[Liv]

I am a breast cancer survivor, having had a mastectomy and lymph nodes taken in 2000. I have looked after my arm for the past 14 years, not letting any BP or blood tests being taken and arguing with an anaesthetist about having the drip put in my hand when I had surgery on my other side. In the past 12 months I have been suffering badly with pain from carpal tunnel on that side, so bad it was keeping me awake at night. So thinking that it had been 14 years and I was probably okay to have the surgery now, I did and now I have the one thing that I have dreaded and fought against getting............lymphedema in my hand and arm. I am absolutely beating myself up over this, how could I be so stupid. I now have constant pain with a very swollen hand and arm and I have to wear a compression bandage which I hate. What an idiot! To make it worse, I can barely knit!

 

[Jeannie2009]

Liv, I'm so sorry. I don't know much about your condition so I cannot offer advice. I hope the lymphedema is only temporary and the pain goes away quickly. Blessings.

 

[patchz]

So sorry to hear that you are in so much pain.
I hope things pick up for you soon.

Take care

 

[user64822]

That's such a shame, I'm sorry you're in such pain. I hope it improves soon.

 

[disgo]

Stupid no but human yes.

I'm no better thinking with old age I was just suffering like all my clients with congestive heart failure. Unlike you I wore my compression hose faithfully and kept my edema down and the normal skin discoloration. When hospitalized for pneumonia and with all the scans found out I have the exact opposite of congestive heart failure. I have an enlarged right sided heart with pulm. edema and hypertension. No treatment or medications available to treat it so just plain terminal. I'm glad for what I have left but am deteriorating rapidly.

My thoughts are with you. Don't forget your elevation.

 

[Wombatnomore]

I am a breast cancer survivor, having had a mastectomy and lymph nodes taken in 2000. I have looked after my arm for the past 14 years, not letting any BP or blood tests being taken and arguing with an anaesthetist about having the drip put in my hand when I had surgery on my other side. In the past 12 months I have been suffering badly with pain from carpal tunnel on that side, so bad it was keeping me awake at night. So thinking that it had been 14 years and I was probably okay to have the surgery now, I did and now I have the one thing that I have dreaded and fought against getting............lymphedema in my hand and arm. I am absolutely beating myself up over this, how could I be so stupid. I now have constant pain with a very swollen hand and arm and I have to wear a compression bandage which I hate. What an idiot! To make it worse, I can barely knit!

Was there any discussion about the risk of lymphedema pre operatively?

 

[nitnurse]

So sorry to hear you are in pain. Don't beat yourself up over this. You could not have known this would happen. I have a friend who is a cancer survivor (cervical cancer) and she now has that condition in her leg and has to wear a compression bandage too. This all happened many years after she had fought and beat the cancer. Seems it can occur at any time. Be kind to yourself, sounds like you are suffering enough without blaming yourself too. You are not stupid, just human.

 

[Liv]

Dear Disgo, I am so sorry for your predicament and I feel bad complaining of my lymphedema. I wish there was something else I could say to you. My thoughts are truly with you.

Other ladies, no there was no discussion re possibility of lymphedema occurring from either my now GP or the surgeon. Previously, I had been warned back in 2000 by my then GP to never let anyone do anything to my arm. Again, how stupid am I?

Thank you for your kind words, I didn't write to gain sympathy, I just needed to get it out as I am so depressed about it all, but now I know and realise there are much worse people including our fellow KP lady Disgo, who are much worse off than myself.

 

[babysnapdragon]

Hello there. When things have settled down a bit for you, ask your oncologist whether you could have manual lymphatic drainage down (MLD) I used to work in this field and taught my patients how to do SLD (simple lymphatic drainage) but MLD is one better. Once you get the arm back down then, yes, I am afraid you will need to wear the sleeve to maintain the reduction. However, once you have done that you may well find that you can then knit again. One of my patients typed for her living and I got her back to work just fine....yes he wore her sleeve and it did the trick. Have you been given some simple exercises to do to help with the lymph drainage as well? If not PM me and i might be able to guide you

 

[nitnurse]

My friend who has this in her leg goes to someone for deep tissue massage which helps reduce the swelling. It takes some time to get any benefit from it and I know she is also very depressed at wearing a pressure bandage. She has the bandage all the way up her leg and cannot wear dresses or skirts now. One leg is noticeably 'fatter' than the other and she lives in trousers now. I appreciate that having this in your arm would be quite restrictive due to the pain and not being able to do your crafts and such. Maybe you can enquire from your GP about this tissue massage to see if it might help you. I wish I knew who she goes to. She lives in Sydney and it is a bit of a journey for her to get there, so I don't think this chap is all that local to Sydney.

 

[vershi]

I am sorry to hear you are in a lot of pain, my thoughts and prayers are with you, hope things improve for you and you can get back to knitting.

 

[kiwiannie]

Oh Liv,you have my heartfelt sorrow,i hope things start looking up for you soon.HUGS xx

 

[Lostie]

Not stupid at all. You followed what was advised to you at the time.

You have all my sympathies and hugs, and I hope this will improve soon x

 

[Thatbella]

I hope all of the ladies that have posted ill health are holding their own.

It is always sad to hear the stories - and though we do not "really" know each other - WE DO.

This place is a family - there is a lot of support here.

The best of wishes to all.

 

[no1girl]

I was talking with my niece today...she has this in her breast. her second time with breast cancer......the nodes are gone and one breast is 3 inches larger than the "good" one.
we hope she will get over this...she does have a compression garment, and the Dr wants to drain the fluid out into her groin(dont ask me>!!!) I feel ill for her.

 

[Joan H]

I hope all of the ladies that have posted ill health are holding their own.

It is always sad to hear the stories - and though we do not "really" know each other - WE DO.

This place is a family - there is a lot of support here.

The best of wishes to all.

I concur, you are all in my prayers.

 

[wendyheather]

I'm so sorry. I too have to avoid my arm (left) due to cancer. I haven't had a mastectomy, and I'm 2 years down the line from the operation, so I have a while to go before I'm considered "clear".

I find it a nightmare trying to tell people in the medical profession that they can't use my left arm, so I sympathise with you. I always think what would happen if I was involved in an accident or something, where I wouldn't be able to tell anyone to leave my left arm alone!

I must admit, that if I'd been in your shoes, I would have made the same decision and considered it "safe".

Sending hugs.

 

[Liv]

I am writing to thank the ladies who have written some very helpful and encouraging words to me. You are truly very caring and you have no idea how much you have helped me with your kind words of support.

 

[DonnieK]

Stupid no but human yes.

I'm no better thinking with old age I was just suffering like all my clients with congestive heart failure. Unlike you I wore my compression hose faithfully and kept my edema down and the normal skin discoloration. When hospitalized for pneumonia and with all the scans found out I have the exact opposite of congestive heart failure. I have an enlarged right sided heart with pulm. edema and hypertension. No treatment or medications available to treat it so just plain terminal. I'm glad for what I have left but am deteriorating rapidly.

My thoughts are with you. Don't forget your elevation.

I too am very sorry that you are in so much pain. I will add your to my prayer list because I do know that this works.
I quoted disgo because I have the same condition and by rights and from all doctors, I should not be sitting here right now, and I know that it is only through the Grace of God that I continue to stymie the doctors!!
We all have our issues but it is how we handle them that matters.
Don't beat yourself up. You made a decision and it was one that you made knowing that you might have issues from it, but your other choice was to live with the painful nights without sleep due to carpal tunnel. You made the best and most informed decision you could make. Trust yourself.

 

[no1girl]

I'm so sorry. I too have to avoid my arm (left) due to cancer. I haven't had a mastectomy, and I'm 2 years down the line from the operation, so I have a while to go before I'm considered "clear".

I find it a nightmare trying to tell people in the medical profession that they can't use my left arm, so I sympathise with you. I always think what would happen if I was involved in an accident or something, where I wouldn't be able to tell anyone to leave my left arm alone!

I must admit, that if I'd been in your shoes, I would have made the same decision and considered it "safe".

Sending hugs.

may I suggest you have instructions in your purse, in case of accident.