Checking in to social media

This is a photo of my left breast. I am proud to be able to show it here.

From time to time I post on facebook a lot. Checking in to bars and restaurants, announcing my departure for and arrival on holiday. Posting daily holiday snaps, often of churches and historical buildings. Friends and family expect this stuff of me. They pull my leg about the number of trips we take and my brothers expect the churches etc. (mainly so they can wind me up). Recently though I have been quieter. For one thing, we have been to fewer interesting places. But mainly it is because I don’t write about breast cancer there.

All of the people who need to know about my recent diagnosis do so. But I feel guilty that I haven’t told some people. For one I couldn’t cope with telling people who aren’t close or I don’t know well. Others it just felt wrong sending a message to give them that information. Last week I felt tempted to write an end of treatment general message, I felt happy and wanted to share. But it would have caused something of a storm, so I didn’t.

There is one place on Facebook I can go to though and that is the Breast Cancer Facebook Group I have joined.

Checking in, support and sharing experiences

Shortly after I had my mastectomy I searched facebook for Breast Cancer related groups and found one that is UK based. Posts now pop up on my timeline on a daily basis. It is very friendly and supportive. It contains practical resources about equipment, lingerie, insurance etc. But respects that there are many types of breast cancer and that everyone’s journey is different. It is a place for people who have or have had breast cancer, but excludes family and partners. This is for a good reason as everyone needs a safe space. Like me, many haven’t told family and friends and are unable to express themselves elsewhere.

As people will know, I couldn’t post the image above on Facebook. Not that I would since I don’t want my family, friends, ex work colleagues and acquaintances to see my bare tit. But anyway photos of breasts are banned so it would get removed quickly and no doubt I would be suspended from the site too. Thank goodness though I can show photos on twitter, though of course that is my secret account and I am not followed there by vanilla friends. We are allowed though, to show mastectomy photos on the breast cancer facebook page.

This is how I know that my mastectomy scar looks similar to others who have had one that is skin sparing. It is also how I know that the red skin I have from radiotherapy is about right and doesn’t warrant a medical opinion. The page has helped me understand the treatment plans that occur for different types of cancer and recognise mine is on a par. This is reassuring stuff.

Doom and gloom

Checking in to the breast cancer page though, can be a bit depressing. There are people of all ages from young women often with little children to those in their 70s and 80s and often have other illnesses. Many people are calm even when frightened about their diagnosis but others are full of panic and anxiety. People don’t read and take account of what has already been said and so the same questions are asked time and again. The journey of diagnosis and treatment are frightening and this is a safe place for people to express their fears. Sadly too, some people have recurrence, or secondaries at diagnosis. There are those for whom this is a palliative journey and that is really sad.

I’m not sure how long I will stay a member of this group. I may already have taken most of what I need. However it is a useful place to go and to know you are amongst others that understand what you have been through. I am lucky that I have a supportive partner, friends and family I can talk to as well as a whole community of sex bloggers. I have my twitter account to post pictures to and rant on if I wish.

This experience with breast cancer has made me think about what I place in the public domain though. Whether it is here on my blog, on my @MPB twitter account or on facebook. That is probably for the best.

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11 Replies to “Checking in to social media”

  1. You certainly should not feel guilty about not having told some people. That is your prerogative and what ever is best and comfortable for you. I think you have expressed yourself, on your blog and twitter, amazingly well about your illness and feelings. I have great admiration for you Julie 😉 x

  2. It sounds like the juggling is becoming arduous. Still it occurred to me that cancer support group enables a whole group of woman to show and share their experiences. And that you are also able to show and share with your kink friends. And we are learning from you. A long winded way of saying I’m glad you are sharing experiences and images of your evolving body with us!
    Thanks for being here for us!
    Indie xx

    1. Thank you so much. I am grateful that I have this outlet and that everyone has been so supportive. It makes not being able to share on facebook more than ok. xxx

  3. It’s good to have a group where you can talk about something all of you have been through or are going through, but I can imagine that sometimes it’s difficult too, especially when you read about the palliative road for some or others where the cancer came back. But the support is good, and I think necessary too. Also, I love this community of ours where we can share, where we find support, even if others have not experienced what we have. Thanks for continuously sharing, Julie, because as Indie said, we learn from you.

    Rebel xox

    1. Thanks Marie, I agree it is difficult but also useful. I didn’t really highlight enough in the post, I think, how appreciative I am of our community. I so agree with you. xx

  4. Hey Julie, I think you did exactly right to filter your sharing. I too found there were people I couldn’t tell … maybe until I met them face to face, or the treatment / recovery was done and dusted. Maybe never.
    I can totally see what you get out of the cancer support group, but I think it’s symptomatic of how far along your journey you are that you are now needing it less. I get the downside of the group too, and your need to protect yourself from that aspect. Feeling positive and up-beat through this whole process is a fragile mindset and you do need to ringfence yourself from the onslaughts of the worst ‘what if’s to manage your mood.
    Take care of yourself my lovely – we are all benefitting from what you share, but never feel that you have to tell us more than you you feel comfortable with. I am so pleased Master and your close family & twitter friends are providing the required support network – onward & upward xx

Your thoughts are always welcome

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