Hello FixBiz sorry to hear about the lymphodemia. I too had axiliary clearance 22 nodes - and all clear. On the one hand I was obviously pleased that the nodes were clear but I am furious at this brutal gung ho approach to clearance. I have had a dozen operations in my long life and this is by far the most painful and it has so many potential problems. I also asked about SNB but it was only available on an ad hoc basis.
Re the serous formation under the axilla and around the breast I just bound myself up tightly with a big crepe bandage - I was damned if I was going to have to go for drainage every so often. There was well over 120 mls drainage right up until the axilliary drains came out but the binding worked. But that feeling of fluid being there is still uncomfortable but now it’s just nerve endings playing tricks.
I daren’t look again at your original post in case I lose this! But I do hope you get the help you need. It’s a good thing so many of us have a bolshie side - sometimes that’s the only way to get through all the problems.
Good wishes to you all
Hi Fixbiz,
Sorry to hear about your arm. I felt exactly the same about my hand, when I developed lymphoedema while I was still having rads. I felt that if I was going to get lymphoedema, at least it could have done the decent thing and waited a while so I could have a period of time being well again without complications. And being in my right hand, I can’t cover it up with clothes, and I am right handed…
Also, I found out all the information I could about prevention and followed every bit of advice I could find, which I felt was some thing that I did on my own initiative as there is very little information given out by the medical staff. But no-one told me about moisturising the arm with upward strokes - this is to encourage the lymph fluid to flow up the arm. I was told to do this at the lymphoedema clinic. If I had known this, maybe it wouldn’t have developed.
However, having said all that, my lymphoedema is very much under control now. I have a compression glove which I wear doing any physical jobs at home (cooking, gardening) but not otherwise. I was concerned about the ‘no repeptitive movements’ instruction as I swim regularly, but I still do my 50 lengths, but now I try to put a length of breast stroke in every few lengths rather than doing all crawl. I do arm exercises every day, and follow all the usual precautions. I have tubes of antiseptic everywhere (home, work, car, handbag) so I can treat any cut or bite straight away, and I have a box of antibiotics from the doctor to take on holiday just in case of infection while away.
I have taught myself to use my left hand a lot more (eg ironing) and don’t lift any heavy weights, but other than that life is pretty normal.
Please don’t despair. Hopefully your lymphoedema will settle down with correct treatment, and you won’t feel so bad about it.
But I do feel that the information we are given following surgery is simply inadequate.
I don’t think anyone should feel guilty about developing lymphoedema and whether something they did or didn’t do would have made a difference. It’s a cruel lottery. Some people take every known precaution and still get it and others do nothing to help themselves and never get a single problem. The way I understand it, lymphoedema remains very imperfectly understood, with only some of the risk factors identified and individual susceptibilty a particularly grey area.
I do agree that the info’ supplied following surgery is pitiful. I think healthcare staff still ‘cross their fingers and hope for the best’ - a legacy from the days when even less was known about it than now and treatment was almost non-existent. I think, sadly, it also boils down to money. In my ideal world, we’d be all issued with a sleeve prophylactically to wear when gardening, shopping, flying, exercising, whatever, to help our vulnerable lymphatics cope with the temporary extra load; this would have, more than anything else, I believe, gone a long, long way in preventing problems from arising.
It’s sad, because compression sleeves aren’t particularly expensive and if we’d all had one to pop on when necessary, we might have all been spared a lot of grief!
What an excellent idea.
Fiz,
I am so sorry to hear you have another hurdle, it is so unfair. I am very cross that you were not made fully aware of the consequences so That they have taken away your choice. Some people choose to carry on normally and others don’t but the very least we expect is to be able to make the choice based on correct information. This is what I was told (and I only had sentinel node biopsy with just one node removed so about as minimal as it gets) that I would always have to take care of that arm now. I should treat any dry skin and to have antiseptic with me to put on even the smallest of cuts immediately and cover. To actively avoid scratches by gardening, branches or animals, or to keep my arm covered to protect it. It was no to mowing, especially hovers with the vibrations, not to lift heavy things or even iron or hoover with that arm for long. The other thing was to not use a razor to shave any body part any more, so have a totally ineffective battery one now. Anyway it is just a list for you to check against to help you identify anything that might have caused it.
Good luck I hope it improves
Hugs
Lily x
Hi again,
a friend of mine who got lymphoedema straight away after surgery is campaigning the makers of the sleeves to provide them in other shades, so it would provide a better choice for different skin tones. You may like to help this along by contacting them yourself as numbers would add weight to the argument. If they think they will make money they will hopefully decide to look into superior looking products or at least offer more choice.
Lily x
That’s a good point, Lily.
I haven’t found what’s on offer to be much of a match for my skin - in fact some of the so-called ‘skin tones’ are anything but. I was actually offered some made by one of the well-known compression garment manufacturers that were the colour (and texture) of a McVitie’s Ginger Nut. Refused them. One of their reps told me that, although they make compression stockings (for people with lymphoedema legs) in a range of lovely colours and patterns, there aren’t enough ‘arms’ out there to make different colours ‘cost-effective’ (ie, profitable) for sleeves. (For me, this just doesn’t ring true because there is already at least one other UK-based company offering sleeves in white, black, chocolate brown, navy and blue/grey as well as the beige. It is also possible to order glittery and brightly-coloured sleeves from sites in the US). My personal belief is that, as their products feature largely on the drug tariff for lymphoedema garments, they feel they are home and dry and that they don’t have to worry about how ugly or unsightly their products are as they have largely cornered the market. What gets overlooked is that the happier someone is with their sleeve, the more they are likely to wear it and the more they will benefit from it.
S
Hi all
Have been getting really confused as started 2 threads - sorry
Will put this under both …
It has gone from the sublime to the ridiculous - having seen GP, got referred and then seen Onc who said there was nothing wrong with me I was a bit emmbarrassed to turn up today at the Lympho clinic… but the bloke was very very pleased to see me and is running a training programme !!!
Have to go 3 times - theory, practice in exercises and massage techniques and relaxation! you were right SLSSS - and they measured my arm
OH was in shock as it has just hit home to him …he kept saying for how long … ALWAYS !!! No more heavy sessions down the gym followed by a nice steam bath …
Anyway - am posting the things they tell you do to - I hope I’ve translated them right …
TO DO:
avoid being on feet with arms at sides for long periods
avoid long exposure to sun and heat (NO HOT BATHS!!! - I NEARLY CRIED)
wear long sleves and avoid tight clothing
no rings, no watch on bad arm (I WAS WEARING THEM!)
no heavy lifting
every so often lift up your arm and sueeze a fist a few times
do the specialisd exercises every day - 30 minutes!
AVOID INFECTIONS:
wear rubber gloves for all houehold and garden work (I HATE THEM)
be careful re: burns, injuries, insect bites even though they ar superficial
take blood pressure and injections etc. in other arm
am going next to be trained
still a bit confused by it all - hard to take it in
lots of love
FB xxxx
PS Went to bed again! after a magnum - which I didn;t enjoy - they had no crisps… seems to be my defence mechanism
Hi FB
Thanks for putting the summary on…a good reminder.
Good luck with the training. I am sure the whole thing won’t be so bad once you get started with the training. they just have to make sure you know their recommendations. How much you do will be for you to decide.
Good luck
Tx
Hi Fizbix
Great to see you are posting again. When you said magnum, I thought you meant champagne!
Know what you mean and how you feel. It’s the FOREVER bit that is so depressing. A breakthrough in lymphoedema research is desperately needed.
It’s a long list of dos and don’ts isn’t it? You may find your list of dont’s gets a bit shorter as you learn what and how much your arm will tolerate - I have.
It’s sounds as tho’ you have been given lots of good advice at the clinic. Did they mention that swimming is excellent for lymphoedema? Not sure if I could comply with the bit about hands at my sides, tho, as personally this has never aggravated anything for me and I have often found it more comfortable than anything else. I suppose it’s just to harness gravity in your favour!
I’m afraid I don’t bother much with the exercises - they seem to be aimed at total couch potatoes, as I recall (or have things changed?) I decided that as I was pretty active and had full mobility, I wasn’t going to add doing those to my daily lymphoedema list, which I find pretty tedious already. I go swimming a lot, do self-massage, shoulder rolls and a Pilates deep breathing exercise which has been shown to move fluid from the limbs to the trunk. I was told by a physio once to find the absolute minimum to do to keep the lymphoedema slowly reducing/under control and to stick to it. She said that more is not better, as too much time dedicated to it is bad for you mentally as it can depress you, you start to feel that your life is revolving around the wretched condition.
Rubber gloves are brill - I’ve got the most fantastic nails since I started keeping my hands away from hot water and detergent. Highly recommend them to everyone, whether they have lymphoedema or not!
Gotta go! Got timed out yesterday! Thinking of you.
S
Hi Everyone,
I have a little lymphodoema under my arm, but I,ve got used to it and it doesnt bother me. I think that the less you do with the affected arm then more likely you are to suffer. I pretty much ignore medical advice and do everything I did before and I have a full range of movement, I did however always wear rubber gloves for washing up and gardening, I always offer my other arm for blood tests etc and I slap on the Sun cream. I always did the exercises also climbing the wall etc and I think its helped by the fact that I am left handed and it is my left side because you have to use it more.
I do have sympathy with you as you are obviously unhappy but you do not say if it is early days !!! Its a year on for me and I still have the odd twinge and numbness but its ok. There are alot of people on here with alot more to contend with.
Best wishes to you
Andrea xx
Hi Fizbix
Hope you are soothed by all these messages - I am! 
I have just had ANC and waiting for radiotherapy and I am v concerned about the risk of L esp as I have plenty of mozzie bites - you would have thought that they would go off me once I had chemo - not a chance!!!
So at 25% risk of L when I start rads in august is not that good and i would hate to have a fat arm…
All the info you found is v helpful thanks - as I wasn’t given much and kept asking how I could prevent L - I wasn’t given any leaftlet about it…I keep forgetting not to pick up a kettle full of water with my bad right arm???
I know some here have had a much longer ‘journey’ than I have but it does seem to go on for ever doesnt it - meds, chemo, surgery, rads, meds, scans …
anyway lots hugs to you and all - keep encouraging each other
Jan
Hi All,
Have just read this thread and its real interesting and upsetting as i think i may have llympodema. Mac nurse is going to refer me to the clinic. It is nice to read comments that life with the effected arm stop you.
Its so sad we have to go through this and its so unfair.
sukes
Hi Sukes
Don’t despair! I think I would say it is true that there are things which you can no longer do with lymphoedema, but MORE true to say that you can carry on doing lots of things, perhaps most things, but in a different way.
Some examples: I bought myself a ‘healthy back bag’ to avoid carrying heavy objects in my arms. I’ve also taught myself to be ambidextrous for some things, such as ironing and hoovering. I move furniture with my bottom - it’s big enough. And I use fake tan on my arms!
S
Hi
You’ve made me laugh I’m in stitches… its you using your bottom to move furniture. I’m only little but was bought up with 3 lads so i had a really good left punch so when i felt the need to punch the OH I gave him a good one…Anyhow I haven’t been able to punch him since DX and maybe i should also use my bottom but just fart…
THANK YOU
sukes
I would add to Fizbix’s list of ‘do’s’, keep your arm well moisturised - it is now part of my daily routine after my shower. This keeps the skin in good condition and helps prevent infections.
Marigolds are marvellous! I had to start wearing them about 15 years ago, very reluctantly, when washing up liquid gave me dermatitis. I now notice that my hands look a lot younger than other ladies the same age.
Silver lining of lymphoedema - always having an excuse not to lift heavy weights (just had living room carpet changed - so unfortunate that I couldn’t help in shifting furniture), and never having to mow the lawn again (thanks to whoever it was who posted that one).
Hi Everyone
Thanks for the advice and the laughs. I am having a bilateral mastectomy and a complete node clearance on my right side on Tuesday (I’m right handed) and have been dreading the big L. This thread has certainly opened my eyes and I am not half as worried as I was. I have just completed 6 lots of TAC and I suppose nothing can be as bad as that. So here I go and cheers to the exercises and compression sleeve here I come.
Good luck to one and all
Nonny
Hi all
Thank you so so sooooooooooooo much for all the support and help through this one
Think I’m over my crisis now … as someone said others have got far more to cope with
Looking foward to my training session at the physio next week - just hope no-one recognises me as I am in the closet!
Good luck everyone
lots of love
FizBix xxxx
Hi All - especially Sukes - glad I made you laugh - how’s the farting coming along?
I’ve been wondering whether we should start a fun thread ‘Job opportunities with lymphoedema’
My own suggestions would be:
-
Professional footballer.
-
Unicyclist.
-
Joining the cast of ‘Riverdance’ - the Irish Dancing.
S
that’s funny s - you should start one!