Advocating for Exercise in Breast Cancer Groups
i just wanted to raise some awareness on an issue that has been bugging me and say something here. i have stopped participating in cancer groups because even though groups like this called "get active and keep well", the general fear and disapproval from other members is if someone starts exercising "more" than the generally accepted idea of what exercise is. anything more than that idea is frowned upon, and people have made me feel so angry and sad for sharing something that i am proud of and something that empowers me.
with this group and other ones for breast cancer, after i share information about doing some exercise and training after my surgery and after chemo, i have had comments that really shot me down and basically either flat out said that i need "a reality check", or alluding to the fact that the best thing that i can do right now is rest, NOT exercise, and some had attacked me saying that i am putting myself up to put her down (!!). some saying "i wouldnt do that if i were you". well guess what... they are not me. and i am not them. most of these types of comments i have found came from people who have not had the same powerlifting training as me. or from people who did not have an athletic or regular exercise routine at all prior to diagnosis. and these comments have not only hurt me, but made me feel angry and frustrated with the very little emotional energy i already do not have.
what i decide to do with my cancer experience is safe FOR ME. for example, women, let alone cancer survivors are fearful of anything to do with strength training. i will not go into the reasons for this and i will not go into the enormous benefits for strength training for women. but i'll give you an example. yesterday i went to the gym and felt great for it. amongst other things, i did 50kgs deadlift. now, if my best deadlift prior to diagnosis was 3 reps, 3 sets of 80kg deadlift prior to diagnosis, and i lifted 50kgs (3x2) nearly 2 months since recovering well from surgery with full range of motion, and 11 days after chemo, and assessing myself as i go, feeling fine and not really even puffed out, and not even sore the next 2 days, to me that means that it is safe for ME to do this. if i felt not ok before, during or after doing a 50kg deadlift 10 days after chemo i would stop. why would i stop doing something that is manageable?
for me manageable means something different than the next person who has had recovered from breast cancer surgery and 11 days out of the first chemo session. i trained nearly for around 9 months prior to diagnosis. 50kg deadlift would be a different story to a competitive powerlifter who can lift triple digits in kgs, and would be different again to someone who only did walking as exercise prior to diagnosis.
why are other people not to be trusted to their own intuitions and experience in something they already know? do we need to tell someone how to live their life? not usually. so why tell someone how to go through their cancer journey?
i have my surgeon and oncologist's approval and support for powerlifting before, during and after chemo, and i have the utter wonderful and strong support from the fitness community groups. why must i be told like an idiot that i am doing the wrong thing for my body? why tell me that i am not doing what i should be doing? with all the new realisations in the medical field that building stamina, strength and muscle can help to improve the lives of people with cancer even during treatment, and that these increases in fitness and muscle can trigger lots of previously unknown properties for the body to heal itself, generate more energy and stamina to better handle treatment, why is that exercise and strength training is so frowned upon by the standards of 30 years ago?
maybe we do not have that much information on the subject but at least what we do know 100% for sure is that even if you don't have cancer, and you did no exercise, and no resistance training, that your body will function very very differently than someone who does regular cardiovascular as well as strength training. you add muscle bone and energy killing chemotherapy on top of someone who doesn't exercise for months at a time, and you get far greater levels fatigue, far greater loss of strength and more difficulty regaining strength after treatment (and guess what helps combat loss of bone density, muscle mass and loss of energy? -strength training). i know that before my diagnosis if i do not exercise for 2 weeks i loose strength and stamina, i feel more fatigued and my lupus will take over and i will be more prone to simply staying in bed.
why do people like myself, other fitness pursuing women and athletes who had been diagnosed with breast cancer have to feel like we cannot be supported in a group like this and other groups that advocates exercise? i want to feel like people respect my decisions to do what i need and what i want with my life, especially because i feel ok and great after what i do in terms of exercise.
and i want to say to other women here who do exercise/athletic pursues, PLEASE share what you do for exercise! because the community needs to know that if someone knows their body, got doctors approval, and does exercise that makes them feel great not just physically, but mentally and that empowers them, that they should be celebrated! that they should be allowed to say and share and be proud of what they did especially whist going through cancer! you need to share your experience until it is normalised in our society.
i have been made to feel so angry and ashamed because i went back to the gym when i felt ok to, during MY cancer experience, and i do not want that for anyone else. i am excited to share this with you as a last note in a couple of links. thanks for those who read and are willing to understand.
https://soundcloud.com/abcnsw/resistance-training-benefits-breast-cancer-survivors
http://www.abc.net.au/catalyst/stories/4459555.htm <-- ABC catalyst documentary (chemo and exercise)
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0067579 <-- the exercise cancer killer cells research
https://www.researchgate.net/profile/Julie_Gehl/publication/294870149_Voluntary_Running_Suppresses_Tumor_Growth_through_Epinephrine-_and_IL-6-Dependent_NK_Cell_Mobilization_and_Redistribution/links/56e954d408aecf036b315403.pdf <-- how killer cells work on tumors 2016 research
Comments
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Wow! That's heavy! Good for you. I have to say that I had a double mastectomy dec 14 and it's been a long road. I have found. The blogs on this site really quite depressing to be honest which didn't help me at all. I have refrained from looking at this whole site for about a year and only feel strong enough to be somewhat involved now. I keep getting messages saying there have been 700 odd messages to read.... I applaud you for having the energy - wow go for it girl. It's refreshing to read and I mean that with no disrespect to anyone else who has posted. Each to their own!
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Hi Humbelvoice,
I hear your frustration. Thank you for your contribution to this group and I encourage you to continue sharing. Staying active and keeping well is a key focus at BCNA. If your medical team has given you the ok and your feel great doing what you're doing, we support you.
Ann-Marie xx
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Hi Karen,
I'm sorry to hear that. We are here to help you regardless even if its in the form of switching off the message notifications you are receiving. Just let me know if I can help you with that.
Ann-Marie
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Thanks for the post. Prior to diagnosis I had been going to the gym and personal trainer for about 8 months and was finally just starting to maybe enjoy the experience and seeing some results - I have always struggled with exercising. It's frustrating to know I am going to be back at the beginning again and going through all the hurt and I think (know) that I have been using all the experiences of others that gentle exercise is best to validate that it is OK to not go back to more intense training....then I read your post and realise it is just another excuse I have been using. As long as I am careful and listen to my body, it can only be beneficial to me.
I like that there is such a wide range of opinions on this site and hope you keep updating on your progress, will be interested to see how long its takes to get back to BC (before cancer).
All the best, Kari
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Hi Humble Voice,
Keep doing what you are doing - exercise is beneficial for us all and can only help us heal and stay well. Your standard is well above average, but it is right for you, and has your medical team's approval.
I am much older than you, but have exercised all my life and still go to the gym 6 days a week. I have just passed my 4 year check-up and my team is very pleased at my fitness level, and very encouraging to keep it up.
Perhaps the critics in your support group either can't do it or can't be bothered. Either way, they are hardly being a 'support'. Stay positive and ignore the negativity.
xxx Michelle
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Morning I have been a gym member for quite a few years. I had lost about 20 kilos and had become stronger in body and spirit. I wouldn't say I love exercise but I know how much better it makes me feel I have used the gym for stress relief and to improve my fitness I use a personal trainer so I'm guided and supported and I listen to my body. My issue has always been my motivation and my cancer trip has put a big chunk in that. I have just returned to the gym and was just getting back in to it and now I have hurt my knee ( work related) and it is so hard not to be able to walk. Exercise, any is good for you and we all differ in at what level we can and want to do.. Good luck with your return to exercise xx
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Hi Humblevoice
Thanks for sharing your feelings so openly. Glad you are recovering so well from your treatment. Regaining physical fitness and strength is a huge goal to achieve. Well done!
Like you, I enjoy exercising and have learnt to set realistic expectations for myself especially during my breast cancer experiences. It's a big priority in my life and I have learnt that what works for each of us is different.
I also know that it can be both challenging and rewarding to be part of any breast cancer support group (whether it's face-to-face or online) - to find your voice and be heard! Having a group leader who reinforces respect and support for each other makes a big difference.
We're all working through our vulnerabilities, our "ups and downs", and healing, in so many ways - so I try to be less reactive (and more forgiving) to what I feel are hurtful and unhelpful comments. Letting go of the negative stuff isn't always easy for me - but it's definitely empowering!
Wishing you the best with your fitness, health and happiness.
Di
PS Having just turned 60 - and just finished 45km ultramarathon in a personal best time! - I'm celebrating life! Lots more to look forward to!
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You are an inspiration to me. Exercise to me was powerwalking with a protruding disc in my back i have always been limited in what i could do. Now i have hurt my hip and cant walk...its killing me But looking for alternatives. Keep doing what your doing as say stuff em to any critics!
Maryrose
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Hi Humblevoice,
I too enjoyed exercise, including weight training at the gym, for many years before my cancer diagnosis. During chemo and after surgery, the most I could manage was a daily walk and even that was a huge effort, but it made me feel better. A week after my last chemo round, I was back at the gym, and now, 2 years on, I am back to doing nearly as much as before the diagnosis and treatment. Mind you, I am now 58 yrs so have to contend with ageing effects as well! I love it that you are challenging your body and it is responding positively!! Keep going and ensure you keep strong - it not only helps physically, but psychologically as well. The doubters and critics are only voicing their own insecurities and if you have never been working out at the level you had, it is hard to understand the empowerment. So, there are many of us out there doing just what you are - although maybe not at your level - that are cheering you on.
Take care,
Alison
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Well said! I too have been bombarded by the "take it easy" and "listen to your body" messages (not here but every where). I've continued to workout daily throughout the last six months of chemo. It's been a lifesaver for me. Physically and mentally.
My Oncologist told me at our first meeting "you are not sick, you are not a sick person, you just have to go through this difficult treatment. Keep doing the things you normally do, the things that make you you. When people tell you to take it easy, don't listen." Sadly, the chemo nurses did not get the message. I was constantly asked about my workouts and advised to "cut back and be careful". I felt like i was judged adversely as a result of my resolve to continue my workouts.
Even as my blood counts looked very bad toward the end of treatment, I was able to ride my spin bike for an hour each day. I did have to cut back on weights and HIIT as my HB dropped but I never stopped. It helped with my fatigue and certainly helped me keep a part of me.
Good for you for doing all you can. It truly is good for you and good for your long term health.
Lift away my friend!
All the very best to you through this difficult time.
Y
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Go you !
I am a runner & bikram yoga girl,
i love love love it ????
It makes me happy, feel strong, powerful & smile !
I ran 9 days or so after my lumpectomy. Slow but felt great !
I am on the starter blocks again now my radiation has just finished,
just have to heal my burns, then watch me go, baby ! Lol !
Glad there's another fitness freak out there ?? Lol
??????????
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Hi Humblevoice,
Thankyou for sharing your frustrations here. At BCNA we encourage all women to stay active and keep well throughout all stages of their life. If you have spoken with your medical team and the exercise you are doing is making you feel good, than I think its great. Well done for keep active and keep doing what you're doing, if you continue to see and feel the positive impacts.
Warm Regards,
Fiona_BCNA
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Hi Maryrose,
Have you tried hydrotherapy or swimming? It's generally good for people with back issues.
Sarah
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After my bilateral mastectomy and revonstruction & 1st session of AC chemo I was ecstatic to manage a swim, 2 hydro workouts and a cardio gym session and a light weight workout. My physio though advised to hold off the weights until 12 weeks to just ensure all was better healed. Unfortunately since that wonderful week I have been incapable of doing any of this since. Round 2 of AC sucked out all my energy. I barely left the house or my chair. Round 3 was a little better but had my infusaport inserted so avoided the pool and wasn't quite up to the gym. Round 4....well I'm recovering quicker and have managed to get hold of a treadmill and plan to be getting on that on and off to improve my cardio again so I can return to the gym whilst I enter 12 weeks of taxol. Yes we are all different...but do prepared you may not feel good all the way through your chemo. I hope you do. I know I have had to keep reducing my expectations but have yet to give up. But sometimes you might just beed to rest...but that will be your choice. Best of luck. Kath x
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I love hearing that someone else is so invested in exercise and is actually getting back into it! Seems like you're quite justified in your opinion, especially if you watched Catalyst on Tuesday.
I too was a bit of a gym junkie before this. I had started power lifting, not quite up to 80kg deadlifts, but I was doing 80kg squats! Anyway, as soon as I was physically able to, I returned to the gym. Unfortunately though, I developed cording after the axillary clearance almost immediately after surgery. I find now that if I try to lift even a small amount of weight, the entire lymph system from my wrist to my chest wall tightens up. This frustrates me no end! I miss my muscles! Anyway, I've had 3 rounds of TCH chemo so far and I manage to get back to the gym on Day 6 post treatment. All I can handle that first day is 20 minutes of a Step class. It takes me a whole week to work up to being able to finish a class. I'll hit the gym 4 or 5 times a week & do whatever leg resistance exercises I can come up with if I'm not doing a Step or CX class or running on the treadmill. Wish I could do more, but the arm limits me so much. I'm jealous that you're still able to lift 50kg (I used to chest press that??)
Keep it up!!!
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