Hi guys!
I’m new here, I finished chemo and radiation in May last year and by the end of the year I had won the lymphodema lottery. I wish it would have been the actual lottery but I had forgotten to buy a ticket (menopause fog brain, am I right!) this as well as other issues following treatment have meant I’ve not been able to return to work so money is tight and this is where I finally arrive at the point of this post:
I’ve been on the waiting list for the lymphodema team since December. I’m doing all I can with going for walks (I have a limp and a stick figure like walk now, it’s very attractive to say the least) not lifting heavy stuff, wearing tight-ish leggings, long (not too hot) baths with epsom salts and massaging the living crap out of my thighs every evening because they are soooo veeery sore. I even spent more money than I should have earlier on these massage thingys you put over your tighs. They arrive Sunday, and I’m way too excited. Is anyone here struggling with lymphodema in the tights/calfs/legs and has experience with wrapping? I’m wanting to try it but buying ready made ones is way expensive so I’m looking into some home made techniques. Would just be good to hear from someone else because being a 34 year old menopausal woman with swollen legs feels a tad lonly if I’m being honest.
Hi Bee and welcome to our group.
I’m so sorry to hear of your lymphodema issues, which sound very unpleasant to deal with. I hope you don’t have to wait too long to see the team, and I believe they can offer lots of help and guidance when you do see them. I was very fortunate in not suffering from this, but know a number of ladies who had this after treatment. They have always stressed the importance of seeing the professionals to be sure of using the right massage techniques etc.
You mention you have other issues post treatment-are you getting help with whatever they are? Sometimes you just have to keep speaking up to get the help you need, but don’t suffer in silence.
I haven’t seen anyone bring up the topic recently, but it doesn’t mean there won’t be someone who has got some experience who will come along with some advice.
You are very welcome to be here with us, and please feel free to add to the chat and get to know us. We have a nice bunch of ladies here, so please don’t feel alone with any of your issues. xx
Hi Sarah! Thanks for your reply and kind words.
I know the wise move would be to wait to see the lymphodema team but I feel like I can’t just sit in pain and watch my legs double in size, you know? I spoke to my gp and she said it was probably fine to try wrapping, but the gp’s aren’t really knowledgeable when it comes to lymphodema.
I’ve also been on the waiting list for the menopause clinic since October last year, the hrt I’m on isn’t cutting it. My oncology team have done bloods which are normal so they’re pretty sure the fatigue, aches and pain and all the rest of it is due to hormonal stuff. I have an mri coming up but my team are optimistic that I’m still cancer free so 
I guess I’m just frustrated because I was hoping to do this treatment and then bounce back to my normal old self but that’s not gonna happen. I’m also seeing a therapist at Maggies and highly recommend that for anyone in my shoes, she’s been a life saver!
Glad to have joined and looking forward to getting to know you guys, get advice and hopefully be able to share some helpful advice from my experience too. Xx
Hi Bee
Good to see you again! I would agree that the gps maybe don’t have enough experience with this, but I can understand you wanting to get it sorted out and some therapy to help. That’s a long time to be waiting for the hrt clinic- everything seems to take so long these days and it’s very frustrating. It probably is all hormonal but it will be good to get a review of your current medication and see if they can help with anything else.
Would you like to add something to your profile so that other ladies can see your story? It’s helpful for the other ladies to see what treatment you’ve had, stage of cancer and how you’ve done and it does save repeating yourself if anyone asks questions. I think we all assume we’ll bounce back to “normal” life after treatment, but the reality can be very different. I’m so glad you’ve found it helpful to see the therapist at a Maggie’s. Our nearest one is too far away for me to get to.
However, I was able to access counselling via MacMillan through my CNS, and that was hugely helpful. He was such a lovely guy, and we had a number of phone appointments which really helped get me out of a bit of a black hole. I think I cried on every call, but we also laughed and I really felt that he cared. I honestly can’t speak highly enough of seeking help when you need to, as it improved things massively for me.
Sarah xx
Good shout about my bio I hadn’t realised you could have those and check out other peoples. Just read yours, adenocarsinoma sister here 
