Hello everyone, sorry for the delay in getting this tweet summary out. Busy month so far!
On 29th May, we were lucky to have Nicole Stout host our chat. Nicole is specialist in physical therapy and rehabilitation for those living with and beyond cancer and her chat focused on activity for cancer survivors.
Below, we have posted the discussion topics and a few replies which summarize some of the themes of the chat. We had over 350 tweets during and shortly after the chat and we are working on a way to collate them all for easy access. We will update this post with this as soon as possible.
The first topic that Nicole introduced was: “It is quite a challenge to stay active during cancer treatments. Did you receive any advice or guidance about how to get active or stay active? #CSSMchat“
Kimberly Miller, PhD: “Researcher here but anecdata from patients at our cancer center is they’re told to stay active but don’t know what that means! No clear guidance. #CSSMchat“
Jennifer M. Jones: ” The problem in Canada is that there is very little access to physio unless you are an in-patient. #CSSMchat“
Sarah: “As a young adult with cancer in the UK I felt invisible. After a 10 week in-patient stay with wasted muscles I had to practically beg for a physio assessment. I got one and was deemed ok for discharge and got no follow up or exercise advise #cssmchat“
Mary Beth Collins: ” In 20 years, my son has never seen a physiotherapist. #CSSMChat“
Emily McIntosh: “I didn’t get any guidelines, but was told that exercising would help with symptoms. #CSSMchat“
Our second topic of the evening was: ” Exercise programs and advice for people living with and beyond cancer are becoming more and more common. Did you find a program that was useful for you? And, what was most helpful about it? #CSSMchat“
@megsnuggets “I started remission a few months ago. I’m a Stage 4 Ovarian Cancer Survivor. I’m just in the stage where I’m getting back to working out and the program I’m in is kickboxing and rock climbing. It’s important to choose something you enjoy and there’s so much out there #CSSMchat“
Jennifer M. Jones: “This is really important advice! Do what you enjoy! #CSSMchat
Jackie Bender ” I agree. It is very important to select an exercise activity that you enjoy. I think it would be great if the exercise guidelines for cancer survivors could be adapted or translated for a wide variety of exercises forms (e.g, kickboxing, climbing, yoga).”
Mary Beth Collins: “I’m still stuck at “Exercise programs and advice for people living with and beyond cancer are becoming more and more common. ” Didn’t even know that. Where does one even begin to learn more?”
Dr. Martin Stoermer: ” One final thing from me. My physio put me on to walking around empty shopping malls in the early morning before opening. There’s a few seniors walking groups in our local mall. Good for immune compromised folk too as minimal crowds to catch bugs from, and seats! #cssmchat“
The third topic was: “Are you worried about exercising safely? Have you received advice about safety with exercise? (good or bad advice…) #CSSMchat“
Emily McIntosh: ” Unfortunately, when I go too hard w/ cardio I get a headache & vomiting. That is unique to me, however, so I keep an eye on heart-rate while training and slow down if I need to. It hasn’t prevented me from doing anything and I would recommend exercise to everyone! #CSSMchat“
@realslimsheyla ” A3: My biggest concern was finding resources that 1) held me accountable 2) required me to be with a human 3) were catered to my needs specifically for military readiness while still being safe w/ my weak muscles and neuropathy. Still have yet to find anything lol #CSSMchat“
Sarah: ” A3. Raised this many times but no real advice given. I have #PelvicRadiationDisease and have had to guess/go it alone. Joined a gym and had to stop after 7 months (only gentle/moderate exercise) due to bone pain which no one can explain to me #cssmchat“
Dani Taylor: ” I think that there is exercise literacy, just as there are other types of literacy we discuss (health literacy, etc.). We treat movement like it’s obvious, but for many (myself included) it can be intimidating! #CSSMchat“
Our final topic was: “What is some advice that you can pass along to others who might say “I’m just not an exerciser”, but want to stay active? What advice did you get that supported you the most? #CSSMchat“
Shelby Waters, MPT: “Explain why it matters. The research behind prescriptive exercise is impressive enough to change minds on its own. Then support the patient in finding something they will enjoy, bc that exists for everyone! #CSSMchat“
@realslimsheyla: ” A4: Get. The. Caregivers. Involved. When doctors would tell me to exercise, I gave them death glares lol. But when it was my mom or my PCA harassing me, I tended to listen more. More or less, finding environments that are open for even just walking like malls is cool. #CSSMchat“
Heather Campbell: ” The exercise is treatment. You take your prescribed drugs for cancer, therefore you should take the prescribed exercise. Then celebrate on the day you’re okay to swim or go in a public pool. Public pools are basically human soup. #CSSMchat“
Rhea Crighton: “As a pain specialist nurse and someone whos had cancer I know how important it is to move and be active. Sometimes the word “exercise” scares people so I encourage people to just move and do more of whatever makes them feel good, great for body and mind! #motionislotion“
Allie Morse: ” Find what works for you. I never thought I would enjoy spin class, but I’ve found it to be easily adaptable depending on energy level (you set your own resistance) & I don’t need to worry about not always feeling my feet. #CSSMchat“
Thanks Cancer! “Even a walk around the block will help. Set a time, make a goal, and do SOMETHING! Here’s a podcast for our thoughts on cancer & exercise for those who don’t prefer the exercise of reading: #CSSMchat
Thank you to everyone who joined us for May’s #CSSMchat. We are currently in the process of scheduling June’s chat and will announce our facilitator as soon as possible.
Cancer Survivor Social Media 