some reflections on my lymphodema 2 year on

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Hi fellow lymphies, or those keen to prevent it. As this is a quiet part of the forum I thought I would add my thoughts / experiences.

After axillary clearance and rads I got mild lymphodema two years after cancer, following a flight to Greece and a mosquito bite. I was devastated, and my whole arm and hand were huge, and then I had to fly home without a sleeve!! Very frightening.

I got a GP referral to the local specialist service , where I got a 6 week training course, and four appts at six month intervals. I now have only 1 -2 % increase in size to the affected arm.

I wear a sleeve almost permenantly, and have stopped wearing the glove as no longer have lymphodema in lower arm. I exercise every day - adapt pilates classes to suit me ( ie no pushing or pulling, minimal weight bearing), I go to the gym and do similar, I swim, I work on the allotment and acost young men to do heavy work for me, but mainly I sing - I promise you singing is amazing - if the arm swells, which it does on occaision I sing, it must be the breathing, but it goes down a treat. Happily for all around me I can sing in tune!

I did do my own massage as instructed at the 6 week course but I just couldn’t get on with it for a daily routine, so now I only do it in emergencies.

I feel as tho I have a permenant disability that I have to constantly think about ( ie very visible bandage on arm for a ceildah so people don’t pull and wrench at my arm!) but given that its fine.

I also got some very swanking sleeves from the states for times when I don’t want to wear beige!

they cheer me up no end - there is even one for hospital visits that says in bright yellow - NOT THIS ARM!! hahaha

So just to keep this little area of the forum active and to share my experience.

All the best to you other lasses on here,

Moorcow.

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Thank you so much for this post.  The risk of lymphodema was the one thing that I struggled to come to terms with throughout my cancer treatment. It just seemed so frightening at the time and I would spend hours trawling through the internet for information.  I think it was the fact that there was no cure that makes it such a hard diagnosis, although with new treatments, such as supermicrosurgery are very encouraging.

 

It is two years since I had my ANC (neo adjuvant chemo, lumpectomy, and radiotherapy) and whilst I have not developed lymphodema, I am acutely aware of the risks and take many precautions.  I am sure I will relax more as time goes on but posts such as yours help me to understand that it is quite possible to enjoying living life with lymphodema and it IS possible to reduce the swelling.

 

Thank you very much.

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Where do you live Moorcow that you get such good treatment?

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Moorcow thanks for such an inspirational useful and uplifting post. It is something I am worried about especially as we are looking at some long haul flights shortly and what might happen if it occurs while I’m away

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Hi all

           I have had lymphodema since July 2012, I am fortunate to have a very good back up and lym[hodema clinic at the Royal Marsden that I can call upon anytime if im worried, I had micro surgery in may this year a new-ish treatment to try and alleviate lymphodema and it is the best thing I have done, I still do the exrecises to this day and although I do forget sometimes Im pretty good, I wear my sleeve still from morning to bedtime its just part of dresssing now and my arm is looking so much better, if it wasnt for the tan on my good arm most people would not notice now… I know I am fortunate to have had such great treatment and many are not as fortunate and this is so unfair, the same treatment should be available for all !!

My Dr is also fab when I go away he always arms me with antibiotics just incase …  Lymphodema is horrid and I was mortified when i found i had it I am just praying the improvement in my arm keeps on as there is no certainty that it will , so keeping everything crossed

 

Love to all xx

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Hi Moorcow

How are things going with you now? I have had lymhoeme for many years and no one seems willing to. Do microsurgery on us older ladies! Have you any suggestions
Moijan