Continue the Plan C discussion in the metastatic group

Marianne_BCNA

Hi all,
A big thank you to @MoiraC who ran the discussion session at the end of the Plan C. It was very well attended and started some importance conversations regarding access to treatment, talking with family/friends about MBC and the loneliness that can be experienced. We would like to continue the discussion in the 'Living with metastatic cancer' group so you can continue to feel supported by each other to talk about these important issues. 

Please note that when you select metastatic breast cancer as your category, the discussion doesn't go into the Living with Metastatic Breast Cancer group but remains within the main forum. You need to go the group and post there for your discussion to be there rather than main forum.

wendy55

Hi @Marianne_BCNA , so pleased all went well at the plan c discussion,as I was not able to attend, is there any chance that I would be able to read something of what was discussed,
thanks
wendy55

angg66

I would also like to read what was discussed. 

Marianne_BCNA

Hi @wendy55 and @angg66, Giovanna and Riki took notes for the plan c forum and we will be making them available soon. 

jena

Thank you bcna team for organising such a worthwhile event. It was uplifting & inspiring to be in a room with so many other women and fellas, with metastatic disease.  It was a pleasure to meet some of you. I’m sorry there wasn’t more time to meet more of you & share stories and ideas.  Maybe the next conference could be over 2 or 3 days with a dinner? (I appreciate this is a huge ask for bcna staff  )

My favorite session was the one about exercise as medicine - I’ve always been a firm believer so it was very interesting learning about research that is taking place at Edith Cowan uni.  I plan to contact the exercise medicine research institute to see if it’s possible to have an exercise program designed for me long distance.  My bones a riddled with Mets and my left pelvis keeps breaking   The exercises I’ve been given by my local exercise physiologist are too strong for my bones so it would be great to discuss my current exercise program & my desire to get fit again with someone who understands what cancer does to bones. I have been active all my life and it is driving me crazy being able to do so little. I’m sure most of you feel the same.  

I keep hoping someone will have a magic wand to wave over me and repair my sorry bones. Sadly ..... 

Ellamary98

I was also really inspired by the Exercise as Medicine talk. I'm a fan of high intensity exercise, and despair a bit when I hear advice to choose gentle exercise ( great for mental wellbeing, but it doesn't rock my boat). It was empowering to listen to Rob explain the direct benefits of short, intensive bursts of weight-resistant activity. 

Thanks, BCNA! The Plan C conference was terrific. Unfortunately, my husband and I had to leave before the group discussion, but it was nice to chat with some of you over lunch. 

gjf

I too have bone Mets and love exercise so soon after diagnosis was looking for expert advice to enable me to know how far I could push it with exercise without risking pathological fractures. My oncologist seemed to me to be too cautious and I didn’t want to lose fitness or mental wellbeing! In the end I got a referral for a physio from my hospital who looked at my scans and advised me to enjoy low impact exercise (supported/guided where necessary and possible) like Pilates, swimming, cycling, walking and hydrotherapy plus daily stretches/exercises. It’s done me the world of good.

wendy_h67

I too have numerous bone metastasis and find walking any distance a problem. I have been warned by my oncologist and orthopaedic specialist, not to fall over or you risk a fracture . My largest mets are in the head of the femur and I'm a border line case for surgery . I use to love walking , but I also love swimming so maybe walking in the hydrotherapy pool would be a good option. I would like to hear more about the plan C forum as well.

jena

@gjfa @wendy_h67 @Ellamary98
Isn’t it frustrating beyond words not being able to do simple and enjoyable things like going for a long walk along the beach / the Park walking trail or hitting the single track on a mountain bike.  How I long to ski again!  My daily walks are only around 1km and I can only just ride my bike again - ever so carefully on the flat   The break in my pelvis moves as a cycle. .... not very nice. Luckily I live on a flood plain.  I plan to resume swimming again next week.  I’m simply frustrated that I can do so little. 
I called the Edith Cowan Exercise Medicine Research Institute. As I live on the other side of the country I can’t participate in their research however the person I spoke with was very helpful. She suggested I get on the Exercise & Sport Science Australia website essa.org.au/find-aep  to find a local accredited exercise physiologist. The person I’ve been seeing is on the list. She is good in so many ways but doesn’t seem to appreciate how fragile bones with Mets can be.  Some of the exercises she has given me are simply too strong for my pelvis - and I love to work out hard. My self modified program is going well but .... I’m sure there must be a magic exercise that will make me all better again  .
I live in hope   

Ellamary98

Hang in there, @jena ! It sounds like you are doing all the right things. I love that you have a good PT- that's inspiring. I am gpoing to have a look at the essa website now.

KatieT

Can someone please help me join the Living with Metastatic Cancer group?  I have tried clicking the join button in a few different ways but it doesn't load properly for me. 

Giovanna_BCNA

Hello @KatieT I have just sent you a request to join the Metastatic Cancer Group