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Advice Needed to save my sanity.....

6 REPLIES 6
Burnie
Member

Re: Advice Needed to save my sanity.....

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
Member

Re: Advice Needed to save my sanity.....

Thanks Sandra, breast isn't hot or red?! I'm starting to think it could just be the heat, I officially hate the sun!! Although I do have an unrelated issue so have appointment with GP tomorrow. So will mention it. Although I am sure I will get that usual blank look, and then the "when do you see the oncologist next"? Although the Oncologist is about as much use as a chocolate teapot, when it comes to Lymphoedema!

Thanks for the hugs.....very much appreciated and needed xx
san1952
Member

Re: Advice Needed to save my sanity.....

could it be infection?perhaps seeing your gp could help as 23rd to long to be looked at.Sorry thats  all I can think of unless you could ring and speak to lymphadema nurse to get some advice.Hope that helps thinking of you gentle hugs Sandra

Nanny_Sal
Member

Re: Advice Needed to save my sanity.....

Thanks for the reply. I'm not really worried about it being anything sinister, more worried that this is as good as it gets 😒 if that's the case I am not going to be happy!! I saw the breast surgeon just a few weeks ago, I mentioned all this and he totally blanked me! All he was interested in was examining the breast! Left feeling like no one was interested.

I just hope the Lymphoedema nurse, might be a little more useful, understanding and supportive.

I hope you get your rash sorted. Let me know how you get on! 😉 Does feel like we are on a never ending treadmill, and just as you think you are about to get off, someone turns the speed up again!

I'm sure we will get there in the end. Xx
lottie63
Member

Re: Advice Needed to save my sanity.....

Hi Nannysal

                   I have lymphodema in breast and arm also, I have had constant ache/pain in collar bone and shoulder ( collarbone worse ) for about a year, I had an x-ray and it is old arthur-ritus ! but it is a worry as any ache or pain that does not go needs to be checked out as causes us untold stress 😞 at the moment I have concern with my breast as it has been pinker than usual with a slight rash affect and after 2 weeks of anti-biotics there is no real improvement, it did a little but then flared up again so off to Marsden on monday for it to be checked, unfortunately it seems the worry never ends, Oh and my breast is often swollen and painful I believe this is down to the build up of fluid and lots of ladies complain of this so I hope that puts your mind at rest a little x

Hope you get it sorted soon

 

L x

Janet_BCC
Member

Re: Advice Needed to save my sanity.....

Hi Nanny_Sal

 

While you are waiting for some replies to your post you might find it helpful to phone our Helpline to talk this over.

 

They are open from 9-5 on weekdays and 10-2 on Saturdays.  The number is 0808 800 6000

 

Very best wishes

 

Janet

BCC Moderator

Nanny_Sal
Member

Advice Needed to save my sanity.....

Hi all, I was diagnosed with Lymphoedema to my left arm and left breast in October. I wear a sleeve and my arm has been doing okay.

BUT for the last few months I have had a lot of pain in my breast. It's swelling more than it ever has, and also pain down the side of my ribs. Which I think could be Lymphoedema connected. Also I have swelling above the collarbone, which I have had since a few months after radiotherapy finished.

But the area above the collarbone is driving me nuts, it's not so much painful as a constant ache, and I mean constant. Have appointment with Lymphoedema nurse on the 23rd. But just wandered if any of you lovely ladies, had any ideas on how to help?

I had mammogram a couple of weeks ago, which was clear. But can't help thinking that hasn't helped with my breast Lymphoedema.

I thought getting used to the sleeve was going to be my biggest hurdle in all this. But coping with the constant aching in collarbone area is much harder!

Anyone dealt with this, or any positive stories would be greatly received. This is really starting to get me down. Xx