cheers to the lymphoedema gang

Public Archive
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Hi gang

This LD is new to me this year, so bear with me if this a silly question. Does the LD swelling get worse in the hot weather. My sleeve has felt tighter than usual these last few hot days.

Thanks
Andie

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G’day Guys! Can I join the ‘gang’ too? It will be nice to chat to people who understand what it feels like to have LD. You are so right about others not understanding.

I have only just finished my treatment for BC and I got my lymphodema after my surgery. It has now become worse as the radiation from the radiotherapy has attacked and damaged the nerves in my arm and I can not move it without excruciating pain. It is making the Ld worse as I cant do the exercises or massage. After what I have been through this last year with all the side effects etc, I feel like a hyperchondriac having even more problems. Does anyone else feel like that? I sort of feel cross that I have done everything that they told me to do and yet it still happened & I am sure I wasn’t told about the possible nerve damage when I consented to the treatment?

I was having a pity party for a few days, but now, I am getting on with only being able to use one hand for things. I am grateful that I am alive, hopefully cancer free and that I can laugh and watch my children grow up. I can still do a lot of things one handed. It will take at least another 12 months for the nerves to repair themselves, so I can either choose to feel sorry for myself, or just get on with it. Some times I have days when it is harder to get on with it, but we all have good and bad days hey?

Sending one handed hugs to all of you guys in the LD gang,

Lone xxx

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Hi all

I am posting a link to the BCC publication ‘Living with lymphoedema after breast cancer’ which you may find helpful:

breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/*/changeTemplate/PublicationDisplay/publicationId/16/

Take care
Lucy

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Hot weather makes it worse, Yes definitely Andie. Drink lots of water or weak squash, not salty stuff (lemonade not crisps!)then the lymph will be runnier and easier to get it moving out of your arm and back into central circulation. Rest more and remember, this being in the UK, this too will pass!

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Hi Kulakatz
Sorry to hear that you have LD too! The nerve damage must make life hard aswell. Will pm you if you fancy a meet up, am your way quite often!

Jackie R(from STARS)

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G’day and welcome Kulukatz. Loved your post, we are so hard on ourselves sometimes, survived cancer and already calling yourself a hypochondriac… be as kind to yourself as you would like everyone else to be, and as you no doubt are to others in pain around you.

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Thanks guys for welcoming me. You are all so kind.

I have been put on some gabapentin to help the nerves and some painkillers similar to what I was on post mastectomy.

My lymphodema nurse can’t really help at the moment until my nerve pain is under control and of course the bad news is… when you don’t move your lymphodema arm it swells more… so it is a bit of a double whammy.

The physio is trying to help me too but they are limited because of my pain. Apparently there are not many of us that get this brachial plexopathy post rads and so they don’t put it on the consent form when you sign up for rads.

I think lymphodema is hard enough to put up with for us all, and so this was a real shock to me. I was stunned like when I was told about the cancer. The long period of recovery for my arm (12mths plus rehab), hit me like a truck.

My plans to pack up the cancer and put it in a box on the shelf and try to forget about it have been blown out of the water.

My young kids keep asking me when I am going to be better. It has nearly been a year since my diagnosis in September. My youngest who is just 7 said he knows when I will be better and it is when he can run and jump into my arms for a hug. Bless him.

I have to wear a sling at the moment. I have so much difficulty with daily things like getting dressed, doing make up and hair, cooking, cleaning and moving things, bending down to the floor to pick things up with my good hand as all these things can cause the most excruciating pain in my shoulder and upper arm. I have a numb thumb and pins and needles all up my arm. Somedays it is really tough to remain positive, but I am determined to keep my chin up and just get on with life one handed as best I can.

Of course having this disability makes it hard to find a job after time off for cancer and treatment hey? I have been trying to think of what I can do with one hand for work? any suggestions?

I am Australian and therefore not entitled to benefits, so things are tough with no money coming in and I need to get some work.

Does anyone know about driving restrictions over here? Will our car insurance still cover us for lymphodema etc? Has anyone needed to get there car adapted? Where did you go for help?

I take my hat off to all you guys in the lymphodema gang! It is tough out there with all the comments about the sleeves etc on top of the fact that we have been battling cancer. Big hugs to you all girls! Lotsa love, Lone xxx

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Lone I love that big shiny smiley star. Wow what a bummer that sounds like :frowning: There is more information on radiation induced brachial plexopathy here and you might find other sufferers with experience or tips to help you: community.breastcancer.org/forum/64/topic/698235

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Thank you Norberte. You did make me laugh! Thanks for all the helpful information you and hymil sent too.

I am up to 8 gabapentin out of a possible 12 tablets per day, but still not getting anywhere with the pain… So I may take your advice about the pain clinic if it doesn’t work.

I have thought of some other jobs that I can do: Be a royal waver, someone who points which way to go when you enter a posh establishment or museum or a maybe I could get a job at auction where you have to put up one arm to bid? What do you think?

Thanks for my shiny star as well. he he.

One handed hugs to you all.

Lone x

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Bless you Norberte cause you are still using daggy wrong. he he. At least you made me laugh again.

I stayed overnight with the kids in Bournemouth and it was brilliant. Having a sandy beach (instead of the pebbled one in Bognor) was lovely and kinda reminded me of home.

Keep up the ideas for the one handed jobs matey… we are bound to find one that suits.

How is everyone else going?

Lotsa love, Lone x

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LOL!

How about those special nods and waves, the guys doing the gambling at the races make a load of dosh… or maybe working in a second hand shop?

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Thanks guys for cheering me up. I thought that when I was on chemo I was on an emotional roller coaster, but these days I can have a few tears at really random moments. Hope the rest of you are ok?
Lone x

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Snap - I just bought myself a black sleeve and mitten, Useless piece of information. When I wanted to buy an extra sleeve a little while ago my chemist who filled my NHS prescription charged me £62 just for the one sleeve, and refused to allow them VAT free. After some research on the web I have just bought 2 sleeves, signed the VAT exemtpion form and paid £78 for 2.

Now I am trying to justify to OH why I would really like a pretty lymphadiva one from america