Sharing experiences


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. Thanks


13 thoughts on “Sharing experiences

      • Helen,
        I am having lymph node transplant on September 2nd. I am excited and afraid at the same time. Please email me so I may keep this private. Your site has answered many questions but I have so many more that I would like to ask. Feel free to email me :

        I had a robotic assisted radical hysterectomy, bilateral salpingoopherectomy with lymph node dissection for cervical cancer. I had one positive node so was told I had to have radiation and chemotherapy I suffered nerve damage in my right thigh immediately following this surgery. A couple weeks after treatment ended my right foot and ankle was swollen. Swelling traveled to my calf, knee, and right thigh. Then my groin, abdomen and right buttock. I have been battling lymphedema since.
        In April I was hospitalized for celluilitis. Discharged with IV antibiotics for ten days.
        I am hoping that this surgery will give me relief so I can walk easier and not have to worry about infection. Looking forward to hearing from you. You are an inspiration to me and I am so happy this surgery has been successful for you in your life.



  1. Hi Helen
    Thanks for all this info, it’s great! I have had lympheodema for 6 years, initially in my right leg & thigh and then in the pubic area (embarrassing!) following cellulitis. Lympheodema developed 5 years after a radical hysterectomy and radiotherapy to treat endometrial cancer.

    I would be very interested to know if the lymph node transplant option is still open here in Australia, and if so how I go about applying, cost etc? I did visit Mt Wilga about 4 years ago and had an appointment with Helen, but at that time just came away with the basics in self management. I live in Coffs Harbour but would be happy to travel down again if there are now more options, especially the lymph node transplant process you describe. I am particularly interested in this because it is very difficult to do anything with the pubic area compression wise and consequently my life has become hugely constricted by not being able to sit for more than about 20 minutes at a time ( has meant having to stop work, travel, even going out to dinner is a challenge). So, I see the possibility of a lymph node transplant alleviating some of this and potentially preventing progression to the genitals (another nagging fear).

    Do you think it would it be worth my contacting the Doctor at Macquarie?

    Good on you for going after an answer to your lympheodema and for sharing that with othrrs. I’m so glad you found the thing that would help!

    Thanks for listening & warm regards


  2. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  3. I have learned so much from your fabulous blog, Helen. Thank you for sharing your story and the stories of so many others.

    • I too have learnt so much about Breast Cancer from you and others… There was so much I was not aware of … I was probably guilty of being taken in by all the “pink” which in no way represents the full impact of BC… Thanks you

  4. Helen, thank you for sharing your story, and I know you’ve helped others. I love the quote at the beginning of your post. I agree totally. I would like to think my blog has helped others, and I know it has helped me.

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