I deliberated about this a lot post surgery and realised that for me this was one of those quality of life issues that hurt so much I really couldn’t think about it without crying hard… here’s why.
Having had bilateral mastectomy there is no good arm, just 2 affected ones (they can’t replace them with fakes sadly 
I live in a mountainous area and like to go walking. Most of the places I love involve a little scrambling over boulders and that kind of thing and this means being able to haul your body up, ie pull your body weight on your arms and legs. The idea of not being able to go to those places again really upset me and I decided that I was not prepared to accept this. Even though I had surgery on both sides I did only have a sampling of nodes which were clear so I got to keep the rest of them so some saving grace there.
So I started exercising and gently asking a tiny bit more of each arm each day and am continuing to do that. I don’t do things that cause too much strain but I don’t let either arm off either. I can’t pull my whole body weight up yet and don’t expect to easily. I have found I can scramble taking it very easy and looking for easier ways up and over rather than throwing myself around but the idea is that if I ever need to haul myself up (and on the side of a mountain a need can be very real LOL) I can.
I have rearranged the kitchen so light things are higher and heavy things on the sideboard. I do use the food mixer to do repetitive things now, and not apologise for the washing up it creates
But honestly how are you supposed to function if both arms are at risk? I think the build strength slowly and maybe lift some things with both hands to distribute weight are the only way to go.
I’m 4 months post surgery and do get twinges of pain in the armpit but am slowly getting strong again.
I have accepted that the climbing wall is probably out now for a while 
thanks Crispy for the information you posted - it will be very useful.
Vertangie - I agree that if you have bi-lateral it must be a nightmare.
I’ve sort of decided that I have a life to live and live it I am going to … fair enuff I am doing some things a little bit differently to how I did them before. I’m also trying to be sensible … but clearly my idea of a sensible weight and their idea of a sensible weight don’t match, so I am going to have to modify my level of sensibleness.
Vertangie and lilac - you are right - bilateral is a nightmare, but hey, one’s no fun either, is it?
I get so angry some days about it (and today’s one of them - but something else has set it off!) - and the ‘you’ll just have to live with it’ attitude from much of the medical profession. I try to lead as full and active a life as I can, but occasionally something will really get me down. This weekend it was a friend who came round in a thin strappy top - something I’ll never wear again, looking all summery, sitting in the sun, soaking up the beams - something I’ll never do again. Sorry to be so negative - I usually try to be upbeat and occasionally humorous about the ‘fat arm’ issue, but today, no, no, sorry everyone, it’s escaped me.
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PS Thank goodness there are a few advances being made, but progress is so pitifully slow.
Heya Bahons2.
I know what you mean. I do find myself wanting to say “You ****y live with it” to the team sometimes, especially when my arms are killing me from the epi (poor little veins). I know they’re trying to be helpful and I’m grateful for all the care I’m getting but I am reaching the point where I just don’t want any more “advice”. Just don’t want to hear it for a while. I’m lucky that I don’t have lymphoedema yet though so I won’t complain about that.
Don’t blame you being totally fed up with it. I think we should ask our friends to cover up for solidarity 
You never know, they may find a way to control it and you can wear that strappy top again. Failing that learn photoshop and you can make yourself look however you want in pictures at least. It’s not the same though I know.
Hi Vertangie - thanks for the support.
(“You ****y live with it” is right. They should make people wear lymphoedema arm ‘simulators’ for a few weeks to teach 'em a bit more empathy)
Have just been out for a walk and feel marginally better. Just need something to kick to pieces and I’ll be right as rain (ha-ha).
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The advice is so conflicting regarding lymphodema. After op my bcn said no lifting weights, heavy shopping. That was the last I heard. Then I went on a course at hospital where we were told to continue doing exercises for two years after radiotherapy. I had to have all lymph nodes removed - 21 in all. Was told 15% risk which rises to 40% with radiotherapy. Then told by someone else that is only if you have radiotherapy to armpit which highly unlikely after mastectomy which I also had.
Then the other week I went on a course held locally organised by Breast Cancer Care where we were told that we could do everything we did before. Even up shopping in both arms. Lack of use is likely to cause it. Can lift weights again - building up if did before. Didnt seem to think massage was important which again conflicts with other advice I was given.
It is all sooo confusing. I keep a plastic jug by kettle and fill it from that but generally only for a maximum of 2 cups otherwise I lift with left arm - right arm affected. I have stopped buying 6 pint bottles of milk as couldnt lift. Bought a lighter ironing board to put up - well the last one was 30 years old!!!
But advice is that after 2 weeks in hospital and 2 ops arm will get weaker with just that. Pilates was reckoned to be better than yoga. Press ups could be done again. All very confusing.
Hi ladies
Have read this thread with interest as I have had bilateral mx just finished radio. My right arm is the dominant one and that is fortunately not the one where I had total lymph removal.
Some of my chest muscle has also been taken on the left side and this has restricted arm movement but I am having weekly physio. I know that if you do not use mucles they waste very quickly and there is a vicious circle, if you don’t use the arm you maybe protecting yourself from lymphoedema and if you do use the arm you may be putting yourself at risk.
As my sister suffered badly with this after bc, I feel vulnerable even though it doesn’t work like that.
It’s bad enough having to get your head around the bc, let alone lmyphoedema!
Dawnflower
Hi all - have been following this debate for the last day or so…
It’s difficult - how much exercise is too much - or too little? Ditto ‘heavy’. I too was advised as some others here were, ie do as much as your arm feels comfortable with.
I’ve had a dig around my little lymphoedema bible from Oz and it says that, apparently, when you are carrying anything (even lightweight objects) the skeletal muscles are in a state of contraction, which CAN prevent lymph fluid getting into the lymph vessels because it (the skeletal contraction) prevents the lymph vessels from pumping normally and moving lymph fluid around. And if your lymphatic system is compromised, then swelling could result or be worsened.
I suppose we can infer from that that it is less bad for us to quickly pick up something heavy and put it down again (so that the skeletal muscles are only briefly, if strongly, contracted) than to carry something much lighter for longer??? I think my personal experience would back this up to some extent. Anyone else?