Bought a new iron and finished ironing but all of a sudden i have noticed my hand near my little finger and my wrist swelling up - i’m so worried this could be lymphodema.
I’ve had cording in my arm for a few days and did do a few physio exercises they give you to do when you have a lumpectomy so i don’t know if its that. My arm doesn’t hurt but my wrist area is defo swollen.
I’ve left a message for the nurse to call me as i’m so worried and pray it wont’ be lympodema - i’m left handed and its my left arm.
My arm around the wrist and area is still swollen and the mac nurse come ova today. She told me not to worry but i can’t help it. It BC isn’t bad enough does this means each time i look at my arm its going to be a constant reminder.
she’s also going to refer me to the lympodema specialist - which is based at the local hospice… and that scares me silly.
It’s good that you are being referred to a lymphoedema clinic. Don’t let the fact that it is based in a hospice put you off. I was treated in one not so long ago and it was in a room just off the main entrance, just like my GP’s consulting room - not a distressing experience at all. It was also quieter and cleaner than a hospital, with FREE car parking! Lymphoedema treatment gets put under the heading ‘palliative care’, which is why the clinics are often located in or near hospices.
My lymphodeama nurse is also based at the local hospice! I know what you mean about the constant reminder. I must admit I was a bit weepy last time I had an app. Mine is very mild, 7% and though I have been prescribed a sleeve and glove, I am not wearing it. I didn’t even notice I had it, my doc did.
I made the decision not to wear the sleeve as some places allow you up to 10% as it is my writing hand and that will make it bigger anyway. Mine is hardly noticable. I must admit I got a fright last week on hol as got mozy bitten all over that arm. But doesn’t look like it had worsened.
Sukes - me again - how many lymph nodes did you have removed?
Just to say that if you are lucky then it will calm down a bit
from what I learned today - ironing is “off”. I didn’t ask about ironing but I did ask about window cleaning (I generally do it with both arms fr a bit of a stretch) and window cleaning was a tut tut dont even think about doing it!
I have the feeling that you may not have had a full set of info - as I didn’t
Bascially as the arm can’t drain as well as it used to then if we use it a lot or it gets infected then it won’t be able to cope and we’ll be in trouble - charming though it is
from what I learend today you need to help it drain … sit with it raised to help it drain round the armpit (i.e. not up hill) and hold it above your head opening and squeezing your fist a few times
others will know more - espeically SLSSS (seabird) who was a lymphoedema nurse - she usually comes on later as lives in Aus …
thnk you need to make sure that you rest it tonight and help it drain - good luck
try not to panic - I was distraught so I know what you’re going through
good luck and let us know!!
{{{{{BIG HUGxx}}}}} love FizBx xxxx
PS From what I know so far I really CANNOT UNDERSTAND why there is not a separate thread on this - which I kow has been requested!
Hi All - especially Sukes - I think I’m following you round the boards!
Interesting the remarks about ironing and window cleaning…Hmmm…I’ve trained myself to be ambidextrous when doing these tasks, and also to spread them out a bit. I might iron a few bits, then read the paper, then iron a bit more, then have a coffee, then wash up. I don’t do big ironing marathons any more, but I do manage to do it myself, without causing distress. I don’t put any water in my steam iron, tho’ as it just adds to the weight - I use a separate spray, instead.
A separate thread would be brill - especially as there are different spellings recognised for lymphoedema/lymphedema!
I know how you feel my dear … I am feeling a bit better about it (as opposed to “bitter” about it) - 2 weeks after the problem - it’s such a shock isn’t it?
it’s just another hurdle in all of this … everyone seems to feel the same as we do … for me it’s the worst part by far …
at the end of the day others have coped before us, we will cope , and others will cope after us … not that we aren’t all fedup with coping !!!
good luck with the appointment - when is it?
at mine he (physio) asked me how i was - I said “fine” but he didn;t believe me as I had big tears in my eyes that didn;t spill out but I’m sure he noticed
anyway - trust me - you will feel more in control again in a couple of weeks
lots of love and a big hug
FizBix xxx
my lymphodemia clinic is in the hospital and a nurse comes in every few months ,but i feel we should have a more regular visit as sometimes you need advice frequently especially if you arm suddenly swells up ,most breast nurses are not trained in lymph massage ,its a very gentle almost stroking motion ,as if you massage too hard you can spread the fluid elsewhere ,i had 15 lymphnodes removed as well as mastectomy and that seems to be the main cause of lymphodemis risk . as for ironing i dont do much only the garment that is needed (daughter can do her own !!).and definately no window cleaning ,i leave that to a very hunkey window cleaner !!! it has affected my life quite a lot as unable to return to work as yet ,but at least im still alive albeat not quite kicking it as yet ! i wish you well and yes they should have a separate link for lymphodemia sufferers as unless you have got it yourself you cannot understand how frustrating it can be somtimes , lynn x
I do so agree with you about the level of support available for this condition. I developed lymphoedema long before there was a clinic in my area and I was obliged to go private for years. (My OH and I did some sums the other day and reckoned we’d spent £10,000 in 13 years on treatment - and we’re by no means flush!)
I was lucky enough to find a highly qualified therapist almost on my doorstep and she was an absolute lifeline - a truly caring person, highly skilled in MLD (went to Austria every two years to update and refresh her qualifications) a mine of information on new research and techniques, happy to dispense advice over the 'phone and fax orders for different coloured sleeves through for me. Through her I was able to have CDT (Complex Decongestion Therapy) which permanently improved the lymphoedema and broke down a lot of the fibrosis that was developing. I got rather spoilt, I think. When the NHS lymphoedema clinic opened I eventually got a referral there - by this time I had it in both arms - and it was quite a contrast in terms of treatment options, level of expertise and getting appointments. Although the head nurse was very good and well-qualified, she was seldom available and most of the patients were seen by two less well-qualified people.
Thanks for the lovely comments. My Mac nurse has put in for a fast track but i don’t know how long it will take. FizBiX your advise has helped reduce the symptoms I keep holding my arm up and clenching my fist and stroking upwards. My arm feels tender near the elbow and by my biceps. I too we should have a seperate link on lymphodema as the Mac nurse told me 27% of women get it and when you think each year 44K get BC that quite a lot over the years.
I won’t be ironing in a hurry but it is difficult not to lift anything heavy when you have a two year old to handle. The other two are old enough not to be carried around in put in and out of cars but i can’t expect that from the little one.
I must admit the BCNurses here are pretty pants in the sense since DX i have had little communication with them other than how are you and how many doses of chemo have you got left. The Mac nurse has been fab and i can’t fault her and i can ring her any time.
I will keep u informed on when I have my appointment.
Take care
Sukes
Both my oncologist - who told me I have it 3 days ago - and my onc nurse who agreed at chemo yesterday though she’d said it was nothing 3 weeks ago - seem to think it is a bit of a joke. This is Finland where the national characteristic is something called ‘sisu’ which translates as something a lot tougher than endurance. Everyone grins about cancer here, seems to me, so lymphoedema is a bit like having a wart or something. No treatment for it until after rads, according to my nurse - said with a big grin. No one to see, nothing to do. But they were very quick with a referral to have a sleeve fitted - though they didn’t quite say what I am supposed to do with it when I have it. What is it supposed to do? How much should it be worn?
M-L
I was given a sheet at the clinic with some lympoedema exercises on it
have been doing them since - once I’ve finished my training I’ll put it all on the site but in the meantime - just for you!
this is what is on the sheet - with photos - I’ll do my best -if yo have a o i suggest you get a gym trainer to help you … here goes …
you do each exercise 15 times … and start by doing 2 sets … should tak ehalf an hur - I take 20 minutes but figure something is beter than nothing!
lie on back on floor with feet flat on floor and knees up to support back. Hold your hands together and keeping your arms straight move them from your tummy/crotch (!!) up in the air over head to the floor behind your head - wihtout overdoing it!. Bring back again.
do 15 times
same position on floor. cross arms over chest and open up and put back of hands on floor - without overdoing it
do 15 times
same position on floor - put one arm straigt up in the air - towards ceiling - close fist and hold for 5-6 secs open for 2-3 secs - repeat 15 times. do other arm.
sit on end of bench with broom handle (take the broom off the end). put hands shoulder width apart. hold brrom out in form of you and then keeping arms straight move up and round until over head - hold for 2-3 secs. This is quite hard.
arms are always straight. repeat 15 times.
sit on end of bench with broom handle as before but with arms bent. push right up to ceiling and then bring down bending arms.
repeat 15 times
sit on bench with brrom handle as before - hold up to shoulder heght - arms straight. keeping hips forward rotate to right and left.
repeat 15 times
stand up straight. one arm at a time . make a fist and then draw a huge wheel in the air from front to back. 15 times - do other arm.
same thing but with hand turned out i.e. open palm facing away from you 15 tims - do other arm
repeat the whole lot again
good luck with it if you have a go - make sure you get someone to help you who knows about exercise (professionally)
You may be interested in one of our factsheets on the subject of lymphodema and I have given the link here to the publication. It contains lots of information on the subject along with examples of exercieses which can help ease the symptoms.
Hi All - thanks for posting those exercises Fizbix - I really ought to do a few again, I suppose! It’s just that after doing simple lymphatic drainage, hysterectomy exercises and stiff neck exercises (I’ve had a terrible one since rads 4 years ago), I’ve had enough in the mornings and want my breakfast!
Emelle - it’s my understanding that a sleeve helps firstly to prevent further swelling and also maintain any improvement in the arm.
As to how much you need to wear it - that’s a tricky one. I imagine it would depend on how bad your arm is, what sort of lifestyle you lead, etc, etc and you probably need some professional advice A sleeve works best when the muscles underneath it are being used, so if you’re sitting down watching TV, it’s not having much effect (which is why, I suppose, they tell you not to bother wearing one in bed!). However, if you then pick up some knitting, say, it starts to do its job.
I was once told to wear one just ‘when I was busy’. Trouble is, you don’t always know when that’s going to crop up and it’s not always convenient to ‘pop’ one on then and there. But I do know continually putting a sleeve on and taking it off again eventually shortens the effective life of the sleeve, so what you choose to do may depend on how often you can get new sleeves and how much, if any, cash you have to front up yourself for them. Since, for aesthetic reasons, I generally buy some of my own (I like different colours!), I try to get my money’s worth and not fiddle about with them too much.
Thanks for the advise. I will attempt to do some of them today. Also the nurse is coming ova tomorrow so see what she says about the referal. She said normally it takes about 6 weeks for an appoitment but she’s going to fast track it.
Hopefully i should get an appointment within the week or so.
Take care and hope your arms feeling better.
sukes