A buddy for Mum - Bone Mets, HER2 Negative.

Living with secondary breast cancer Supporting each other and sharing experiences
1

Hello

I have posted once or twice on behalf of my Mum (she’s not on the forum yet)

She is 56, and had a diagnosis of HER2 negative, ER+ in April 2020, she had a mastectomy and radio (no chemo). In September last year she found out she had bone mets to her spine. It’s been a very confusing and upsetting time but she is slowly coming to terms with things.

She is currently on Ibrance and Fulvestrant injections and things are steady, she recently had a blood transfusion and some scans so is still quite new to all of this. I am trying to find a way to introduce her to other women who perhaps can chat on text/email/phone (she has facebook messenger but not an account) about day to day things, their treatments, chit chat etc. She is very good at giving support too.

I don’t think she is very keen on forums etc.

I just don’t want to overwhelm her or upset her with lots and lots of information/statistics, so perhaps someone who is happy to talk to her and perhaps make a new friend or two!

She is very kind and warm, funny, loves animals, her tv soaps, shopping, (hair, make up etc :-)) history, work etc and is happy to meet new people (don’t have to share the same interests!)

She’s currently furloughed (still working full time for now) and is spending most days just her and her husband dealing with this dreaded condition, so I think this is important to her and she’s happy for me to help her along!

Doesn’t have to be anything heavy, just to show her she’s not the only one and that there is life with and after a secondary cancer diagnosis.

Thank you anyone , for taking the time to read this.

x

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HI Danny2020,

It’s very good of you to have sought out the forum and post on your Mums behalf. So sorry to hear of your her diagnosis, must be hard for all of you as well as clearly your Mum. 

I appreciate forum’s aren’t for everyone…I just read things here for the first 6 months or so after diagnosis and then starting posting. In case it helps you convey the forum to your Mum having been a member since 2014 I can honestly say it’s a very warm, non-judgemental place.

We all try to tailor our responses to respect how other may feel, respecting personal preferences. So re your Mum’s concern about wanting to avoid statistics…we all get that many people don’t want to know such info or just find it doesn’t help, hence members only tend to make ref to how or where to obtain such info when someone specifically asks and genuinely seems to want to know (and even then emphasize that its a personal decision and perhaps to speak to their oncologist re interpretation). So please reassure your Mum on that count. 

A couple of thoughts:

  • BCN offer a “someone like me” scheme, which is precisely as it sounds. If your Mum was to phone the tel no (top right hand side of screen), and ask, BCN would match her to someone with a similar diagnosis.
  • Post thread subjects vary from direct bc topics (advice, just sharing thoughts, feelings, suggestions, support), to threads which are far more social… one example, the thread ‘stop feeling guilty in benchland’ has been rolling since 2011 and is currently as much about snow and food as anything else! The coffee lounge section is also a place for light-hearted threads.
  • You tend to get to know people as you go along, I guess like minds/experiences tend to post on similar threads. Once she gets to know a few people she could then decide just to use the forums messaging, which is more like email (hosted by BCN but not visible)? 
  • Your Mum might want to consider signing up for the moving forwards course, I did one about a year after diagnosis. It’s very practical about how to manage side effects of treatment, relaxation techniques, plus a lot more. Tends to be a smallish group of women (12-15ish as I recollect - was pre-covid when in person). I’d imagine they keep the groups size fairly low even if it’s online now. When I did it the women ranged in age and diagnosis and it was very friendly. Anyone who was happy to exchange contact details did so. Next course dates:
  • forum.breastcancernow.org/t5/Online-courses-and-programmes/ct-p/online-courses-and-programmes         

Me - I was diagnosed in 2014 (in my early/mid 40’s), had a secondary scare a few years later (so slightly straying into this part of the forum, since thankfully it turned out to be fractured ribs). Initially I posted primarily for a mixture of advice and support, plus helping others where I felt I could. Now it’s mainly to help and support newbies and keep in touch with a few of the forums other regulars. I also find it reassuring knowing others who get it are out there.

Obviously you know your Mum, perhaps try the someone like me matching service and read any replies you get to this thread to your Mum to see if it might encourage her? She could start a thread in the secondary area just saying new to the forum and would like to chat to others…   

I hope your Mum finds a way to reach out…personally I strongly recommend it! 

I’m sure others will post soon with a bunch of other ideas and thoughts.

I hope you are ok too - I know it’s hard for family and friends too. Nice that your Mum has such a considerate and caring son! 

Seabreeze  X  PS - sorry the above is tad long and rambling - kept thinking of things to add!

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Hi,  I’m 54 just diagnosed with secondary bone mets in hip which is ER+ (still waiting on HER2 results but was positive previously) struggling to come to terms with diagnosis too. Was first diagnosed with breast cancer in 2017 had double mastectomy, chemotherapy and reconstruction with herceptin and Zometa.

I’m just about to start radiotherapy and fulvestrant. 

I still work full time ( though not furloughed) and have 2 sons, a husband  and a dog (I adore animals especially dogsI 

I would be happy to chat with your Mum, (I don’t have Facebook either) by email, text etc in hope we could support each other. Please PM me if you want my email address.

shirley

x

4

Hi Danny,

What a wonderful and caring son you are, I’m lucky enough to have two sons just like you. Your mum sounds like such a lovely lady and I’d love to talk with her, these forums are absolutely brilliant for help, information and kindness and I’ve benefited greatly, but you can’t beat one to one chatting can you?

I have bone mets diagnosed in December 2019, I’m ER & PR positive and HER2 negative, so the same as your mum I think, different meds, I’m on Ribociclib, Letrozole and Zoledronic acid bone infusion. 

So very sorry that she’s in this position, it’s incredibly scary and lonely, at first I was totally shocked and lost, so completely understand her situation. 

Now, although I’ve made it here, I’m pretty hopeless at Facebook, but I do have an account and messenger, so maybe that would be a good start?

I’ve read the other lady’s reply and she seems extremely knowledgeable so is it a case of phoning the number on this forum?

Anyway, sending love and hugs to you and your mum, and perhaps me and her may find a way to chat :crossed_fingers: ? xxx