Hey I’m new here

Hi Marge18. I was diagnosed with tnbc in Aug 2021 after finding a lump in my breast. I had 3 months chemo followed by mastectomy (I opted to go totally flat and had both removed) and have just finished 15 rounds of radiotherapy. I am now about to start 1 year on capecitabine chemo tablets. 

I live on my own which in some ways is a blessing as I can focus on myself and not have to worry about a partner or children. My kids are adults with their own lives and I don’t want to be a burden to them but actually they seem to cope better if they know what’s going on rather than worrying and second guessing everything. Because I keep them updated they don’t constantly ask questions or seek to offer platitudes that I don’t really want to hear.

However I did have some relations who thought that saying everything will be fine means it will be and this was the main thing that made me want to scream and get upset. I decided the best way to respond was to say actually it might not be ok, I’m hoping it will be, but it might not. Please don’t keep saying it will be ok, it doesn’t help me.

For me, being open and frank seems to give me a feeling of being the one in control. However, I know this won’t be the same for everyone. I guess what I’m trying to say is, sadly it’s you who has cancer, you who have to live with it every hour of every day, so really it should be you who gets to set the tone of how you want to deal with it. Don’t be afraid to reach out when you are scared or upset, but equally retain your right to privacy and don’t feel you have to share things if you don’t want to.

I feel these forum groups are a safe space for us to share our darker moments and seek advice or support without fear of upsetting who we are speaking to. All too often I find myself dumbing down my replies to friends & family for fear of making them cry. 

All the very best wishes to you, I hope you are ok - you aren’t alone. Xx

Hi,

1. I was diagnosed  with tnbc 19th April,  confirmed  by biopsy 12th May.  You will have your up and down days, family supportive, but they don't understand its constantly  on your mind, I try to get out walk the dog, trying to do some things I enjoy before chemo  starts next week. Going on these forums really helps, others on here very supportive. have you been assigned a breast Care Nurse,? you can speak to them about worries, also don't google information, as very out of date. Do you know anyone  who's had cancer, I would a friend I could have a rant/ advice helped too xxx

Thanks you Woodland I appreciate your advice I do speak to my children reg treatment ect as there having to take me to appointments at I'm without car and not allowed to drive on my chemo days but I feel they need somebody to talk to xx

Hi sharonshaz39 thank you for your advice and sharing your story  xx reg nurse the hospital put the wrong name down then when asked at my treatment said I didn't have one I'm going to keep trying but deflates me as I've had a few reactions to treatment and spoke  to relevant people as what I was told to do at the start ha ho I will keep letting them know I like this forum to chat to people it's so lovely talking to other lady's and hearing there stories thank you xx