Lymphoedema booklet

Wow. That is fantastic. So pleased for you m Paula :)

Wow. That is fantastic. So pleased for you m Paula :)

Cant believe how many people accepted an invite! The list kept growing and growing. 150 or so although not all turned up including 3 car loads from hunter Maitland couldn't get through when roads blocked due to fires. Next job will be to tidy up the rsvp list so we can post booklets out to people who couldn't come. Dr Fran Boyle launched the booklet with a great many of the 52 people featured in it turning up at the launch. Your pink sister, Carol

Cant believe how many people accepted an invite! The list kept growing and growing. 150 or so although not all turned up including 3 car loads from hunter Maitland couldn't get through when roads blocked due to fires. Next job will be to tidy up the rsvp list so we can post booklets out to people who couldn't come. Dr Fran Boyle launched the booklet with a great many of the 52 people featured in it turning up at the launch. Your pink sister, Carol

Sorry know some who have reconstruction including one who had a nipple tattoed on. Not sure of anyone with lymphoedema as well although some might. I am certain that since you are working in the health system and are already receiving treatment for lymphoedema, you are in good hands. If you can exercise and be extra fit before surgery, i understand that helps. Not sure of your time line. I know of a friend who always had f cups, who lost serious weight through diet and exercise over a year or so. She had the incentive of daughters Bali wedding. Once she gained her target weight, she had a boob reduction and was slimmer on her daughters wedding than at her own 32 years earlier. A year later she has retained her slim figure and now is a size 12 with a c cup. Not certain if thatnhelps, Regards, Carol Let us know how the surgery etc. goes.

I was at the conference in Cairns at the consumer day. I actually thought the session for consumers with the English professor was great. Would have loved to sit in the room with him for a few more hours. I actually asked him about lymphedema in the tropics and he was a bit stumped. Yes I am lucky to still be able to work. Fortunately some of my work is desk based. I was banned from clinical work when in bandages and had to hunt around for suitable two piece garment that I can get the glove on and off quickly so as to wash hands etc when necessary. It is not custom made and so the glove can be worn on either hand. I simply whip it off and leave it inside out and put it on that way next time. It is pretty bulky and ugly but do mange to get the glove on and off quickly when needed. I was really panicked when I though I might not be able to do clinical work. My lymphedema really has been challenging. I find it really encouraging that you don't wear a sleeve all the time and I aim to hopefully not wear it at work soon. I am planning more surgery soon (prophylactic mastectomy of other breast) and double tram/diep reconstruction. I am a bit worried how my arm/ hand will go but my OT has assured me if it swells that we sorted it once and will sort it again. I have tried hard to find anyone who has lymphedema and has had a reconstruction to see how they went, but have not had a response to any posts. Please let me know if you know anyone who has had the surgery and how they went. Mich, you have been in the wars. Would also be keen to hear about Bowen therapy. It is so awful how much these garments and treatments cost. I too keep working to pay for the many treatments etc that breast cnacer/ lymphedema have lead me to require. Still I am Alive and well and smile every day. Great to hear from other lymphedema people. Good luck Mich And thanks Carol Paula :) PS One thing wearing a sleeve has taught me is how I really appreciate when people don't ask "what happened to your arm?" I will be less of a sticky beak in future when people are bandaged etc. I know people will talk about stuff when and if they feel like it.

Dear Paula,

you are lucky to still be working. Unfortunately I know of a nurse who is not allowed to work once she was  diagnosed with lympodema.

Like you I thought I was doing everything right with daily massage for prevention and wearing sleeve for exercise and travel ie 2 hours plus in car or any plane travel. Then the insect bite on my neck which required lancing and daily drainage and bandaging for a week or 2 then arm getting heavier and heavier and larger and larger till it was so big at sons wedding.... 2.5 years after month program started, now back to custom garment for prevention of further deterioration. Lets hope summer is not too hot in Sydney. 

BTW the photos are from my treatment march april 2012 but thought best to leave to help mewbies to lymphoedema

you have far more issues in the tropics as I learned at the cairns conference Consumer day May 2012. One expert advised swimming or aquafitness wearing your garment although this created quite some discussion in our group when 2 therapists and 3 consumers reported back! The therapists had a 3 day conference whereas consumers only came for 1 day of mainly separate sessions.

oh dear you have been in the wars! Hope things are on the improve soon. glad to hear the biopsies etc haven't turned up "anything nasty" although stressful when they happen and you wait for the results.

Seems you are lucky to get treatment in a public hospital. I have none near me but 3 yes 3 private ones dealing with lymphoedema. Working to day Saturday to pay off out of pocket from oncologist visit yesterday and Fathers Day will be part payment for my most recent sleeve for which my fund gives little compensation. Have to be happy they did however pay for my month long  therapy at 1 of the private hospitals just not all the other out of pocket expenses I pay on a part time salary. At last after 2 years I am down to custom sleeve for flying, travel, exercise and no longer wear sleeve or sleeve and glove each day as previously.

I know my problems with lymphoedema started when they did the first core biopsy following surgery and initially it was in my boob also. Hot weather and gardening 4 years later in heat plus tick bite lead to my needing "heavy duty" treatment once could get someone to refer me to be seen by a therapist - hence my advocacy work and the reason we did the booklet.

let me know if I/we canhelp further with things. Interested to hear more about Bowen treatment also.

Wishing you well in your lymphoedema journey,

Carol

 

oh dear you have been in the wars! Hope things are on the improve soon. glad to hear the biopsies etc haven't turned up "anything nasty" although stressful when they happen and you wait for the results.

Seems you are lucky to get treatment in a public hospital. I have none near me but 3 yes 3 private ones dealing with lymphoedema. Working to day Saturday to pay off out of pocket from oncologist visit yesterday and Fathers Day will be part payment for my most recent sleeve for which my fund gives little compensation. Have to be happy they did however pay for my month long  therapy at 1 of the private hospitals just not all the other out of pocket expenses I pay on a part time salary. At last after 2 years I am down to custom sleeve for flying, travel, exercise and no longer wear sleeve or sleeve and glove each day as previously.

I know my problems with lymphoedema started when they did the first core biopsy following surgery and initially it was in my boob also. Hot weather and gardening 4 years later in heat plus tick bite lead to my needing "heavy duty" treatment once could get someone to refer me to be seen by a therapist - hence my advocacy work and the reason we did the booklet.

let me know if I/we canhelp further with things. Interested to hear more about Bowen treatment also.

Wishing you well in your lymphoedema journey,

Carol

 

My lymphedema was diagnosed quite quickly. I actually had a recurrence after having a lumpectomy/chemo radiation 18 mths prior. When I had the recurrence I had a mastectomy and was in the middle of having chemo when I felt the ache in my arm. I think because I didn't get lymphedema the first time, it was not even on my radar... Think I was a bit cocky and thought it wouldn't happen to me!! Looking back just before my mastectomy I had an infection under my fingernail on my BC side. In hindsight I should of got that seen too. Not sure if that triggered it or not. Anyway I started seeing a private OT who was probably not pro active enough. She put me in a sleeve only and no gauntlet or glove!!! I know I freaked out about the glove but wish she had insisted. Anyway the fluid shunted straight into my hand. Long strory short it was costing me a fortune seeing her, and she did not give me advise re self massage, only used the laser on me. In Qld there is no rebates for garments etc. luckily I had my radiation in the public system and manged to get an appointment at the public hospital. They started bandaging immediately. It took 7 weeks to get all the fluid out of my hand!!! So glad I was now public as privately it would have cost a fortune. I now only wear a glove to my elbow, except when I am at work, as I am a nurse and need to be able to wash my hands. On work days I wear a two piece garment and have the glove part off quite a lot due to hand washing etc. it has been challenging. I am fanatical about self massage and do at least 15- 20 mins daily. I can now go every other night without sleeping in my garment. I live in the tropics and have a custom made glove. My poor hand is sensitive to the seams. I wear a soft seamless garment but it rubs terribly on the web space between my thumb and first finger. I have fantastic OT's and have even seen the rep from the company in Germany who make the gloves but they all still rub on my web space. I am lucky my lymphedema is really under control, and it is 2 years since I was diagnosed. My hope is I can one day go to work and not wear a glove. I only work part time and usually not on consecutive days. I have had a few occasions that I have gone out without the garment and its all good so far. I have to say it is certainly a struggle, but I just make my massage etc a part of my life. I am learning to live with it. Lovely to make contact with someone who has been through all I have. I chuckled at you photo. Know that look very well ! Cheers Paula