Sometimes life does not go as planned!!

image

I am sure that those of you who have followed my blog over the past couple of years will wonder why I have not done an update of my own progress. March 2015 was the two-year anniversary of my Lymph node transfer and I am very happy with the results, not a cure at this stage but a huge improvement. There will be more on this later…

The reason for my lack of posting is I have been very ill with another late stage effect of radiation and cancer treatment. I started to experience weakness in my legs, I had falls, my legs felt numb combined with pins and needles,(peripheral neuropathy) gradually it became harder to get up stairs and to walk in general. December 2013 was my first appointment with a neurologist…. 2014 was a very difficult year, full of doctors appointments many, many tests, scans, a biopsy, neurological tests etc. I was seen by two neurologists, an immunologist and also visited a Clinic that specialized in Functional medicine.( Combining alternative medicine and conventional medicine).By the end Of 2014 I was given the diagnosis of Radiation Induced Lumbar Plexopathy, a very, very rare and untreatable side effect of radiation that leads to paralysis of the legs due to damage to the nerves in the Pelvis. http://emedicine.medscape.com/article/316604-overview#a0101 Women who have had Breast cancer treatment can get Radiation induced Bracheal Plexopathy which leads to weakness or inability to use the arms and hands.

The first three months if this year was spent in hospital, doing intensive neurological rehabilitation, in the hope of regaining the use of my legs. Sadly this did not happen. While in hospital I learnt to use a wheelchair, and everything else I would need to manage with paralysed legs. We have had to sell our house and we will be moving into a home that is wheelchair friendly. Thank goodness for the help of those physios and occupational therapists who got my life back on track while I was in hospital. You can imagine there has been many tears coming to terms with this and I never imagined I could have something healthwise that was worse than the Lymphoedema!!!

It is very hard for me to write this, only 0.16% in 1000 of those who have had pelvic radiation  get this side effect. It can happen from 0-30 years after the radiation. It is difficult to get information and to connect with others but via the internet and the American Cancer Society I have connected with a couple of ladies. This is certainly not something they tell you about when you are having Radiation!!! No I am not starting a new blog at this stage, or trying to build awareness of this side effect!!! All my energy goes to getting through each day and learning to live with my new “normal”.

However even with all this the Lymphoedema journey still continues with I feel good results. Due to my illness I had to withdraw from the research program at Macquarie University Hospital Sydney as I could not have the MRI or Lymphoscintigram done. The measurements would also all be effected due to the muscle wasting of the legs, due to lack of movement. Since the start of the year I have not worn compression stockings, they are difficult to get on and uncomfortable on the sensitive nerves in my legs. Surprisingly my legs have stayed really good without compression. They are soft all the time, a bit of swelling in the ankles goes down over night and I have had no cellulitus since the surgery in March 2013… My lower leg is the same size as my good leg and the thigh a little bigger but does not get worse. Maybe a transfer to the groin as well as the one to the knee would have helped this but there will be no more surgery for me now!!!!

One of the things that is important for Lymphoedema is movement so on the recommendation of the rehabilitation doctor in the hospital I got a MotoMed machine http://abilityinmotion.com.au/products/movement-therapy/motomed/ This has been the best thing I could have done for the Lymphoedema and for my paralysed legs as it keeps the muscles moving and keeps the circulation going. I am unable to peddle, so the motor kicks in and I can do 25km of passive exercise plus I usually do 5km of active exercise, with my arms, for the upper body. This and deep breathing every day helps to keep my Lymphoedema in order, plus I elevate the end of my bed at night to help any swelling. Even the ankle on my good leg swells a bit sitting in a wheelchair all day, so there is double reason to look after my circulation.

I intend to keep this blog going and to share people’s stories and their progress. It has become quite a useful resource for those going ahead with surgery for Lymphoedema. Over the past two years I have noticed an increase in those having LNT and Lymphatic Bypass surgery, LVA, plus Lymph sparing liposuction to help their Lymphoedema, in both arms and legs. I think we are yet to find a 100% cure but there appears to be improvement, how big the improvement depends on the condition of the limb pre surgery and the care given post surgery. It can also take a number if years to see the ultimate response to surgery. Please keep sending me you stories and adding your comments to the posts, it is this sharing of knowledge that helps. Of course non of this replaces the advice of the surgeons who are looking after you, I am also glad to see that some of them are collect data on their results.. This is so important for the future…

Thank you to all of you who have supported me in the past year and who were aware of my problems, you have made it all a little easier to get through. Everyday for me is now a new experience……

If you would like to contact me please send an email to helenbrd@bigpond.net.au

image

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!!

image

image

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!

image

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/

image

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

Health Tip..

image

Always looking for natural health tips to help boost our immune systems.

This is also a link to an article to help our lymphatic system. When you have Lymphedema it is always helpful to keep your body as healthy as possible, so as not to put extra stress on the already fragile lymph system.

What do you do to help your Lymphedema?

http://www.elephantjournal.com/2014/05/increase-vitality-boost-immunity-look-radiant-in-15-minutes-a-day-kimby-maxson/

“We are all taught about out circulatory system, our nervous system, digestive system, reproductive system, respiratory system and skin, but not many of us know a thing about the lymphatic system—yet if this system stopped working we would die within 48 hours.” By Kimby Maxson from the above article.

image

I am blogging for Mental Health

image

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

A Journey With A Purpose. . .

Hi Elizabeth I am reblogging this to show people the difficulties of living with Lymphedema. I also want to share your words of warning about the sun and checking your skin regularly. In Australia with our harsh climate this is a very real problem… Thanks for your honest account right down to the shower chair…

Lymphedema Awareness and Breast Cancer

imageReblogging this as it is such an important topic after treatment for Breast Cancer… It is that nasty hidden secret known only to those who have it or live closely with someone who has it… Thanks so much Denise

March is Lymphedema Awareness Month.  I deliberately posted this toward the end of the month because we all put Lymphedema at the end of the line in Breast Cancer.   As someone who lives with the realities and challenges of Lymphedema every day,  I am passionate about warning Breast Cancer Patients to PAY ATTENTION and get help and information about Lymphedema.  Make sure you have attended a Lymphedema Class and  arranged a consultation with a Lymphedema Therapist immediately after breast surgery.  Preventative actions, treatment and knowing what to look for can help your future in a big way.    

If you even have had one lymph node removed, you can get Lymphedema. Surgeons and Oncologists may tell you otherwise.  Do not listen to them!  I have had plenty of letters from women who had been told, “Don’t worry, you aren’t at risk for Lymphedema” by a physician and then BAM!  Lymphedema hits in full force…

View original post 228 more words