Encouraging news from St George's : Hello, I first met... - LSN

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Encouraging news from St George's

Aprille
Aprille

Hello,

I first met Prof Mortimer about 7 years ago. He diagnosed me with Lipoedema which was complicating my severe secondary Lymphoedema from breast cancer treatment in 2003.

The team at St George's have submitted 4 bids over 5 years to my CCG for Liposuction funding as my arm is so bad and all other treatments fail. All 4 have been turned down. Putting a bid together takes a very long time so I am grateful to the team for their patience and hard work.

I've had a couple of MRI's over recent months and Prof felt he'd like to put in a bid himself for me. His first. I'm pleased to report that funding has been approved.

I can't quite take it in after 6 years of waiting I thought it would never happen.

I know it's a long hard road but it's so good to have a way forward identified now.

I feel very sad that my husband died before he heard the good news. He was my staunchest ally and the only person who really understood how my swelling impacted my life and his too.

It's a hard life on your own so I'm not entirely sure how I'll cope after the surgery and donning and wearing hose 24/7 for the rest of my life but it has to be better than what I'm enduring now.

I am indebted to the team at St George's for their dedication and hard work.They have never treated me with anything less than compassion, kindness and offered me support all the years I've been going.

It’s a centre of excellence of course.

I'll let you know when "my plan" is in place.

Wendy

16 Replies
oldestnewest

Aprille, so happy for you. While you may find it difficult initially, I promise you it will be life changing for the better. I had both of my legs done one and 3 years ago. I'm extremely happy not to have to deal with lugging around the extra weight from fluids. Best of luck to you.

I will be here rooting for you. Please keep us posted. Regards, Sharon

Aprille
Aprille
in reply to Snaomi

Thanks so much for the best kind of encouragement, from someone who has had the procedure x 2!

Wendy

Good luck be strong x

Fantastic news Aprille. Whilst it may be a bit of a challenge in the early weeks post op - (you may be in arm ‘wraps’ which are less of a problem to don) but when you have a near to normal sized arm, donning garments will be so much easier.

Aprille
Aprille
in reply to Lynora

Thank you Lynora,

I can't imagine having a " near normal" sized arm after all these years.

Thank you for your encouragement.

Wendy

DS1955
DS1955
in reply to Aprille

What did they do?

Wendy - I write a blog for cancer survivors - aftercancers.com - and would love to feature what has happened to you as an example to others. I too found that going to the top (in my case getting my MEP to support Lymphoedema treatment) worked. But I think so many of our fellow patients try the basics, and then give up. If you want to discuss this further see my details on Contacts page of aftercancers.

Aprille
Aprille
in reply to veriterc

Hi,

Thanks for your reply.

I thought about escalating my lack of funding for treatment but in fact I didn’t.

I merely put my trust in the team at St George’s.

I should point out that my husband was diagnosed with a rare renal cancer at about the time the first bid was rejected.

Wendy

So delighted to hear this good news. Sorry to hear that your husband died before you got this news and good luck with the operation and follow up. Have you got other family members near enough to help you post-op?

Hello,

I have 2 sons and daughter in laws .

They both live 1.5 - 2 hours away.

I live in between them just off J 3 of the M3!

No doubt one or other will be over to assist with the critical post op time but it’s not going to be easy for me.

Thank you for your kind words.

Wendy

What procedure did they preform? I need to know!

Aprille
Aprille
in reply to DS1955

I am to have Liposuction at St George's.

How lucky people are to have access to good Lymphoedema services especially where specialist doctors like Professor Mortimer are working and how disgusting that it seems to be a post code lottery as to whether you are considered suitable for any additional treatment or not . In all of the 25 years since I’ve had Lymohoedema I’ve never once seen any sort of doctor about it , never mind a Lymohoedema specialist and we are never offered liposuction or any other treatments . In fact many patients are still meeting resistance about the funding for normal compression garments and the request for the amount of bandages required for multi layer bandaging causes shock horror and makes you feel really guilty for even asking for them in the first place . Many times you feel as though you are an added expense that’s frowned upon . I’m really pleased that you are able to get your treatment , I just wish everyone with lymphoedena had equal opportunities . Good luck , I hope it all goes well . Please let us know how it goes on .

Aprille
Aprille
in reply to kHP22

It's not luck that I'm under the care of the team at St George's it's necessity.

The dual conditions has been very hard to deal with these last 17 years. My arm is huge, painful and disfiguring.

I don't live in the catchment area and have a round trip travel time of 4-5 hours.

I am very aware that many patients don’t get the treatment they need. I was one of those.

I have been offered Liposuction because all other treatments have failed.

Have you asked to be put under the care of Lymphoedma Specialist ?

Not quite sure where you are but up in the midlands somewhere possibly take a look at ;

"Professor Vaughan Keeley, a Consultant Physician specialising in Lymphoedema in the UK. He developed the Lymphoedema service in Derby, Nottingham and Mansfield."

Professor Christine Moffat is up there somewhere too. Both are leading experts in the field of Lymphoedema.

Let us know how you get on.

Wendy

I saw Ms Milroy and Dr Gordon on Friday. Their views were discouraging and have left me perplexed and bewildered for several reasons.

Firstly the letter from my CCG to the team stated that the last bid for my surgery was not required as Liposuction is not cosmetic for all patients like me.

The team and myself are surprised but also delighted as this change of policy makes my CCG the first in England to approve this type of funding.

It only took 6 years and as many bids !

More about the medical side later.

Wendy

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