cheers to the lymphoedema gang

[Cackles]

Norberte......not just ice cream , chocolate truffles, eclairs, cake, brownies in large quantities. Washed down with the drink of your choice.
Sorry the cellulitis is still with you.
Cackles

[Guest user]

glad to hear things are calming down, daisy girl, & there's no 'hierarchy of suffering' in the lymphoedema gang, we're all in it together - i guess we all read some posts & think 'poor cow, how does she cope?' & then v occasionally come across one & think 'i know a spot on your nose isn't nice, but in the greater scheme of things ...'
but fact is we've all got ld, no-one asked if we wanted it & it's a complete ****er, needs more managing than a small toddler
which is why we've got here to come & have a good moan & get cyber-hugs & good ideas - after all, we're pretty much the ld experts between us, as well
now, anyone got any ideas for when the cellulitis is being stubborn? i've been on big lots of augmentin (& therefore mostly asleep) for 2 weeks & the rash is fading but the bruised feeling's still there & i'm still spiking quite ridiculous temperatures
gp reckons another 3 weeks at least of antibi's - but wouldn't i be right in thinking that i should be eating lots of icecream???
despite feeling sh*t, it is lovely having a break from all the compression palaver though - how sad is that??

[Guest user]

Hi Chinook

As you say more grey than black, and mine has been mistaken for a tattoo as well. I only wear it on high days and holidays. I persuaded my chemist to make up my last prescription with black sleeves and I definately prefer them to the strange 'flesh colour'

Andie

[Guest user]

Hi AndieT
Iv e had the black lace one for a year. I don't wear it very much as I keep it for tidy. I have been thrilled with it. It isn't quite as black as you expect (I did worry it might be a bit Anne Summers). People always semm to ask about it and it has been mistaken for a full arm tattoo often.
I do hope you like yours.
Regards Chinook

[DaisyGirl]

Thanks Norberte! I am much better now, the anti viral stuff gave it short shift and stopped it spreading and once I had finished taking it I stopped feeling drowsy and went back to work. I have now agreed on a 4 day week 09:30 to 16:30 so I don’t get so tired, so not all bad!

I am so fed up with my LD arm, although the swelling is very slight I always know it is there because of the sleeve but if I leave it off the swelling soon increases, and I get this aching a bit like cording from time to time. I know I am lucky compared to you and you would probably swop with me in a jiff but I hope you don’t mind me having a bit of a moan to someone who understands!

Anyway, thanks again and I hope you are OK!

Daisy xx

[Guest user]

oooh, daisygirl, that sounds painful
& just as you're so close to the full-time goal, too
no idea about the sld, but i think the general rule is: if in doubt, don't fo it
one for your ld nurses or the bcc helpline, i think - i used the 'ask a nurse' email lasy week (thanks cackles!) & a bcc nurse who's v experienced about ld phoned me back the nex day with some good ideas
meanwhile, does good old fashioned calamine lotion still exist? great for itching
hope you can get some reassurance from the experts & the shingles behaves itself & bu**ers off soon

[DaisyGirl]

Hi Gang!

Not been around for a while as life is back on track post treatment and I am now doing only 5hrs short of full time each week now!

However, today I have been told that the nasty rash I have on WLE boob and on my back are almost certainly shingles 😞 Although the rash is itchy (particularly on my back) I am not in any pain as yet, they seemed to think this may be down to the nerve damage following my op and that this was a good thing!

Anyway, my question is, do I need to be concerned about this spreading to my LD arm and is it OK to do SLD or will that spread the virus?

Any thoughts would be most welcome!

[elinda45]

Bumping this up as I was wondering if those with truncal or breast lymphodema have more specific clothing wants.

Elinda xx

[elinda45]

Hello wonderful lymphoedema gang!

I wanted to bring to your attention a thread started by Bubbletrouble called 'Your input wanted! Fashionable clothes for women with BC'

This does include what us women with lymphodema have in terms of clothing needs. One that strikes me straight away is sleeves in shirts etc that aren't so tight and can accommodate swollen arms and/or compression sleeves.

Please if you can spare a moment, would you respond to Bubbletrouble's thread.
Have a great weekend all, Elinda x

[Guest user]

Well done Andie! I will look forward to seeing the photo too. I know these things are expensive, but you really are worth it!!!! xx

[Guest user]

JEALOOOOOOOOOOOUS ! I want one ! I want one ! Hmm had a good day on the cake stall today, ah that's justification enough, I'm away to have another look at the site.

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Aided and abeted by the gang members I have placed an order for my lymphadiva sleeve. When it came to the difficult decision, which one to have, I smiled to myself as I ordered the black lace looking one. In honour of all your help I may have to wear it with a red ribbon bracelet! What this space for a photo.

Thanks for all your input

Andie

[Guest user]

Hi andie
I talked my OH into the black lace sleeve from lymphadiva for my birthday. He tried very hard to find the same thing over here so he didn.t have to pay the tax and import duty!!!!!!!. I did worry it might look a bit Anne Summers but its more grey than black and looks pretty good. A great talking point as it looks a bit like I've had a full arm tattoo. I keep it for best. Courses and meetings at work. I teach so find the black ones most practical. The skin ones look grubby after about 5minutes using a white board. I'm lucky I manage the swelling pretty well and don't have to wear sleeve ALL the time.
It is starting to fade a bit, so ready for a new one. Might ask my children to club together for next one for Xmas.
Definitley worth making an effort to get one.
Good luck
Chinook.

[Guest user]

I think you should go for it too Andie! You are worth it! xxx

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[Guest user]

The laughter is for your psychological well-being then, glad to raise a smile and I certainly didn't mean to insult anyone's personal choice. What does my fashion adviser from a new generation know anyway!! Too much skin, altogether waaay too much pink, I think Terry Pratchet did one on that.

And seasoned OH's rock, you are very lucky!

[elinda45]

Ah yes, but you do need for your psychological well-being. Whatever this wretched disease has done to us, we're still women and we need to express that at times.

Go for it! Say you need a sleeve for best. Elinda x

[Guest user]

You really make me laugh. I am a lady of senior years and my days of red ribbon and black lace are but a distant memory. Poor old OH could have a heart attack if that became my attire of choice.

To be fair OH is a star amongst men and he would buy me the moon if he could. It's more a case of my guilty conscience about buying something that I would like but don't need.

We'll see

[Guest user]

Andie your OH needs to see it as part of the overall effect; it's to go with the rest of the pretty lacy gear, right? Or is he just totally happy with the black lace... red ribbons are quite cheap...
Of coures if the rest of your intimate style is normally biking leathers, or denim overalls, I can see he might have some adjusting to do. Gonna stop right now befoe I incriminate myself LOL (or expose too much of my ignorance)

Edit: Sorry, correction, I've just been told it's nothing to do with Valentine's day being six months away, that red ribbons with black lace just are cheap and tacky, period. Well I didn't know, sorry! I'm from the denim or plain white cotton brigade, with nobody but myself to please...

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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

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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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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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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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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

[Guest user]

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

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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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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.

[Guest user]

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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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!

[Lucy_BCC]

Hi all

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

http://www.breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/...

Take care
Lucy

[Guest user]

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

[Guest user]

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

[Guest user]

Hi gang
Thanks for your welcoming words, much appreciated. Not having a good day today, my arm feels huge, and achey. Have had a busy, social, fun filled weekend, but never had this reaction before. Have done the SLD but still very swollen. Will give it another go after work, and make sure I don't do dinner or wash up! Obviously I need to rest a lot!
Also had a look at lymphediva website, and it is quite fabulous, but I wear a gauntlet (I think - arm and hand?) and there were none of those. But maybe there's a market that needs tapping!

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Hi Gang.
If you are feeling flush and you fancy something posh, check out the lymphadiva web site. I got a sleeve and glove which works well and looks like I've had a full arm tattoo of grey lace pattern. Total cost was about £120 but that includes import duty and tax. I keep it for days I need to cheer myself up or need to look a bit tidier. I find the normal ones can get to look grubby, even when you know they are not. I know it's alot but I got it as a birthday pressie.
Regards
Chinook.

[Guest user]

Welcome to the party, Shirtette! I'm really quite scared of most dogs so it's good to associate the sleeve with a protective function - thank you for that idea! (after-thought: the sturdy nylon won't do much to stop sharp teeth, but the yucky colour would probably put them right off; except that I heard most dogs are colour blind.)

[Guest user]

Hi all

Can I join your gang? I developed lymphoedema in Aug 2010, two years after the breast cancer diagnosis, and like others on here, probably was more upset about the LD than the cancer, bizarrely!

I had complex decongestive therapy earlier this year which was a great success, although the bandaging did make me look like I was training police attack dogs! So from being 27% bigger than my good arm, with treatment, SLD, the sleeve and swimming my arm is now (at the last measurement) 12.8% bigger. Result. And I hope it will continue to improve.

The LD nurses are fantastic, and have answered all my questions and queries with understanding and sensitivity. They have also supported me psychologically, which was perhaps a bit lacking with the cancer treatment.

I've never seen anyone else wearing a sleeve, not even when I've been for my appointments so was convinced it was just me! So it is good to 'meet' others in a similar position.

Anyway, for now, thanks for being here, feeling better already!

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[DaisyGirl]

Hi Hymil - you have summed it up so well, I am still in the early days of LD and finding it very hard to accept

Hi Emmbee - thank you for offering some hope, I can't start the massage until I have finished treatment but it is good to know that it is possible to live life without the dreaded sleeve!

Although this is not a gang I would choose to qualify to belong to, the members are great!!

DaisyGirl xx

[Guest user]

Hey Elinda, that's great news that you can go without your sleeve some days. I could not wear a sleeve because it caused awful irritation so I have to stick to my exercises and massage every day. My LD is not as bad as it was at first and my LD specialist said that in many people it does tend to reduce.

I once met a woman wearing a sleeve. I did not say anything but my friend did. The woman said that it had become part of her life. OMG she looked so miserable that I thought 'what kind of a life is that' and, she was on holiday at the time.

Keep up the exercises and massage and show that lymph who is in charge.

E

[elinda45]

Hi Maisie

sorry to hear that you're feeling about low about the lymphodema.

I was devastated when I got lymphodema, it was something that I dreaded happening. It seemed like enough to have got through the cancer treatment and then to have that as well.

I'm more used to wearing the sleeve and have got different clothes so it's not on show that much. I was amazed when one of my neighbours said she'd never noticed until that day and I'd been wearing my sleeve for 8 months by then!

By wearing the sleeve every day, I have now got my lymphodema arm back to being smaller than my other arm (which is the dominant one). I also do the self lymph drainage and the exercises each day.
My lymphodema nurse says I can have days now where I don't wear the sleeve. I've done this without any problems. So I hope you may find that encouraging.

take care, Elinda x