lymphodema in UK

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lymphodema in UK

Postby mick sasse » Fri Jan 12, 2007 5:42 am

firstly a great site to visit. secondly is there one specifically for the UK that you know of? Here in the old country lymphodema seems to take a very back seat, there are very few specialist nurses/therapists unless you are prepared to pay a fotune for the service. I live in Scotland and there is only one part time nurse for an area of Perthshire/Tayside/Dundee. She only gets to see about 4 patients a day. When I lived in Cornwall there was a better service, but that was funded by a private hospice. It seems that we are being overlooked and left to fend for ourselves.
Is it different in the US?
mick sasse
 
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Joined: Tue Jan 09, 2007 9:19 am
Location: SCOTLAND

Postby silkie » Sun Jan 14, 2007 1:23 am

Hi Mick

Welcome I am in the uk and believe it or not Scotland rates
pretty high for lymph care

I am not sure about your area but i can give you a place in Glasgow
the Girls there are really helpful and i'm sure can be of some help.

A lot of lymph care up there is done by hopsices and palliative (hope thats spelt right) care

ok directory of lymph services in the dundee area

http://www.lymphoedema.org/bls/aspages/ ... omerID=904

this is the Glasgow web page

http://www.palliativecareglasgow.info/

marie was very helpful there they have helped one or two of our chat grp members in Scotland

this is our sister group we chat here Sunday evenings 8pm british time
if you want to pop in

http://groups.msn.com/LetsTalkLymphedemapatientsGroup

hug

Silksxxxxxxxxxx
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silkie
 
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Location: England

thought I was unlucky!!!!

Postby mick sasse » Mon Jan 15, 2007 9:08 am

well I've been into this site now for nearly a week and every time I come back I realise just how lucky I am, and how sad it is for so many others. I used to be a radiographer so thought I knew "things" medical, but you know, before I got my cancer I didn't know anything about lymphodema. In fact I knew nothing until I contracted it myself. I had seen plenty of oedema of different types, but until today had never heard of primary lymphodema. I thought I was unlucky to have cancer for nearly 3 years, lose bits of me, and then get lymph. but now have taken a completly different viewpoint. My father died of cancer 5 years after I had mine and to see the way he suffered gave me all sorts of feelings, from sadness to guilt. Now I read about others problems and it puts a lot of things into prospective. Everyone is so supportive of each other. It is really a great site. Thank you all for being there
mick sasse
 
Posts: 7
Joined: Tue Jan 09, 2007 9:19 am
Location: SCOTLAND

Postby silkie » Mon Jan 15, 2007 11:09 am

Hi Mick

I am in the UK primary lymph and liepdema since pubity

diagnosed finally at 52 lymph 54 lip

Primary is usually told to live with it

Thanks to this site and others lymphers are finding out they are not alone and if you cannot find doctors that can help you have a huge family of lymph ppl that know the score and are there for each other

I feel pretty lucky (no bull) in the support and help and friends
i have found they get you thru so many times and they have a knowledge from experience and understanding from dealing with indifference

welcome to the family Mick

Hugsssssss

Silksxxxxxxxxxx
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silkie
 
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Location: England


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