Lymphoedema experiences

[OvacomeSupport]

Hello all

We will be doing a feature on lymphoedema in our next newsletter and would like to include stories of your experiences. If anyone would be willing to share their experience of lymphoedema in our newsletter, please could you private message me your contact details and I will pass them on to our PR person?

Many thanks for your help,

Anna

Support Service Manager

[CancerCarerChats]

Hi Anna, just to say that I think it's a fantastic idea for you to write about Lymphdema in your next newsletter. It's something which was not mentioned as part of my mum's treatment but has really affected our lifestyle & has long term effects for which we have not foreseen. There's also very little info out there in relation to oc.

Thanks!

CancerCarerChats

[OvacomeSupport Partner My Ovacome Team in reply to CancerCarerChats]

Hi CancerCarerChats

Thank you for your feedback, I'm glad you think it will be useful to feature lymphoedema in the newsletter, hopefully people will find the information helpful.

I hope your mum has all the support she needs to manage her lymphoedema now, but if there's anything we can do to help please do get in touch.

Best wishes

Anna

[CancerCarerChats in reply to OvacomeSupport]

Hi Anna, my mum was provided with compression stockings at her assessment with the Lymphdema clinic that were specially made for her (it has her name stitched inside the stockings!). However, she was only provided with 1 pair and they tell us that that they can't really provide further pairs. Another nurse tells me that these should be available on request, every 3 months from the GP but they are not the same as the custom made compression stocking she was initially provided and I am worried that they will not provide the same level of support she needs. Can you please advise? Thanks!

[OvacomeSupport Partner My Ovacome Team]

Hello CancerCarerChats

I'm sorry to hear the situation around supplying your mum's hosiery has been confusing. Who provides compression hosiery does vary depending on where you live and how services are organised. Often a lymphoedema service will provide one set of hosiery and the second is ordered on prescription from the GP (which should be free as your mum has cancer), which would explain what you were told regarding the GP.

However, as your mum has made-to-measure I would check with the lymphoedema service as to whether this needs to be ordered on prescription from their specific pharmacy, or if the GP can order, and whether there are manufacturers sizes that will fit your mum's measurements or whether she needs to continue with made-to-measure.

When you say one pair, is that one to wash and one to wear? Compression hosiery should be washed every few days so your mum will need one to wash and one to wear. She'll also need new hosiery around every 4-6 months as the elasticity will lessen.

Is your mum having follow-up assessments in case her measurements (and therefore her compression hosiery needs) change?

Best wishes

Anna

[Emsymits]

Hi. I can comment from the point of view of a (slightly) younger person (47!). I've got at present fairly mild Lymphodema so would be happy to talk about the joys of MLD and compression stockings!

Em

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[OvacomeSupport Partner My Ovacome Team in reply to Emsymits]

Hi Em

Thanks very much for agreeing to share your experiences. Please could you private message me your contact details and I will pass them on to our PR person?

Best wishes

Anna