A light at the end of the tunnel!

image

Can I see the light?…Google images

I started my day today with the Physio for Manual Lymph Drainage and to see how things were going. This week I had not used the Ready Wraps and had worn my compression stocking instead. I had felt that the Ready Wraps were pushing the fluid from my knee downwards instead of up and away!! I had also decided to just do the walking I needed to do this week, not strengthening exercises or stretching of the knee. This was because I am not sure if the extra exercise was causing the knee to swell rather than being Lymphoedema. We did not do any measures today but the Physio felt that I was actually getting a visible knee and less swelling. Next week we will measure again and hope to compare these to pre surgery measurements. My leg is soft and there is no pitting, so this is good, but is it due to Lymph nodes or all the treatment I am getting!!!

Next it was off to the imaging department and the ultrasound I had been dreading. Could they see any viable Lymph nodes in the transferred tissue? As always my surgery was of great interest to the technician, as a first at Macquarie Uni Hospital.(leg) The  lady had lots of questions, which at least helped to calm my nerves. She then started to do the ultrasound on my knee and I could barely breathe…
“I think that’s one there and it’s working hard.”
Oh my goodness what a relief I could feel the tears coming but managed to hold it together. The technician then went and got two of the doctors to come and have a look. They thought that maybe there were two lymph nodes and asked how many had been transferred, but I did not know that, I thought it was usually only three or four to protected the donor site. They said because there was fluid present it was difficult to tell but they thought two… Well that is much better than zero…. My story continues!!!!

image

Coming out of the darkness.. Google images

A light at the end of the tunnel, after all that I have been through, was more than I hoped for. I emailed my doctor and told him to expect a report and I wanted to hear the results before I see him next Friday!!

Primary Lymphedema.. Jessica’s story..

Lymphatic system

Lymphatic system (Photo credit: Wikipedia)

Primary lymphedema is a rare, inherited condition caused by problems with the development of lymph vessels in the body. Primary lymphedema occurs most frequently in women, it can be divided into three types.

Milroy’s disease (congenital lymphedema). This is an inherited disorder that begins in infancy and causes the lymph nodes to form abnormally, leading to lymphedema. This is responsible for between 5-10% of cases. It affects multiple limbs  and other areas.

Meige’s disease (lymphedema praecox). This hereditary disorder often causes lymphedema in childhood or around puberty sometimes in the 20s. It causes lymph vessels to form without the valves that keep lymph fluid from flowing backwards, making it difficult for your body to properly drain the lymph fluid from the limbs. This accounts for 75-80% of cases  and affects usually one leg and often just the foot, calf or ankle.

Late-onset lymphedema (lymphedema tarda). This occurs rarely and usually begins after age 35. This late onset Lymphedema effects about 10% of cases.

World wide there are millions of cases of Lymphedema but often they go untreated or undiagnosed. All types of primary lymphoedema have inadequate lymphatic drainage. The cause is not well understood, it is probably due to genetic faults or from abnormalities that occur in the development of the lymphatic system during gestation.

This is Jessica’s story of living with Primary Lymphedema from a young age and the impact it has on her life.  English is not Jessica’s first language  so I have edited some but not all her words.

“The year I turned Nineteen left an unforgettable mark on my life. My father died suddenly and I was taken by surprise, I was confronted with the strange path of fate and the unbearable feeling of the irreversible…Years later I would realise that in the same year I would again be confronted by something irreversible…. Primary Lymphedema.

Some months after my father died, my friends tried to cheer me up and we went together on holiday. It was a hot summer, I had some insect bites also before my trip I was working in a restaurant, to earn money for the holiday. During that time I noticed that my feet were swollen….but off course nobody knew what it was and nobody took it seriously.

Later I was diagnosed with primary lymphedema in both legs, at the time I was very frustrated with that diagnosis – although I did not really know the consequences then. I thought it was just horrible to have swollen feet during the summer… When I think of this now, it just sounds stupid… I would gladly to have that situation now!!

Eight years went by and somehow I adapted quite well: in fact most of my friends never noticed. Twice a week I went to the physiotherapist for manual lymph drainage and during the summer I had to wear some kind of compression stockings but only occasionally. The only thing I could not do was wear high heels during summer… so hello flip flops! I spent my years quite care-free: going on long adventure trips, working long days in the restaurant to pay for university and my holidays!

When I finished my degree I started working but on my way home one day I had an accident and I fell on my leg. It started to get swollen but I thought it was temporary and although I had a major infection I did not stay home from work. However as time passed I started to worry, doctors told me it would get better, but that due to my history of primary Lymphedema it would take more time. Six months of intense taping, bandaging, MLD and swimming, did not help it was still the same. I started to panic and visited lots of doctors and all they had for me was bad news, bad news and more bad news. That’s when I found out about the true burden of having primary Lymphedema ….. nobody knows anything about it…and you get the feeling you are the only person in the world with it.

I had lots of testing done, and people were freaking out about it. Visibly I have no big signs (except for my one leg), but the tests showed I have huge problems in both legs… When you are lying there under the scanner praying to get good news once, but the doctors think the scanner is broken because there is nothing to see… then you know that you have troubles.

Some of the things they said are still wandering around in this little head of mine:

“I do not know a lot… but I know that for 100% it will get worse.”
“When you will have kids, it will get much worse, you know.”
“And when you have kids, it is possible that they can have this too, because it is
genetic.”

Ohhhh! Thank you for the information! That makes me feel …. really desperate….!!!
But to stay positive, because I will not give in to this situation. What exactly can I do about it to get it better?

“You can do a lot of things, but it will not get better.” Oh!
“But you can stabilize it… With MLD, wear your compression stockings from when you
get up till you go to bed, swim a lot etc.”

Oh!

“And there are a lot of things you can avoid, so it will not get worse!!!”

Oh!

“Be careful with mosquito bites, long trips, alcohol, long standing, heat, warm baths, sunburn, avoid sunbathing, walking barefoot, scratches etc!!!”

Ohhhhhhhh!!!!!

Basically do all the boring stuff and stay away from the fun stuff!!!

I thought my life was over, I could never live with this new situation, but a year and a half later I managed to adapt somewhat to this new concept. The mind is strong and flexible and is the most intriguing thing I discovered the past year. What do I miss? What I miss the most is to be able to live care-free as I used too. I never thought I would miss getting out off my bed, seeing the sun and walking barefoot into my garden.

I might find a solution one day – hopefully but things will never be the same just because I know what I know….But then again I am grateful that I got to live 19 years care-free, unlike some children who are born with this…I started to check the internet and I saw the most frightening stories and pictures… I did not know what to do. That is how I found out about the lymph node transfer … and I jumped on the other roller-coaster a search for a solution!!!” Jessica..

Thank you Jessica for sharing your story.. It is not easy to put into words the daily struggle to find a balance and still live a fulfilling life. Jessica has been in touch with Dr Corinne Becker in Paris and may have a Lymph node Transfer in the future, but it is not an easy decision.

image

Looking after your Lymphedema.. Bandaging kit.. Photo Helensamia

Apples and Oranges…

image

Google images

Over the last few weeks I have spoken to doctors and other patients who have had surgical treatments for Lymphoedema, I have come to the conclusion you cannot compare legs and arms!! In much the same way that apples and oranges are both fruits, they are different! Legs and arms are both limbs, but they are different! Legs are bigger, they do more work, gravity does not help and there is a much bigger volume of fluid to clear, the Lymphatic vessels have to grow through a larger space and bring the lymph up into the abdomen when gravity pulls it down to the ankles!!

image

Google images

Prior to surgery I thought that like the lymph node Transfers to the arm I would start to see results within a few weeks, Sue and Jennifer had thought the same. We were not prepared for the very slow results or the intense Physiotherapy that we would need to see progress. Jennifer is now two years out from the Lymph node Transplant and she has a 20% reduction in the size of her leg. Scans have shown that the transferred lymph nodes are producing Lymphatic vessels so the hope is that these results will continue to improve. Sue is about 6 weeks out from her Lymph node Transfer and she is doing Manual Lymph Drainage three times a week and wearing a Reidboot or Bandages at all times. Me I await a scan on Thursday to see if there are viable Lymph nodes in the transferred tissue. Sue had seen a lady on television who had Lymph nodes transferred to her arm pit and after two weeks her arm was close to the size of her good arm. The reason I started this blog was to build awareness of Lymphoedema and to tell the story of surgical intervention from the side of the patient. Therefore I am  saying that if you have a Lymph node Transfer and/or  Lymphatic venous anastomosis to the leg, be prepared to be very very patient. There is no instant fix but change will happen gradually, the first changes are usually a softening of the leg and a better response to MLD. If you hear that someone has responded to the treatment quickly do not get disheartened as everyone is different. Liposuction to both arms and legs does see instant results but garments must be worn 24/7 as this does not cure the Lymphoedema.

I would really like it if others would allow me to post their experiences of surgery for Lymphoedema or the process of looking into it. I would like to hear about surgery for arms and legs, what led to this decision, have you had Liposuction, Lymph node transfer or Lymphatic venous anastomosis? What is it like to have Lymphoedema both secondary and primary? People sharing their stories leads to a better understanding for others and improves outcomes. I will not use real names so as to respect your privacy. I am happy to edit your post so don’t feel you have to write a perfect item for me even if you give it to me in point form that is ok… Thanks…

Please email Helen at helenbrd@bigpond.net.au

image

Google images

I look forward to hearing from you…

Live Symposium..Overview of Surgical Treatment for Lymphedema… LRF

logoI am posting a link to the latest Live Symposium from the Lymphatic Research Foundation
Dr Chang speaks from the Anderson Cancer Centre on the advances in surgery for Lymphoedema

http://www.youtube.com/watch?v=35JlSdsDzbU

“Video Published on May 23, 2013
David W. Chang, M.D., is a professor with tenure and the deputy department chair in the Department of Plastic Surgery, director of the Center for plastic and reconstructive surgery, and director of the The University of Texas M. D. Anderson Cancer Center in Houston, Texas. Dr. Chang specializes in complex microsurgical reconstructive surgery in cancer patients with primary clinical & research focuses in breast reconstruction and restoration of extremity defects such as lymphedema. Dr. Chang has one of the most extensive experiences in microsurgical treatment of lymphedema and is considered a world expert and a pioneer in this field. Dr. Chang has been named to Best Doctors in America every year from 2001 to 2012. Dr. Chang has over 100 publications and has been invited to lecture at over 80 symposiums and meetings both nationally and internationally and to give over 40 visiting professor lectureships in 25 countries.”LRF

Thank you to the Lymphatic Research Foundation for Creating this Video of the live symposium to allow many others to view. It includes some very interesting facts on the progress of surgery, the need for insurance cover and the difficulties of treating leg Lymphedema with surgery. It covers all types of surgery including Lymph Node Transfers, and lymphatic Venous Anastomoses.

University of Texas MD Anderson Cancer Center

University of Texas MD Anderson Cancer Center (Photo credit: Wikipedia)


Post Surgery Update… Still Waiting!

Unknown

Vivid Festival Sydney.. Google images

I thought it was about time I did an update even though I have little to say, still waiting!!!! Today I went for a physio appointment for MLD. (Manual Lymph Drainage) Although I had flown to Perth last week, had done a lot of walking and sitting in cars, my leg survived without getting to swollen. On the other hand it did not improve either, which would have been nice! Next Thursday is the big day when I will have an Ultrasound done to check for viable Lymph nodes. Thank goodness it is not an MRI, as I thought, so I will not have that noise again, it gave me a headache last time! Noise Tunnel… Bang Bang Bang!   I am also due for another Physio appointment that day for MLD and all measurements, (compared to pre surgery) ready for the doctor the following week. Next week will be three months since I had the surgery, I certainly did not expect to be having all this treatment, Ready Wraps, MLD and maybe Complex Bandaging. Somewhere in my head I thought that this would all get easier rather than harder… Sue feels the same as me too as she is wearing a Reidboot to work and Bandaging her leg at night time to get the swelling down. This makes it very difficult to know if any improvement is from the therapy or the new Lymph nodes….. I am also very confused as to wether the swelling in my knee is Lymphoedema or surgical swelling from the transplant or infection, as it gets worse when I use the knee more…… I guess next week all will be revealed. The emotional toll of all this waiting is also way beyond what I imagined and it is great to be able to share this with Sue and other ladies, as we are able to support each other and understand the journey we are on, at times like a crazy roller coaster!! We are the “Leg Ladies”.

images-2

google images

Much more exciting than all of this is the amazing Vivid Festival that starts in Sydney this weekend.The city comes alive with lights colour and music for two weeks. Here are some photos for you to get an idea of the wonderful atmosphere.     http://www.vividsydney.com

images

google images

images-2

google images

images-3

Google images

images-4

google images

images-1

google images

images-1

google images

images

google images

Unknown

google images

Have a great weekend all…….

Self-exams

I am reblogging this as a reminder to everyone .. Have you checked your breasts this month??? Thanks to Saying NOPE to Breast Cancer for this post.. A quirky reminder …

Saying NOPE to Breast Cancer

You can be a heroine, you can be a powerful villain, but you are not immune. Ladies, do your self-exams! I ❤ this ad campaign created for Mozambique Fashion Week.

Speaking of Mozambique, do you have any gently used-bras you can donate? Free the Girls!

Nobody’s Immune to Breast Cancer. When we talk about breast cancer, there’s no women or superwomen. Everybody has to do the self-examination monthly. Fight with us against this enemy and, when in doubt, talk with your doctor. – Associação da Luta Contra o Cancer (ALCC)

ALCC Wonder Woman

ALCC Cat Woman

ALCC Hulk

ALCC Storm

View original post

Walk a Mile out to sea!!

image

Busselton Jetty.. Google images

One of the joys of our trip to Western Australia was to be able to walk along the Bussleton Jetty which stretches a mile out to sea. A great way to start the day and blow the cobwebs away!!

http://en.wikipedia.org/wiki/Busselton_Jetty
Busselton Jetty is the longest wooden jetty (pier) in the southern hemisphere,stretching almost 2 km out to sea from the town of Busselton, Western Australia. Because the shallow waters of Geographe Bay restricted ship movement, a long jetty was required so that the cut timber could be transported to the ships.
In 1839 Governor Hutt appointed “the place in Geographe Bay opposite the Settlement at The Vasse to be the legal place for the loading and unloading of goods”. Construction of the jetty – originally known as the Vasse Jetty – commenced in 1853 after persistent pressure by settlers. In 1865 the first section, approximately 176 metres, of the jetty became available for ships to moor. In 1875 an additional 143 metres was added to the original structure, as over 10 years’ accumulation of drift sands had made the water too shallow for mooring. The jetty was continually extended until the 1960s when it reached its current length of 1841 metres.
The jetty also features a rail line along its length, which operated commercially as part of the railway line into Busselton from Bunbury.” Wikipedia

image

Busselton Jetty .. Google images

At the end of the Jetty is an underwater observatory where you can view the sea life through windows. Fascinating ….

“The culmination of 10 years of planning and fundraising resulted in the opening of the Busselton Jetty Underwater Observatory on 13 December 2003.

Located 1.7 kilometres from shore at the end of the Jetty, the Underwater Observatory has been designed to accommodate up to 40 people at one time. Descending 8 metres beneath the waters’ surface, visitors can view the amazing corals and fish life through eleven viewing windows, at various levels within a 9.5 metre diameter observation chamber.

Described as Australia’s greatest artificial reef, the Busselton Jetty, with more than 300 individual marine species, is host to an awe inspiring “forest” of vividly-coloured tropical and sub-tropical corals, sponges, fish and invertebrates. Each year during autumn and winter, the Leeuwin Current brings a narrow band of warm water down the Western Australian coastline.

image

Photo Helensamia

This warm southerly current is responsible for introducing an incredibly diverse array of tropical and sub-tropical species into Geographe Bay, resulting in coral growth at a latitude of 33 degrees south. This is a remarkable phenomenon when compared to the western coastlines of other southern hemisphere continents such as Africa and South America which have no coral growth below 5 degrees south.” Busselton Jetty 2011

image

Photo Helensamia

Sue Starts Manual Lymph Drainage

Follow my blog with Bloglovin

Reid Sleeve

ReidSleeve.. photo Peninsular Medical

Today I am continuing the updates from Sue who has started regular Manual Lymph Drainage as the next stage of her treatment. She is using a ReidSleeve boot like the one above as opposed to the complex Bandaging as you can take it on and off as needed. These are created by Peninsula Medical and are available for legs, arms and hands. Please click on the link below for more information.

photo

http://www.lymphedema.com/rsleeve.htm

The ReidSleeve (U.S.Patents 5,904,145 5,916,183 5,196,231) is made from a soft foam core. This is specially designed to provide a gentle gradient pressure. The pressure exerted on the limb (arm or leg) is controlled by a series of Velcro® straps. This design allows the compression to be precisely tailored to the patient’s needs. The sleeve easily slides over the affected limb and then the compression straps are adjusted.

The outer shell is made of durable, attractive nylon, available in many colors. The inner lining is made of a blend of cotton and lycra to provide maximum comfort while maintaining effectiveness.

Control of edema in the hand and wrist area is critical. The ReidSleeve incorporates conforming plastic plates to provide consistent, effective pressure to this critical area. The data from the original study demonstrates that the ReidSleeve is highly effective at controlling edema in this area. In a 4-week study, edema in the hands of affected patients was reduced by an average of 80%.

A specially designed gauge (U.S. Patent 5,904,145) is used to assess the pressure exerted over any region of the limb. The gauge is as easy to use as a blood pressure cuff. This simple procedure insures that compression applied to the patient’s limb is consistently applied and in the proper range to provide optimal results.

Patients can fit the sleeve in minutes without assistance and have the confidence of knowing they are applying the most effective pressure. As the patient improves the ReidSleeve can be adjusted to the new limb size thereby maintaining the proper pressure range.

Advantages

photo

Reidsleeve.. boot.. photo Peninsular Medical

•FDA Class I (880.5160)
•Higher compliance than wraps or pumps
•Less expensive than pumps
•Easily applied in minutes by the patient
•Quickly and reliably adjusted to a precise and consistent pressure
•Can be easily fit and followed by physician, nurse or therapist
•Comfortable
•Provides the patient with effective therapy, while raising self-esteem and encouraging self-reliance
•Quality materials and manufacturing in the USA
•Developed by a physician

Sue says
“I am with you as to this being an up and down emotional journey. I started MLD therapy last Monday (am going three times a week for a month at least). I wasn’t real happy when my therapist measured my leg and it was far worse than it had been when I started the second series of MLD treatment from 12/2011 through 4/2012. I am hoping that because she had not seen my leg right before the surgery, that this may not be as bad of news as I thought. I am wearing a Reid Sleeve for now, since it’s easier for me to wear this big compression “boot” from toes to hip than dealing with the foam compression and elastic bandaging. But if the swelling is not significantly better by this Monday, I am going to have to use those darn bandages. I personally see small changes in my leg, and I am just going to have to be patient. The surgeon said 6-8 months to see if it worked.

If the surgery is successful, then he will do the liposuction to clear out the fat and protein that have settled in the leg, but again only if the surgery is successful.

I have now returned to work and am glad that I did. Thirty days out of work is enough! I wear the big boot all day and just remove it when I have to go out to lunch or anywhere in public. I just don’t want the stares or questions. It looks like I have a broken leg. Who wants to go into details about lymphedema and now the surgery with strangers who have no idea how difficult living with lymphedema is!

Also, I am back to using my pump daily at the instructions of the therapist. I seem to think it helps to use the pump along with the compression boot. When I stopped using it for a few days, I didn’t notice any increased swelling but no less swelling either.

I was happy to read Jennifer’s post. It is good to know what to expect later on down the road!…” Sue

To all the mothers out there I would also like to say a Happy Mothers Day today

Unknown

Google images

Waiting!

Unknown

Google images..

I have not been writing any posts about my progress as I am awaiting a Lymph MRI at the end of May and will see the Doctor on the 7th June. This MRI will show if there are any viable Lymph Nodes in the transplanted tissue or has the infection damaged them. To say I am not dealing with this is an understatement, my emotions are up and down, I am very, very scared that all this has been for nothing. I cannot blog about this at the moment, but will share other’s stories and progress, plus share with you next week our trip to Western Australia, which I am looking forward to. I need to get away from doctors, physios and hospitals for a while. Yes I do have to fly so will be wearing compression stockings on both good and bad leg!!…. Oh the joys of having Lymphoedema!!

Monkey Mia, Western Australia

Monkey Mia, Western Australia (Photo credit: siska maria eviline)

On being a Carer… My wife has Mesothelioma

I have been asked by Cameron to share an article with you about his role as a carer to his wife who has Mesothelioma. Often the partners and carers of those of us who have cancer are neglected and the wonderful role that they take on. We do not hear them complain but at times it must be very difficult. His blog and other articles are also insightful, bringing awareness to  his role and his wife’s surgery.  In sharing he hopes to build understanding of Mesothelioma  and how it feels to be a Carer .

English: Mesothelioma of the left lower lung.

English: Mesothelioma of the left lower lung. (Photo credit: Wikipedia)

This a link to Cameron’s Blog … Please take some time to read it…
http://www.mesothelioma.com/blog/authors/cameron/

What Cancer Taught Me and My Family

“My wife has said on many occasions that she doesn’t know what I went through when she was diagnosed with mesothelioma. It was three months after the birth of our daughter, Lily. We were so overjoyed and happy with our daughter, full of excitement at the prospect of what the future might hold for our new little family. We had no idea that all that would change when her doctor looked at her and told her she had cancer. I watched as Heather cried at the news, and I wondered how in the world we were supposed to get through something this awful. I was on the verge of a breakdown when the doctor’s comments about medical decisions forced me to focus on our terrible reality.

More than anything, I was so angry. I was angry that my wife had cancer, and I spent a great deal of time and energy on angry outbursts of profanity. It took me a little while to realize how selfish I was being, and I realized that the last thing my wife needed was to see how scared I was. I knew I had to get my emotions under control. It wasn’t easy, but eventually I was able to get to together, and from that point on I did my very best to be nothing but a source of hope and optimism for my family.

I had such a long to-do list that included everything from my job, to making travel arrangements for doctors appointments, to taking care of my family, our pets, etc, that I almost couldn’t handle it. I was overwhelmed. I had to learn to prioritize and create a plan. I also learned to accept all of the generous offers of help that came from our loving community. I realize how blessed my family is to have such amazing loved ones in our lives.

In February 2006, Heather and I traveled to Boston for her extrapleural pneumonectomy surgery. While we were in Boston, Heather’s parents were caring for Lily at their home in South Dakota. We had a decision to make. I had to work, and I couldn’t give Heather and Lily the constant care that they needed while working full-time, so after the operation Heather went to South Dakota to stay with her parents while she recovered and prepared for the next phase of her treatment. They were gone for two months. It was so hard being away from them, but it was necessary.

I saw my family one time in two months. I drove through a snowstorm on a Friday night after work and had to do it again on Sunday so I could be at work Monday morning. The drive is 11 hours one way. It was hard, but it was so good to see my family. I don’t regret making any of the difficult decisions we made, because they were decisions we were lucky to be able to make. This is something I learned throughout Heather’s diagnosis – never regret the tough decisions that cancer forces you to make. Instead, take comfort in the fact that you retain the ability to make decisions at all. I also learned that you just have to accept the help that is offered to you if you ever plan on making it through these difficult days. I am forever grateful to those who helped us overcome this time in our lives.

Heather has now been healthy for more than six years, and it is such a blessing. I hope that this story, and my experience can help someone else who is suffering from cancer to get through this very difficult time”…. By Cameron

I would like to take this time to thank everyone who has ever taken the role of Carer… You make it possible for us to focus on getting well.. Thank you
image

This is a link to a story from Susan who’s husband died of Mesothelioma … I have been asked to share this in his memory and to help others… Thank you Susan

http://cancervictimsrights.org/memories-that-inspire-my-story-of-hope/