Seen Lymphoedema Nurse.Am going for MLD,KINESIO tape and have been given some advice re: skin brushing and breathing techniques.No promises,may have to learn to live with my poorly tummy,but at least I am trying to do something.....🤗
Hello,hello,hello everyone here...OK still got fluid in tummy,not totally come to the end...still need closure/answers......have emailed 2 Lymphodoema nurses asking their advice,as yet,no reply...what are your ideas?Thinking they are dealing with unwanted fluid,undertake massaging techniques etc......Really working hard at exercising,and loosing a bit of weight...........love and gentle hugs...can you hug with Lymphodoema in your arm??🙃🙃🙃🙃
Ok,ladies...the end is in sight...But,not really what I wanted.
still got tummy bulge,but no more surgery.To wear control underwear....and all may,just MAY,resolve in a year/18months.
I can sympahise with with all of you with Lymphodoema .
Just got big tummy,not big arms.
love and hugs.x
Tummy still problematic....seen Sgn today...She is having a word with plastics next week...but I think it will be drains and steroids.She said it is not ncommon wit the LD flap.....anyone else have that problem?
Hi Jillybee sorry to hear you are still having issues, and more to the point being messed around by the hospital. I think they forget sometimes that there is a real person connected to the number that they see on their computer screen! Sadly there's not much we can do, so we just keep plodding on, frustrating as it is.
I hope you get things sorted soon, and you can get back to feeling you again (((((((((((BIG HUG)))))))))
I have an appointment today to hopefully get the swelling above my collarbone scanned! It was scanned in Oct but it has slowly got more and more noticeable, although docs keep saying it's nothing?? Well it's uncomfortable most of the time and painful at night! So even if it's 'nothing' it's causing me issues, so am hoping they might help me this time, instead of just saying....."yes some women do have this after radiotherapy!"
Like you, I just want to be able to get on with my life! XXXXXXXX
Hello Lavendersblue.....yes,still here,still with swollen tummy.Was to see Sgn September 8th,which meant I could have had surgery before my holiday,and got it in before my pre op assessment had run out...13weeks....but been changed to September 22nd,which now means another pre op assessment and surgery not till end of October.It had been set back after set back......had enough.....thanks got listening....love to you....xxxxxx😍😍😍😍😍
Hi Amber and Nanny Sal
Chemo seemed to go okay but due to staffing levels had to wait 3 hours before it was started - not what you want when it's your first visit and very scared. Cold cap - cold - no surprises there then but after the first few minutes i was convinced it wasn't working - they said it was so it wasn'ttoo bad but extends the time by 90 mins.
Now have to deal with any side effects - there may be none - three days of pills (one of which does not allow alcohol so may have to sneak in a medicinal white wine tonight) and the 5 days of self injections should be interesting , i am told it is easy , well let's hope it is.
What fantastic weather if you don't have lymphoedema. I am sure my work colleagues are thinking "lucky thing" to be off in such weather and I would definitely agree if I wasn't wearing a compression garment and tomorrow is my first chemo!! So having a glass of wine incase I don'tlike the taste with the chemo -cheers.
I will Jillybee, we went to Paphos last year this year we are trying Coral bay, just away from Paphos 🙂 I will venture into paphos harbour to see if the paphos pelican is there and a meal
I have a pocket of fluid at the back of my arm on the shoulder region, very annoying as I cant reach it to massage !! its very small at the moment but if it iincreases I will have to go to lymphodema services to have it massaged for me, its like having an itch you cant scratch lol mine is due to the lymphodema in breast I think, I am off to Cyprus on Saturday where it is currently 30 degrees so I am getting myself geared up for the quizzical looks I will surely get, lady on beach in swimwear with American tan sleeve on arm !! Hey ho I will just don the sun glasses and people watch myself, cant beat em ... join em 🙂
Sorry you are having such a rough time, in answer to your quiestion, I dont think we ever really get over this, I think we learn to live with it , Some days are not so bad and some are very hard and emotional, I am over 3 years from dx and I am certainly not over what has happened in the last 3 years and having lymphodema in the breast and arm is the daily reminder for me so I am/do find it hard to move on, obviously I am and will move on but it can be very difficult at times as I have a constant reminder ! saying that I would not want to forget what I have been through either as it has made me re-evaluate my life and what is important to me and what is not 🙂 and made me realise how precious life is
Its hard but we do get thorugh the bad days and come out the other side and thats whats important x Take time for you and whats important to you and try and take the bad days for what they are, a bad day but tomorrow will hopefully be better
Love L x
Having lymphodema is horrid ... what people dont realise is it is not curable it will never go, it may improve or it may get worse but it will always be with you, it is also a constant reminder of what you have been through, each day when the morning routine starts of massage and the the sleeve goes on its a reminder... everytime someone asks what have you done to your arm it reminds you... makes it very hard at times, I try not to dwell on it but it can be difficult, as nannysal so rightly says we will learn to live with it but it will never not be a big deal, how can it not be, summer is a difficult time the heat makes you swell more, you are hot and unconfortable in the sleeve you want to wear nice tops and dresses but you never look right as the sleeve takes the edge off whatever you are wearing, my breast flares up at times so constant worry of what if its more than lymphodema, terrified of being bitten by mossies or scratched by thorns so dont do much gardening the list goes on .....
Moan over .... enjoy your day one and all 🙂