October has been the strangest of months there have been some good moments, and some not so good. As a family we have had many falls this month as the clocks go back and we 'fall back' into winter I am in a reflective mood but I am also going to have a rant in this blog so be warned.
On a personal level I had so many plans for the things I would do sadly, due to unforeseen circumstances very few materialised. I did achieve a long-time goal to write more about Cancer Related Lymphoedema (CRL) and Breast Cancer Related Lymphoedema (BCRL) which were published in two separate webpages, which I will write about further down.
Hubby’s and my health took a nosedive and I think between us we spent more time getting blood tests and X-Rays than either of us would like. Now it looks as if we have both got new health issues to deal with. My youngest son, his wife and two young children all had Covid-19, probably came from the schools, but who knows. Thankfully, both my son and his wife were double jabbed. As you can imagine we were on edge the whole time as we nearly lost one of my sons early in the year to both Sepsis and Covid. I am please to say all have come through reasonably unscathed. Really scary two weeks and of course not being able to see the grandchildren was upsetting. So, October has really thrown us all off balance.
The upside is that we celebrated a friend’s 80th birthday and I did get to see one of my friends and have a girly lunch date which is something that hasn’t happened in a long time. Beginning to feel a bit of normality.
My other highlight was the #BLS2021 Virtual Conference which was a great success and there were new learning experiences. The British Lymphology Society (BLS) are also concentrating on lymphatic health which L-W-O has been doing for a couple of years. In addition, there were several great presentations on BCRL which is my type of lymphoedema and in my opinion very much neglected in the past. When I get my head together, I will write a blog on the conference. In the meantime, the blog I have written for Physio Pod’s November news magazine covers some of the conference.
I would like to take this opportunity to thank Jane Wigg for answering our members questions which is a mammoth task and I know how busy Jane is so a big thank you from all of us at L-W-O Community. Mustn’t forget Mary and all the amazing videos she has produced which helps to visualize the answers to our members questions.
I was thrilled to see Matt Hazledine’s book published “How to live better with Lymphoedema – Meet the experts”. It tells the story of Matt’s journey of being diagnosed with lymphoedema in 2011 the experts he met along the way, and his management techniques. There is a chapter from me on the value of support groups like ours.
L-W-O Community’s ethos is all about providing education, information, and community engagement from a patient point of view. Not everyone will agree with what we do and that’s okay. However, having had breast cancer and lived with lymphoedema for over 10 years educating people is so important.
Which is why this part of living with lymphoedema is a difficult topic to cover, but one that is real and hurtful. The topic of other peoples unguarded words have a devastating effect on our mental health and while there is support for those living with cancer through the various cancer charities or online cancer support groups it isn't the same for all. Unfortunately, there is very little professional long-term mental health support for those who have lived with lymphoedema for a number of years. Which is why an online support group like ours become so important, because we provide a place to chat, ask questions, find answers, and have, if necessary, a rant. In simple terms we give our members a much-needed voice. Our support group is friendly, positive and focussed on the management of lymphoedema and understanding lymphatic health. However, apart from highlighting the issue there is very little we can do about the crass and thoughtless comments myself and our members endure. Here is a sample of some of those comments.
To someone who is living with terminal cancer – “I am sure you will get better soon”.
“You didn’t have proper cancer because you didn’t die”.
Member’s family member – “I am sure its all in your head”.
"What your lymphoedema can't be incurable because you look fine".
Grandparent – “You are paying for your mother’s sins”.
Asked by a physio to give a talk to students so that they could see her lymphie legs one student said, “Gosh they look like chipolata sausages”.
Sadly, the ‘you are just fat remark’s' whether directed at a limb or the whole body are all too common, too numerous to mention and quite frankly inexcusable.
I could fill several pages of how thoughtless comments can have a devastating effect on our members mental health and this is one reason we need to do so much more to educate family, friends, and the public on what it is like to live with lymphoedema whether it is genetic, cancer related or from trauma or injury.
To be diagnosed with any form of cancer can be devastating but to then be diagnosed with lymphoedema as a direct result of cancer treatment is a double whammy. Once the lymphatic system is damaged, we focus on the successful ways of managing lymphoedema. Therefore, our new cancer related lymphoedema webpage explains what can cause CRL and how to lower your risk and the treatments options available.
After treatment breast cancer related lymphoedema can cause damage to the lymphatic system and therefore we focus on supported management through a qualified lymphoedema specialist. However, lymphoedema does require those of us who live with this condition to treat and selfcare for ourselves daily. Therefore, this webpage concentrates on the symptoms of lymphoedema, recognising changes and reducing risk, recognising infection, reducing, and treating infection plus much more. So do look at both pages.
November L-W-O Community will be focussing on selfcare week so do join us and please share our posts.
One final word from me for October. We receive no official funding, myself, and admin volunteers receive no salary. Our time is volunteered freely so that we can improve the lives of others living with lymphoedema. No amount is too small, and any donations received are very much appreciated so that L-W-O can continue to support those of us who live with lymphoedema through education and information. Gaynor
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