2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Thanks to everyone who has supported me this year, from readers to contributors, without you this blog would not exist..these are some interesting stats…. .Thank you from Helen xx

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 39,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 14 sold-out performances for that many people to see it.

Click here to see the complete report.

How to protect yourself after lymph node removal during surgery

Nearly thirteen years ago I had surgery for Uterine Cancer, included the removal of 22 lymph nodes from the groin area. Follow up treatment was a month of daily radiation which damaged more of the lymphatic vessels. On leaving hospital I was given a bookmark which told me how to protect myself from Lymphoedema. It was given as a bit of a sideline and not much emphasis given to the importance of protecting my legs, or even what Lymphoedema actually was!!! The other day I was having a bit of a tidy and found this bookmark. Oh how I wish had read it more and realised how important it was to keep my limbs safe!! I think I had managed to break all the rules within the first few weeks including flying with no compression garment and taking a sauna!! No wonder my Lymphoedema started quite soon after treatment. I wish someone had told me how very important that bookmark was, how lymphoedema is a lifelong problem that you have 24/7….

Please share this with others so that they may not have to deal with this problem, or at least have some time before it starts, or are able to protect their limb from getting worse. Any time lymph nodes are removed during surgery there is a risk of Lymphoedema. Below is the bookmark I was given that seemed so unimportant, when in fact it was the most important piece of information I was leaving the hospital with!!

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This is a previous post I wrote with a link to the American Cancer society on Protecting yourself from the risk of lymphoedema post cancer surgery. I have Lymphoedema in my left leg but I must also remember that my right leg is at risk so I must always be very vigilant in caring for both of my legs.

https://lymphnodetransplant.wordpress.com/2013/07/23/precautions-to-lower-the-risk-of-lymphedema-after-cancer-treatment/

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

The SCAR Project… Breast Cancer is not Pink!

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To day I went to the SCAR Project exhibition in Sydney and met the photographer David Jay.  I was able to chat with him about the exhibition.

http://www.nbcf.org.au/Support-Us/Events/The-SCAR-Project.aspx?utm_source=google&utm_medium=ppc&utm_campaign=scar

I have seen the pictures online of the scars carried by women after Breast Cancer treatment, but to see them full size and read each story will soon tell you that Breast cancer is NOT PINK!! The women are aged 17-35 years old and some have died since taking part in this project. In the past year I have learnt a great deal about breast cancer from reading blogs, hearing personal stories of treatment and on going metastatic Breast Cancer. If you ever have the chance to see this exhibition I urge you to go. You will leave with a better understanding of why Pink makes so many upset and gives the wrong impression of Breast Cancer.

http://thescarprojectblog.com

http://www.thescarproject.org/david-jay/

Link to images
http://www.thescarproject.org/gallery/

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Brooklyn Bridge walk with The Lymphatic Education and Research Network

Walking the Brooklyn Bridge

Walking the Brooklyn Bridge

I was invited by the Lymphatic Education and Research Network to write a guest post on the importance of education and research for Lymphedema and the funds that are needed  to support their goals. On September 14th there will be a sponsored walk across the Brooklyn Bridge which is hoping to raise $60,000.

This is a link to my post…..
http://lymphaticnetwork.org/news-events/lymphedema-a-light-in-the-darkness-by-helen-bonynge

This is a link to more information about the day and how you can help raise much-needed funds…

http://lymphatic.donorpages.com/LYMPHWALK2014/

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Sharing experiences

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Sharing our experiences with others in similar circumstances helps ourselves and others.. For many years I felt very isolated dealing with Lymphoedema but since starting this blog it has opened many doors. Through social media I have been able to share my story and in return have learnt from others. When I was first diagnosed there was no one to turn to for information or helpful tips. Now via private FB groups we are able to learn from others, support each other and educate. Sharing others blogs has been of great interest. The emails I get from fellow “lymphies” and the sharing of other’s stories on my blog has been truly enlightening. So always remember, never be afraid to share your story, it will help you and in turn help others.

If you would like to share your story or ask a question please leave a comment and I will make contact with you… Also if you would like to update a previously told story I would enjoy the follow-up…. Thanks Helen

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

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Story in pictures.. Building awareness..

Apologies for my lack of updates!! I have been very busy setting up my twitter account and working on my Facebook page in the hope of spreading the word about Lymphoedema. Cyberspace gives a world-wide canvas to  work on and every person who reads, shares, likes and now twitters helps to educate and teach others. Often those of us with lymphedema feel we are the only people who know about it!!! We all have stories of misdiagnosis, lack of treatment and ignorance within the medical world. Often we find out about treatment and care for ourselves or via others who have lymphoedema. We are the best at supporting and understanding each other. Everyone who reads this can help to build awareness by emailing to friends, reblogging, following my Twitter or Facebook page… Both of which have links by scrolling to the end of these posts.. Share and like… Together we can make a difference.. 😃😃
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The other part of this post is to tell a story in pictures of my three weeks spent having complex bandaging. At the end of the three weeks my L-Dex reading was down to 5.1… The best it has ever been for the past 12 years. My leg responded very well to the MLD and bandaging to the extent that it looks as if the transferred nodes are starting to really help the lymphatics in my leg. One problem area was the fibrous tissue at the back and side of the thigh. This we know cannot be helped by the Lymph node Transfer which will only help move the fluid. Three weeks of MLD, bandaging and the use of laser has softened this area so now there is more chance of it shifting. I have also been measure for a new compression stocking. Previously I have worn a circle knit stocking but the therapists at Mt Wilga prefer the flat knit garments which have a seam up the back and are quite thick. This was the type of garment I had 12 years ago but i did not find them comfortable as I had an up to the waist garment. However this new garment is much softer and feels very comfortable. The decision was made to order a custom-made Elvarex by Jobst. The off the shelf garments are now not the right size as the shape of my leg has changed, lower leg almost the same as good leg but from just below knee upwards still quite swollen. So here is the story of my three weeks in pictures.

First week you can see how swollen the knee area is and middle of leg

First week you can see how swollen the knee area is and thigh

Complex bandaging which is kept on 24/7 except for a shower and treatment.

Complex bandaging which is kept on 24/7 except for a shower and treatment.

Washing, drying and rolling the bandages is done every day and is the patients responsibility.

Washing, drying and rolling the bandages is done every day and is the patients responsibility.

Taking the bandages off each day ... Starting to see improvements

Taking the bandages off each day … Starting to see improvements

A chart of progress measurements

A chart of progress measurements

Measurements taken to calculate volume change. This is done at the start and end of the three weeks and then calculated on a computer program.

Measurements taken to calculate volume change. This is done at the start and end of the three weeks and then calculated on a computer program.

Elvarex flat knit stocking, black as so over beige!!! Happy with results

Elvarex flat knit stocking, black as so over beige!!! Happy with results

So where am I at now? Well the leg is still reducing but I still need at this stage to wear a compression stocking. July 4th I have another follow-up appointment with my surgeon. More photos taken more measurements and progress report. I am still part of the research program so will be monitored for at least two years. I think after fifteen months I am starting to see progress… Not a cure yet but progress in the right direction. It shows that time is needed and a lot of patience to see results. In six weeks I return to Mt Wilga for a review of my stocking and how it is fitting and also another measure in the hope there is more reduction.

Copyright © 2013-2014 by Helensamia. All rights Reserved.

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https://lymphnodetransplant.wordpress.com/ Thanks

You Understand!!

I have been thinking the last few day how special it is to talk to another person who has Lymphoedema… Because they get it with no need to explain. While staying at Mt Wilga I have had that opportunity… Very special….
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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

I am blogging for Mental Health

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May 14th 2014 will be Mental Health day, as a blogger I am taking up the challenge to create a post for this day. I hope to help spread better understanding of the issues around mental health, to diminish the stigma and encourage people to speak out. Never be afraid to seek help. Talk to a family member, friend or a professional if you feel you are not coping. So often we say we are ok, when we are not, but never be afraid to say you need help. Sometimes a simple chat can help, but sometimes it takes a psychologist, psychiatrist or counsellor to help.  Medication maybe needed. Always remember there is help if you let people know, never, never be afraid to say “I need help.”

imageI am going to use this opportunity to share with you a charity we have in Australia called  RUOK… As the name says, it is about talking to people, checking on their wellbeing, spending time on starting a conversation that may save a life. You maybe the  friend or family member that someone confides in, so make sure you listen, support and if need be find help for someone.

https://www.ruokday.com

Just starting a conversation with someone could make all the difference.
#mhblogday

 #mhblogday

#mhblogday

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks