Help me, help you, A consumer advocate

Deb P

Hi all, I've been invited to be a consumer advocate for a research project aimed at helping women post breast cancer treatment with self management skills for reducing the symptom severity &  quality of life dealing with side effects from treatment. In doing so I would love to get feed back to find out what women are dealing with, what they would like to know about, & how things helped post breast cancer maintain a new normal. Their aim for the research project is to produce a resource booklet to be given to patients at the end of their treatment.

Talking to the BCNA we felt there is space on the online network to actually set up a new online support group, to continue supporting women post treatment. Thoughts about a name for this group range from 'Transition to Survivorship', 'Life after active treatment', 'The ongoing challenges' , 'The new Normal', 'Helpful Hints'.  I would also like HELP, with any ideas or offers of help with this project. It's all about helping those who are about to finish treatment & find themselves feeling lost & worried about what is normal after their treatment.

I will share with you my main side affect after treatment was Neuropathy in my feet. I'm not sure if anything but time has eased the pain & numbness in my feet, but I did try stimulating them with alternating foot soaks with very warm water & then cold water to help stimulate the nerves. Elevating my feet at the end of a long day on them & not wearing too tight socks & shoes has also helped. 

I'm open to any suggestions, all feedback welcome

Thanks Deb

deh

Hi Deb

Just a few ideas that have made a big difference in my life, during recovery from bc treatment- and beyond!

My bc treatment included removal of some lymph nodes so post surgery lymphodoema was a big concern for me. Fortunately I had early contact with a "tuned-in" physio who helped me understand the risks and how to manage them. Her gentle lymph massage techniques were so effective in relieving both physical and emotional discomfort and stress that I still practise them, over 4 years later (by myself or with my husband's help). Using Bio Oil especially on my surgical scars has been another helpful healing tip for me.

I also benefitted from our local Encore Program. It had huge therapeutic value for me and included breathing practises, simple  meditation/mindfulness skills and water based exercises that improved my mobility, flexibility and general posture. There were lots of opportunities to share with others and learn from them. It was a major milestone for most of us, to be able to wear our swimmers again and overcome any negative feelings about changes in body image. Lots of liberating laughter and fun!

Being open to complementary therapies such as counselling, reflexology and reiki helped me heal and become more self compassionate - and more flexible in my thinking about life. I feel very lucky and grateful for all of these positive experiences -as finding the services and support I needed, when I needed them, has been hugely self empowering. 

Ongoing contact with my GP and followup visits to my breast surgeon are very important to me, in monitoring my breasts and managing my fear of recurrence. Although I am reminded of my vulnerability ( some deja vu moments/ feelings), I am now so much more self aware - and resilient !

To sum up, my tips are are

*  have a personal, post treatment plan in place that works for you

* keep tuned into your needs ( physically, mentally, emotionally, socially) - be kind to yourself

* try new things - be open to change

* strive to thrive, not just survive!  

All the best with your consumer advocacy work.

Di

Deb P

Thanks Di for your words of wisdom. We never really want to be a breast cancer consumer. We have no say in the matter. But we certainly can have a say in guiding other women through all the highs & lows of surviving this disease. 

Regards Deb

mum2jj

Wow. Good for you. I also did the encore program. I was not really into face to face support groups during my treatment but I found doing the encore program after it finished fabulous. Not only did it help get my lymphedema under control but it also helped me make friends with a beautiful group of ladies who had all had breast cancer. We had all finished treatment and were from all walks of life. We now meet regularly just to catch up with each other. I call them my BC buddies, I somehow became the coordinator of our little friendship group. I am so blessed that encore helped me meet them all.

The other thing that helped me move on was after my reconstruction being asked to help facilitate the online breast reconstruction group. I really get so much out of helping other women find info and support during their reconstruction journeys. I wish I had more hours in the day to do more of this. 

 

Hope me this helps

 

Paula

Deb P

Thanks Paula. I'm sure everyone you support through their journey appreciate having some one to talk to. I think when diagnosed if you could be assigned 'A PHONE A FRIEND'  someone you who has been through the experience, it would be very beneficial.  Yes I agree we could all do with more hours in the day.

Regards Deb x