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
  • Hi Joyful,

    We all need that one good friend who is there no matter what! Green heart

    Best wishes

    Megan
    Macmillan's Online Community team

  • Hi everyone

    This is something which I have experienced in a little way - but did not realise it was an "official" thing!

    I am a chap going through Chemo and Hormone therapy for my stage 4 prostate cancer. I have really noticed that some men are really flummoxed by the thought of talking to someone who has cancer and can seem a bit standoffish.  Interestingly I have also noticed that their spouses are actually more interested in what is going on (probably hoping to be able to look out for their OHs...)

    I have been quite open and honest about the process, problems and treatments and have found it "good to talk" - even to the extent of just saying Hi to one of my (female) neighbours just before typing this who instantly asked me how I was doing and had I finished chemo yet...I am also lucky that there are a couple of chaps along the road who are interested in the issue so are also checking up!

    My wife and I have a reasonable circle of friends but do not see folks all that often due to living miles apart - but WhatsApp is a great way of keeping in touch.  I send a picture from each treatment of me hooked up to the drip to let them see what is happening and to keep them up to date on progress. (I make sure that it is only me in the photo as well)

    We have a big reunion weekend and meal planned for after I get over the next round which will be great for a catch up ( and probably plenty of questions).  Something to look forward to in the near future....

    Best wishes to all 

    KrisPy

  • Hi KrisPY,

    Thank you so much for sharing your experience. I’m sure this will be really helpful for others in the community who may be going through something similar and can relate to what you’ve shared. It’s lovely to hear you have a big reunion weekend with your friends coming up, it will be nice for you all to get together and catch up.

    Alongside the peer support available here on the Community, the Macmillan Support Line teams are also there for you and your wife. Sometimes it can help to talk things through with someone who’s there to listen and offer support. They’re available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

    If you have any questions, please don’t hesitate to email Community@macmillan.org.uk or send a private message to the Moderator account.

    Best wishes,

    Lizzie 
    Macmillan's Online Community team

  • Hi I experienced this with someone I thought was my true friend and would understand having gone through the same thing! I was so sad as I thought I’d be able to count on her support and knowledge. Just shows you as friends I knew through work have been much more supportive.

  • Since my diagnosis I have noticed a  gradual emotional distancing or the micro jumps away from me from some friends collegues which I have put down to either or combination of;

    How people process the news differently, either from their own past experiences of dealing with cancer with friends family members, often issues that are still raw or unprocessed. After finding the right situation, I was able to ask them about it,  and encouraged them to talk about it, how good the forums are here not just for the patients. Others remain closed but I also respect them for that. 

    It's human natue to avoid difficult conversations and process infornation. That they are worried about how to and what to talk about. 

    A manifestation of the different ways people  deal with bad news. Avoidance strategies. Slow distancing. Being squeezed out of the workplace. 

    Myself becomming hypersensitive to friendship and relationships. Catching myself and realising I need to be more active in letting my friends know that bucket list needs friends to experience it with. Take the opportunity to do something together without discussing difficult things. 

    Learning to ask for help. It seems sometimes people are so overwhelmed by what you told them or feel powerless. A small simple ask for help or advice about something allows them to externalise the cancer and become engaged personally or part of the team.  Following, the importance of saying thankyou. 

    Our increasingly fast society where something is raised, delt with and has gone away (cancer it seems is the opposite). So converstions with some become a one off conversation rather than a form of long term gardening.

    Phyisical isolation, I once prepared some food as part of a wider gathering and it was mostly left untouched.  

    There are many others. Overall, I try hard never to judge and to understand the why. However empathy does not mean I have to agree, I find it can be helpful to move forward and either enrich a relationship or if needed, letting go.