Lymphoedema

Hi Clare. You need exercises. Ask about a lymphodema clinic so that you can get the best ones suited. They are basically light massage and stroking the fluid away to lymph nodes that are intact. I had very simple lymphodema and sorted mine out fairly easily. There’s a bit in my blog with a video. It does need attention as if left alone it can become permanently hard. Get back to your CNS? 

Hi Clare As Dani says it needs looking at. My cancer centre has a dedicated lymphedema nurse and clinic. Contact your c n s. I was lucky I didn’t get any but exercises do get the nodes  flowing again. 
Hazel x

Hi Clare.  
i have lymphodema also.  I have had some advice on massage from my hospital and have also had some private massage treatment. I also have something called a Hereford collar that I put on each morning to do special lymphoedema excercises  

These collars are hard to get now because the manufacturers have stopped producing them!!  
However, my consultant says the lymphoedema will definitely go eventually snd it is improving with the excercises.  Ask at your hospital to see the lymphodema nurses.  

Hope this helps 

lizzie

Hi Dani. Thank you. I watched your video. Did you have neck dissection? Mine is so swollen but because of dissection and now radiotherapy it’s seems there is no route to facilitate the flow. 

Thank you. I’m going to ask today. Did yours feel pressured and burning? How long post treatment did you wait before starting the e cerci session and massage please? I still have three radio. sessions to go. 

No dissection that’s why I said to get a regime that fits you. You don’t need that on top of trying to recover. I see you haven’t finished RT yet so raise this with your radiographers and insist you get an appointment with somebody who can help. I guess your skin might be in a bit of a mess too so you have to get that fixed first. 

Thank you. I’m waiting to see a doc as it is so swollen. X 

Hi Clare

Lymphoedema is quite common.  Definitely speak to your team and ask to be referred to the Lymphoedema Clinic.  They'll be able to give you suitable massage techniques for the area plus go through any treatmentsto help.

Linda x 

Hi Clare 

I think I started the lymphoedema exercises about 21/2-3 months after my treatment finished.  It did feel sort of stiff and ‘full’ at first.  My face and chin is always fatter in the morning when I wake up.  I am 7 months post treatment now and lymphoedema is definitely improving.  I did not have a dissection. 
Wishing you all the best

lizzie

Thank you. Well I saw the consultant who painted a very bleak picture and that it could well get worse and likely to be permanent as no route down neck to get out.  I asked to be referred to the lymph clinic but he said they don’t refer for head and neck! I left feeling annoyed. My sister in the meantime has discovered there are other options!