Lymphoedema support groups: I have lymphoedema in my... - LSN

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Lymphoedema support groups

ameliapond
ameliapond

I have lymphoedema in my right arm and hand after breast cancer.I wondered if any one has attended a support group and if they found it helpful.Also if there are any to be recommended in the Norfolk area.Thanks

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Hello, I suffer with exactly the same as you. Also due to breast Cancer. I see a nurse at my Cancer hospital. There is no support group for just Lymphoedema in my area (Yorkshire)

Here in the states, we developed Facebook groups. They are so helpful.

Good morning Amelia. Sorry to hear of your condition. I have secondary lymphoedema in both legs, not caused by cancer surgery.

In my area we have a superb NHS Lymphoedema team based at Airedale Hospital in Yorkshire, and they run a quarterly support group, organised by the team, but it is not that well attended.

If you contact the Lymphoedema Support Network by phone or email, they will have more information about support groups and their location.

I have only been diagnosed about a year ago, and found it disheartening that there was no 'patient initiated' support group in my area - Yorkshire being a vast county and likely to have many patients with our condition. At the moment, I do not have the energy to try to start a group myself, but you may feel that you could do something?

Have you considered starting a group yourself? Not an easy prospect when you are dealing with so much in your life at the moment, but your could find that there is a desperate need for such a group in Norfolk.

It might be worth contacting your local newspaper to get them to consider a small news item about lymphoedema and your hope that there would be a support group? Long shot, but worth a go. Failing that, a small display ad in your local paper might put you in contact with other women who have lymphoedema, many of whom might be equally interested in forming a support group. You could use your email address to give you more 'privacy' and you could arrange to meet in a public place of your choice, just for a coffee initially.

Another option, could you consider putting up a poster in the waiting area of the NHS 'establishment' responsible for your post-cancer care, if such a service is available to you? Even putting up a poster in your local G.P. surgeries might get a response.

But your first port of call might be the team at the LSN offices in London. Their information/advice line in London is: 020 7351 4480. They also have a quarterly 'paper' magazine, delivered as part of the membership package, which does give some information about support groups. They are so helpful and understanding, and will be able to give you information, support and practical advice.

Good luck!

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In Nuneaton we have a great support group and we have just had our 1st birthday. I think we all find it beneficial, it has enabled us to see what services are available and we have had Relaxation demonstrations, Yoga, Tai Chi, Reiki and finished up with a cup of tea and chat. There is also a support group at Coventry. I believe LSN have a list of support groups as do Macmillan. Ask and see if there is one in your area. Good luck.

I have lymphoedema in right arm following breast and lymph node removal. There does not appear to be a support group in my area........wigan, Lancashire I just have the support of the lymphoedema nurses.

Hi all this forum is the best support group I have come across!! All from comfort of own home, cup of tea and biscuit at the ready, no transport costs.........doesn't really matter that it's not face to face. My local support group is across the water in Edinburgh and I'm sure it will be very good for those who can get to it.

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