Not lymphodoema .....but.

[jillybee]

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.....🤗

[jillybee]

Saw GP,referring me to Lymphodoema nurse.....watch this space......🤗🤗🤗🤗🤗

[jillybee]

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??🙃🙃🙃🙃

[Nanny_Sal]

Hi Jilly, that sounds a bit more positive. Let's hope the control underwear helps 😃 good luck xx

[jillybee]

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

[jillybee]

Just an update....seeing my PS on Friday.....

[jillybee]

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?

[Nanny_Sal]

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

[jillybee]

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😍😍😍😍😍

[lavendersblue]

Funnily enough Jill I have some compression bras , from pre AS days , when I had lymphoedema in my left breast , and was wondering if they would help as they do hold you in and are long line ... will have to dig them out !!!
I have been really positive and " up " in the past , but since my last op on the 1st July , I have been really down and like you could cry at the drop of a hat .... and am finding it harder to remain positive . Partly because my AS has recurred after only 3 months and metasticised into my other breast and partly because of all the other rubbish .
It does help to be able to vent on the forums here and to find support from lovely folks like you .
Love ,
Jill xxx

[jillybee]

Your swelling surely has gone on for too long....I almost wanted to pop my tummy...was in gym not so long ago,on the floor,doing Pilates and felt water .....drips of it on the floor...so excited as thought it was me,but no,leaking roof.....I honestly am not really coping.Very close to tears a lot of the time,it is a struggle,but do look at what I can do,not what I can't....
Have you thought of wearing some sort of light corset thingy......just to keep you comfortable?deep joy,am still wearing my DIEP. Binders,a year from my operation....HATE THEM .....
Lots of love,J.

[lavendersblue]

Hi Jill , I actually sent her an email today , but felt really awful about causing her more work ? Why did I feel awful ??? All I want is a piece of paper with information about my own body !!!
Really glad that you got to Budapest , it sounds amazing ....somewhere I haven't been to .
My original seroma/haemotoma was positioned from my armpit down to my waist in a large sausage shaped tube ....so technically not really in my abdomen like yours. The new version since the latest drain came out , is more from the bottom of my ribs to my waist and less tube like ...sort of more spread out !!! I am hoping that because the shape has changed it isn't really part of the old one and maybe it will resolve itself this time ...fingers crossed !!
It really is uncomfortable , so can understand how awful yours is !!! I have only had mine for 7 months now ....I don't know how you have coped for so long . I really hope you can find someone who can help . Have your friends any suggestions on how you can get better help , or a different surgeon ???
To add to it all I now seem to have cording in my right armpit and some swelling in my hand and forearm , which could be lymphoedema !! Am really fed up of all this rubbish !!
Take care Jill,
Hugs ,
The other Jill xxx

[jillybee]

Oh,Lavendersblue...or Jill....like me😜..life ain't straightforward.Call the BCN or leave an ansa phone message....saves talking to them.
Yes,flew to Budapest,walked 20miles in 3 days....in the heat,and Sunday went to Latitude festival.
Where is your seroma????in your abdomen???is it not the most uncomfortable thing....have had this for a year.Spoke to friends tonight,both nurses,reckon need a second opinion...and really think about going ahead with my next op with my surgeon.Maybe try and see a surgeon that specialises in abdo....or even contact someone in America.There must be SOMEONE who can help me!take care,Jill,from Jill...

[lavendersblue]

Hi Jillybee , well unfortunately the fluid has returned , although it isn't as large an area as before . It is still large enough to be uncomfortable when I walk about or go over bumps in the car !! I mentioned it to the surgeon , but he maintains it is better left to resolve itself .... am hoping he is right !!
He says he has clear margins this time , which is good news , but am trying to get a copy of the histology report to find out exactly how clear , and having difficulty which is so frustrating !! I asked for a copy at my appointment and was told the BCN had a copy for me ....she said she would post it ...but when it arrived today it wasn't what I asked for !!!! It was just a copy of the clinic letter for my GP , not the full histology report !!! Grrrrrrrr
Now I don't know whether to wait and ask the oncologist on Monday , or try again with the BCN , see if she can send me the full report . Why are simple things soooo difficult ??? I have been eating all night to cheer myself up .....
Have you managed to sort out a holiday to take your mind off things ?
Do take care ,
Luv ,
Jill xxxx

[jillybee]

How have you been getting on Lavendersblue?me...well,much the same.Seeing surgeon September 8th....what a long and sometimes difficult 2 years.
I hope,if fluid has returned,it will have re absorbed .....x

[lavendersblue]

That is a long wait Jillybee , but hopefully when you do have it , it will sort it once and for all !! The last tw years have been a really bum time for you .....as you say , good job we can't see what the future holds !!

I had my drain out last Monday and although it is loads better , I do think there is some fluid forming again ...am just hoping it will settle down and be better ...fingers crossed . I go to see the surgeon on Friday to see if he got clear margins this time . Lord knows what will be the next step if he hasn't !!! I have no chest left ...
Lots of love and hugs,
Jill xxxx

[jillybee]

Had phone call from BCN on Friday....would it be OK. If I waited till September to see my surgeon as she is away most of August....said of course.......though it means a long old wait,my tummy is not going anywhere soon...it may give the Sgn a chance to undertake a bit more research.....so,am free of hospitals for nearly 2 months....today is the 2nd anniversary of receiving my initial mammogram.....2 years....just as well I didn't know the outcome,and that I am still undergoing surgery....GENTLE HUGS...

[lavendersblue]

Ooops didn't read your post properly Jillybee ... but still hope that when they do the op it will finally work out for you this time . Don't blame you for delaying it for your trip ...... I can relate to life being on hold . I am really hoping we can get to France sometime . Fingers crossed .

My drain in the haematoma has dropped to 20 ml so they said they will take it out tomorrow ...am hoping it has really sorted the problem this time and it won't re-fill again . I have only had my problem since Jan . don't know how you have coped for so long . Hope things are improving for you ...
Lots of hugs ,
Jill xxx

[jillybee]

It was only my pre op assessment on Friday.Was given this Tuesday as surgery date,but as I need a drain in,am delaying it as flying to Budapest then on return going to Latitude festival.....I am making plans,life has been on hold for 2 years.....so waiting for an op date.Feeling a tad fed up.....but,have lots to look forward to.At least it is not sooooo hot.love and hugs to you all......xxx

[lavendersblue]

Hope all went well with your surgery yesterday Jillybee and they finally manage to sort out the wretched thing for good !! You must be so fed of up of it by now . I have only had my haematoma since Jan and have found it such a pain . Not helped by surgeons who have tried to tell me it was merely my own ribs ???? Excuse me ...I may not be a surgeon , but I do know my own body and that swelling was NOT my ribs ...
Hope everyone is keeping well and feeling cooler .
Hugs,
Jill xxx

[Nanny_Sal]

Fingers crossed for few/no side effects Joyce! I only had to give myself one injection after each Chemo, and it was easy. Although I had plenty of fat to pinch 😜 I was quite jealous of you mentioning cold cap, what I wouldn't give for one of those right now! This weather is horrid!!

Jilly good luck for Friday! Let's hope they can get you sorted! Xx

[jillybee]

Hello all....have pre op assessment on Friday.This will be my third op to try and remove all this fluid on my abdomen,following my DIEP last summer.I have hi jacked the lymphoedema site,I am the "not lymphoedema.....but.......maybe this will work.Love to you all.x

[joyce11]

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.

[Amber_D]

Good luck for today Joyce!
Isn't it a nightmare wearing a sleeve and glove in this weather, must admit I took mine off for a short time yesterday.
So the update on the fluid on my back.......it turns out I have Lipoma, which is a benign tumour or fatty lump. It's soft to touch almost spongy and moves, nothing to be done with it, just glad it's not Lymphodema. It's not connected to cancer, anyone can get it. Hope you're all having a nice day, it's chucking it here now 😒

[Nanny_Sal]

Enjoy your wine Joyce, and good luck for tomorrow! Xx

I know exactly what you mean about this weather 😁 everyone around me is saying how nice it is!! Not so nice if you are wearing a bloody hot sleeve 😡 add to that a 1.5hr school run, and you have me! A very Grumpy Fed up Nanny! (Although obviously I keep that fake smile on, during work hours)!!

Hope everyone else is coping! Sending cooling thoughts to you all xx

[joyce11]

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.

[Nanny_Sal]

Good Luck with the Oncology Appointment tomorrow Amber, I hope he/she can answer some of your questions. Xx

[Amber_D]

Good to hear responses from an experienced person, I guess we all deal with this differently and hopefully positively. Spoke to my Oncology nurse today and she's managed to bring forward my check up appointment so will see Onc on Fri. Hopefully he'll be able to help with my problem x

[Nanny_Sal]

Hi all, I received this message on a previous post I had started, it's from a lady called Burnie, I thought I would share it on here, as I think it's nice to hear from someone who is 'living' life with Lymphoedema 😉 hopefully we will all be saying the same positive things, in a few years............xxxx

Hi there, not been on this website for quite a while but just read your thread, Don't despair........I have had Lymphoedema for 7 years now, at the beginning my arm was 49% swollen, my mastectomy scar would puff up, my shoulder would get puffy,the side of my ribs puffed up and I was gutted that I had this horrible thing to cope with on top of my cancer worries.
I just dug deep and wore my sleeve every day, didn't lift heavy shopping and basically did what I was told to do and gradually my arm has gone down to just 12% swollen. I can get away with not wearing a sleeve if I am on holiday or not driving which is great.
I think that you have to make up your mind to ignore it as much as possible otherwise it will send you crazy. Just concentrate on what you can cope with and rest if something upsets it all. You will possible always have some pain but I found that as things settle down the pain does as well.
I don't feel pain in my collarbone but do get it across my shoulder to my neck which is possibly very similar and it feels very heavy as well. I think at first we worry about every thing because that's only natural with what we've been through. Try not to worry, I know it will get better in time. xXx

[Nanny_Sal]

You've got to laugh at the way they pass us round from person to person, with no one really wanting to deal with it.

I saw nurse today. She's put the tape on my breast and the area above my collarbone. Although she doesn't think the swelling there is connected to the Lymphoedema?! So surgeon says its Lymphoedema, nurse disagrees but is willing to try the tape, and then I suppose I ask the Oncologist for his opinion! But basically get the feeling that none of them really care!!

Oh the joys!!

Amber I hope you get more luck with your nurse, when she's back from her holidays xx

[Amber_D]

Phoned Lymphodema nurse today and they're on holiday so it was suggested I visit my GP and guess what he didn't know how to help so has referred me back to nurse who will contact me anyway as I left a message to contact me on return from hols. No wonder we feel there is a lack of support x

[lottie63]

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 

L x

[jillybee]

Lottie,please send my love to my favourite island.We are off to Pathos in October...

[Amber_D]

Lottie, we are the elite club that have one tanned one white arm in summer! Just a thought, why don't they make a waterproof sleeve for swimmimg lol. Mind you it's hard enough getting a new one when you need it, enjoy your hols 😎

[lottie63]

Hi Amber,,

                   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 🙂

L x

[Amber_D]

Forgot to say lovely story about ur little boy, Nanny Sal kids surprise us all the time. My granddaughter whose 5 insists on wearing disposable gloves if she is helping me in the kitchen and used to wear a bandana when I lost my hair, bless

[Nanny_Sal]

Hi Amber

I have swelling above collarbone, but not top of my back ....yet.... Just seems never ending doesn't it. I'm off to see Lymphoedema nurse tomorrow. Hoping and praying that she can sort out my breast, as its really starting to bug me.

Hope you manage to get your back sorted.

Sending love to all 😉 xx

[Amber_D]

Morning everyone, looks like we can give a lot of welcomed support to each other, as we are the only ones who know what impact having Lymphodema has on our lives. It's with us 24/7 with no escape. The warmer weather definately instigates some rather personal questions from others, Iam personally fed up having to explain myself. I had lumpectomy and total node clearance and have Lymphodema in my arm and hand. Last week I noticed I have developed fluid at the top of my back, anybody had this problem? It will clear a bit with massage directing the fluid to my clevical but returns. Lymphodema nurse only works Tues/Wed so going to phone tomorrow.
Pouring rain here today so no awkward questions lol, take care ladies 😃

[jillybee]

Lottie63....love your reply.Thankyou so much.I am so wanting to move on,and in a way,I am.but it is this constant sadness and as you say,a daily reminder.I await further surgery,and I am sure this won't work,have lost faith in my body,not my surgeon,poor lady.It has been such a roller coaster,now just on the bottom rung,as it were,and I know once I have been discharged from the hospital I can put it behind me and look at the positives.Take care,and thanks for the reply.It is the idea it is forever,and am not happy with the idea of fluid sloshing around my abdomen for years to come.Gentle hugs.x

[Suef01]

I didn't have a mx but had chemo then wle. Also just had slnb but one year later the breast is swollen and a little bit undernearh and I also have a swelling on the upper arm. Onc says itvis lymphoedema which is unusual with slnb. Obvs I am worried thatbit could becrecurrence? Has anyone else had this sor of thing after slnb and lumpectomy rather than mx and axilla clearance?

[lottie63]

Hi Jillybee

                 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

[jillybee]

Have been reading various threads here.....it comes over that I am going through he same emotions as many of you.Angry,sad,and generally find it so difficult.Have gone through 2 years of surgery,ending up with seroma in tummy.....the question is,do you get over all this? It was easier when you have the cancer,in some ways...as I used to get down,but this time,I feel permanently low,and tearful.Any relies will give me a lift.Gentle hugs to you all.....x

[Nanny_Sal]

Hi All, Well I had a very emotional start to the day. The little boy I look after was stood outside school waiting for the door to open. Two of his little friends came and stood next to him. I then heard one of them ask why his Nanny wears that funny arm thing 😒 Bless his heart he just looked at them and said, because if she doesn't her arm will swell up, but it's only that arm luckily 😃 I was so touched and so proud, that he could answer the question and be so matter of fact about it. Have to say I did shed a tear, once the door had opened.

Lottie I know exactly what you mean about the breast swelling, and the not knowing whether it's the Lymphoedema or something else?? My breast feels different from one day to the next. So in all honesty I don't think I would be able to spot anything unusual. So I just hope the experts can!! Although I don't have a great deal of faith in them at the moment.

As for Summer, I am hating it! Which is frustrating when everyone around me is saying how lovely it is!

Of course you can join us Jilly 😃 But I do hope they can sort things for you, sounds like you have been through a rough time.

Sending lots of love to all. Xxxx

[lottie63]

Hi Ladies,

                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 🙂

L xx, 

[jillybee]

Well,am already looking at swim suits and some kind of corsets,to hold my tummy in.I really could just sit and cry,but I know it is all part of the process.It is all just so disappointing,as had the DIEP last summer,so hoping for flat tum and nice boobs...(following failed implants).well,boobs are ok,no nipples however,do have shape.To be honest,I think you ladies with lymphodaema it is worse,so visible.....I have discovered a new club....I hope I can join....it is just that I have not met anyone here,or anywhere,that has had the seroma problem,in their abdomen.My surgeon did ask the plastics team who did my DIEP,and they knew of one lady who had this....
Sorry for moaning,but I feel happier now I am here,as I asked,CAN I JOIN YOU LOVELY LOT....???

[Nanny_Sal]

Thank you Amber 😘 Finally someone who totally gets how I feel. Sending you a (((((((BIG HUG)))))) Everyone around me seems to think that compared to BC, Lymphoedema is no big deal. Well sadly I don't see it as no big deal. I see it as a bloody nightmare, and yes I know I will get used to it, or at least learn to live with it. But I will certainly NEVER see it as "no big deal".

The joys of summer, everyone thinking they can ask what you have done! I have been asked at least 10times in the last few weeks. Even people who knew I had cancer have asked. But I am so sick of saying 'Lymphoedema' just for them to then look blankly at me, and then ask what's that? It so frustrating.

As for support or lack of, I think all we can do is support each other, because at the end of the day we are the only ones who know what it's like. So Amber if you ever need to chat or moan about the joys of Lymphoedema, feel free to message me 😉 I'm sure there's something to be said for the saying..... There's strength in numbers 😘 xx

Jilly good luck with your OP, sounds like you have had a rough ride. Let's hope you don't join 'our club'. But if you do I will always be here to listen 😘 xx

[Amber_D]

NannySal, I too have struggled with Lymphodema because it is forever. Twice in the last week I've had shop assistants ask 'what's wrong with your arm' when I mention Lymphodema expecting them to leave it at that but no... More questions so I go straight in with cancer but even that didn't shut them up! Would totally agree there is very little support for us

[jillybee]

Cancer is tangible ....and is dealt with....I know I haven't got cancer,however,as you say,not the support.....feel you now have to deal with it all.I think when I was waiting for my ultrasound and CT scan,initially ....was told I will have to wait as I didn't have cancer....yes,I know that.....but.....
I will get used to it,as you have done with your arm.Must be so uncomfortable for you.
At least I have one more chance .....my 12th op in less than 2 years.I bounce back,and am a glass half full person.Your reply has meant a lot,Thankyou ....x😗

[Nanny_Sal]

Hi Jilly

Honest answer from me, is you cope the same way you coped with the BC diagnosis. You have good days and bad. I have actually struggled more with the Lymphoedema diagnosis, than I did with the cancer diagnosis. Which probably sounds odd. BUT I know that this is forever, and I'm only 40!! Plus I have found, the support just doesn't seem to be available. But having said that, I have got used to living with a sleeve, and I am slowly just seeing it as part of the 'new me'! Currently struggling a bit with the heat, which makes the swelling worse. But most days I don't think about it.

Let's hope they can get you sorted 😉 but if not, I am sure you will find a way to cope! Sending you lots of positive vibes. Xx

[jillybee]

had a DIEP last summer,and straight after had seroma in the abdomen.Drained twice,then capsulated.Recently had 2 lots of surgery,fluid has returned.To add to this all,it has locculated,gone into little pockets. Yesterday,the plan was to have it drained under ultra sound,and steroid injection popped it,but no,no luck.So due for more surgery,drain inserted,and if that works,steroid injection given in abdomen.....however,am now realising I may well have to live with swollen tummy for ever.I realise many of you lovely ladies have lymphodoema in your arms.....like,for ever,how do you cope?