Breakthrough Breast Cancer
hello everyone, i am going to the Reach for Recovery conference in Australia next Saturday, i am hoping to find out a lot about how other countries deal with lymphodeama, survivourship, care plans and vocational rehabiliatation for cancer patients, also about benefits.
if any of you have any questions or issues that you would like me to take with me, then please either post them here or pm me.
if any woman or men are interested in joining Breaktrhough Breast Cancer, the website is breakthrough.org.uk/, this is a great charity for women/men with cancer, they have many training courses for people who wish to campaign for what they feel are important issues, and last Wednesday Breakthrough launched its Lymphodeama Campaign.
If you’ve been effected by breast cancer here’s your chance to make a difference. join Can today
lots of love
Alisonxxxx
would be interset in how they treat lymphodemia ,as here the care is practically non existent , find getting an appointment very hard ,and as for ldm not a lot of people are qualified to do it in this area and unless you can pay privately forget it . do hope the conferance goes well will be interested in your findings .lynn
Thanks Alison for the information, enjoy your trip.
Love Debsxxx
Hi Alison
Whereabouts in Australia is the conference being held?
(I have lymphoedema contacts there who may be attending…)
X
S
Hi Bahons, its in Brisbane, send them my details if they are going, it would be great to meet up with them
lots of love
Alisonxxxx
Hi Alison, aroma et al
You might be interested in a brief account of my experience of lymphoedema care abroad. I live in France now and lymphoedema awareness among doctors, is frankly, little better than in the UK. That said, a more patient-centred approach means that it is usually easier to get them to agree to use feet or neck for cannulation, etc.
Nurses generally seem to be very on the ball and excellent at cannulating in awkward and unusual places.
If I want to get my sleeves through the French Health Service, they are always made-to-measure, fit well as a result, and cost me about 6 euros each. However, they are plug ugly, I have no choice of colour or style and they are too far too hot for the summers here.
The best thing here is the MLD, which is completely free. Before I left the UK, I had had 9 years with lymphoedema, a total of 11 sessions of MLD from the NHS. I had to supplement this with private treatment when I could afford it.
My French GP writes me a prescription (the last one was for 30 sessions) for MLD, which I can take to the self-employed physio of my choice, who treats me and then submits a bill to the health service.
MLD seems to be the preferred method of treating lymphoedema here. Sleeves are not deemed to be as important as regular massage by a trained practitioner. (Interesting theory - I’m not sure I’m in total agreement with it…). It is also common practice to take a product here called ‘Endotelon’, which is standardised, concentrated grape seed extract (you can buy similar products in the UK). Some GPs will even prescribe it.
I’ve travelled to Australia for lymphoedema treatment as well (Low Level Laser Therapy). Oz seems to lead the world in many areas of lymphoedema treatment and research, so Brisbane sounds like an ideal place for a conference such as this, Alison.
X to all
S
Hi Bahons, i am going to visit the Queensland Breast Screening network (got that bit wrong!) on Monday afternoon, so will be good to see what they have in place there, sure its a damn sight better than what we have in this country. i am so glad that you get good treatment in France and that your not having to pay a fortune for it like you have to here, and as to cannulation, well, they used my feet in my last 2 ops and the last op they had to put me out with gas to get it in, i still woke up with a cannula in each foot!!! no wonder i had a TIA! but apparently my veins thrombose, not quite sure what that means.
lots of love
Alisonxxxxxx
Hi
Yes, it’s not so much that the treatment is really good, it’s more that it is so readily available - I don’t have to plead for it like I did at my NHS lymphoedema clinic - even tho’ it was obvious I needed it.
Interesting that you had gas + cannulation in your feet for your last op…I had gas + cannulation in neck last time, which worked well, although I did look a bit like one of the Munsters (nothing new there, tho’…lol)
X
S
they use my feet now as i have had lymphs removed from both armpits, it hurts when they use your feet i think!!
xxxxx