit our online information about talking about cancer.

It can also be helpful to try and include your family and friends on your cancer journey. If you feel comfortable taking someone with you to appointments or creating a group chat with updates. These are some of the suggestions we see members sharing in our forums.

“Maggies is brilliant. I’ve been on a few courses there that really helped me. Plus if you just want to pop in for a chat that’s ok. Also friends and family can also go in for a chat to help them understand.”
Community member, Cancer ghosting discussion, Bladder cancer forum

“Now is the time to get the group WhatsApp going and ask for help. I felt dreadful doing it but thought if it was any of my friends I wouldn’t hesitate to help. I sent out my dates for treatment and every single one has been filled with a chaperone. Whilst you physically may not need it….emotionally it’s lovely to have the company and as time goes on you will get very tired.”
Community member, Newly diagnosed discussion, Anal cancer forum

“It must be so hard for people who haven’t been through this to even start to understand or even know what to say. Luckily, we have this community & we are all absolutely getting each others feelings.”
Community member, So sick and tired of this discussion, Bereaved spouses and partners forum

Have you experienced cancer ghosting? Share your tips on how you dealt with this, alongside any advice for maintaining relationships throughout treatment.

Ghhv
  • Patsy great to hear you have got some stronger relationships.

  • I wasn't close to my family and reached out telling them about my cancer in hopes to have a relationship with them and some support. In return I had no help from any of them apart from my twin sister. I reached out to others and no one was willing to show compassion. It was such a lonely place. My sister helped me get through it... but no one understands unless you go through it

  • Hey , thanks for sharing your experiences here.

    I'm really sorry to hear that you weren't close with your family, and that you received no support from them. I am so glad your twin sister was there for you, though. It isn't just a distant family that can be difficult, either. Family can also be too close to the situation, and so it can be hard to share how you are feeling with them.

    You're right that often, the people who can support you best are those who have some idea of what it is like to face similar challenges. That's what's great about the Online Community.

    So, how are you doing now? Do you need any help finding further support?

    Best wishes,

    Matthew - Online Community Team

  • I didn't know it had a specific name but I most definitely experienced this sadly. I lost a friend and 1 family member during my cancer journey. I didn't expect anyone to bend over backwards for me because of my diagnosis - I just needed the people I loved and cared about to be there for me. Not constantly - just little check in's from time to time - especially after big appointments/treatment. 

    I totally understand that hearing someone you care about has cancer is difficult but think about the person has been told they have cancer. People don't need to do anything special - just be there. 

    I can remember how hurt I felt that a so called good friend and my own brother were not bothered / not interested. It wasn't they couldn't handle it - it was they just didn't care. If you can't handle it you can still drop the odd text to check in or a 'hope surgery goes well' etc.... but there was nothing.

    Whilst I was going through treatment I pushed the hurt and anger in connection with their disregard for me to the back of my mind as I had much bigger things to deal with but I found after - when I got the all clear that is when it really hit me, along with the anger of why me? 

    It came up in counselling and when I used the Buddy service Macmillan offers.  It has taken some time but I have accepted their choices and no longer have anything to to do with them (that was my choice) - to take control back of the situation. I knew that was my only option because I couldn't forgive them. And I truly see it as their loss not mine - as I know I would never treat someone like that whether I had been through a cancer journey or not myself. 

    I have moved on now and I am so truly grateful for the friends and family that fully supported me through my journey.  It has made me realise who is important in my life.

    The biggest thing I would say to others is you cannot control how other people react to your diagnosis and it is not for you to try and encourage them to be there for you. Let them make their own decisions and let yourself move on with your life focusing on the right people in your life and yourself. 

  • Hi  

    Thank you so much for sharing your experience, although I'm sorry that you went through that.

    It's positive that you have found some peace through counselling and the Macmillan Buddy service. We really appreciate you taking the time to offer your advice to others.

    We hope that you also find it a comfort to be part of our Community. Do keep chatting in the forums, lots of members are benefitting from your shared experiences and support.