I have just read Amanda Jessup‘s facebook post on Lymphoedema developed from the treatment of cancer. I met Amanda through Shelli and both Shelli and I had also developed Lymphoedema and I could not describe the condition any better myself.
March 6th, 2018
So with Amanda’s permission I have published her post to spread the word that changes need to be made for everyone and to read the true feeling of a Lymphoedema sufferer.
There has been times, that I wanted to chop my arms off. Imagine someone pumping you so full of fluid that you can’t make a fist as it’s too painful. Then imagine that never draining away. My arms became so heavy that my shoulders & tendons are damaged. As I’m like a body builder without doing the training.
Physio treatment, compression sleeves are a daily & weekly part of my life. I can’t wear my wedding ring anymore, buying clothes I’m always thinking will my arms fit. Educating medical teams why they can’t take blood or blood pressure from my arms is tiring.
Worried about if holiday destinations have mozzies. Paranoid if I get a cut as the risk of infection is increased with Lymphoedema. The list goes on and now I’m boring myself.
I’ve just had very new surgery to my left arm which will hopefully decrease the lymph fluid retention by creating a new connection straight into my veins.
If it works even 30% will be better ( so far my arm is softer) but I can’t have it on right arm. Why? Someone in Medicare decided that you can’t get it in both arms. Even after a double mastectomy & full ancillary clearance.
So that’s why I’m sharing. We need to be aware, better treatment & education straight after Cancer treatment, medical teams need to be educated. MBS number created so it can be treated with less financial strain. Eg my compression sleeves are $800.00 and I need to replace them twice a year, my treatment is $90 a session.
I would like to see a change.
Thanks for listening and being part of my journey.
March 8th, 2018
Amanda has since visited her surgeon and clarified a few details with Medicare.
Ok I made a boo boo – I can have the lymphatic surgery, it’s the fat grafting I can’t have ( this soften the scar tissues and stops the scars sticking to my bones) still sucks and that needs to change.
So once I’ve recovered and see the true results, we can book in the other arm for later in the year. So far my arm is reducing!!
So we can now stop wanting to kill Medicare lol
#WorldLymphoedemaAwarenessDay #Lymphoedema #lymphoedemaawareness #cancer #kitforcancer #TheKitFoundation