Talking to Busom Buddies, Nuneaton
I love talking to people, to be with people and I am always thrilled to be asked to give a talk to groups within my local community about lymphoedema. Movement in the UK is less restricted as many of us have been doubled vaccinated against Covid-19. While hand sanitising, mask wearing, and social distancing is still very much in place as most of us have been ‘safe at home’ for the last 18 months. On the 9th of June I ventured out to give a talk to Busom Buddies a friendly cancer support group attended by ladies who have all had a diagnosis of breast cancer. Some of the group sadly had also been diagnosed with secondary lymphoedema.
It was an exceptionally hot day and given the fact I had not ventured out much over the last 18 months there was some trepidation on my part. This was compounded by the fact that much of the information I usually take with me was very much out of date having sat in my wheelie (exhibition) case for the last 18 months. However, with this friendly group there was a sense that my presence was about telling my story, talking about lymphoedema and for the group to ask questions on how to look after their lymphoedema.
Selfcare is such an important part of lymphoedema and in an ideal world we would all have supported selfcare. Saddened by the fact that several of these ladies had not received any care whatsoever, one lady could not get a diagnosis from healthcare professionals for various reasons, and another lady had been diagnosed with lymphoedema when in my opinion she had lipoedema. I cannot diagnose and therefore, all I could do was suggest that she contact Lipoedema UK. The lack of support these ladies were experiencing was evident.
We discussed all aspects of living with lymphoedema from skin care, the importance of compression, and why movement is essential. Because it was such a hot day teas and coffee were replaced by diet coke. This provided a' giggle slap on the wrist' moment when I could tell them off and explained why fizzy drinks are not good for lymphoedema and the water I was drinking was preferable.
It is important for those of us who live with lymphoedema to drink more water
Don't be tempted to think the opposite - Lymph fluid is high in protein
To remove protein from your tissues you need water
Drinking water, means "protein-traffic" moves better around the lymph system
This was a lovely afternoon and I thank Corinne Morgan who organises the group for inviting me and it was lovely to catch up and talk face to face with Sue Sanders who is one of our moderators on Facebook.
Time for reflection
Why after 10 years since my diagnosis am I still surprised and annoyed to hear that these ladies received no information to the possibility of being diagnosed with lymphoedema? Why aren’t these ladies being given the support they need for their lymphoedema? Some of their stories beggar belief and there are more questions than answers:
Why are cancer patients still not being warned about the possibility of being diagnosed with lymphoedema?
Is it because healthcare professionals think we are only capable of dealing with the cancer diagnosis?
Why is there no lymphoedema long-term care plan in place for this lifelong condition?
We need the information - to make informed choices
We are supposed to be living in a society where patient-centred care is part of the treatment plan. Care plans should be conducted through a Holistic Needs Assessment (HNA) for a person-centred approach, and this should not only include the individuals needs but the information they need to live with lymphoedema. If we are to improve the quality of life for those diagnosed with lymphoedema then the patient must receive decent quality care, not be provided with the outdated and minimalistic information that is currently given.
One interesting question is emerging repeatedly not only at my talk with Busom Buddies but online in our social media “Could I be predisposed to lymphoedema”? I have my own views on this subject, and this is very much a question for the future.
Finally, my friend Maxine Tuffin from T & S Photography came along and took photographs as part of a photoshoot she was doing for me. Lots of nice photographs.
Thank you to Busom Buddies for having me if you live in the Nuneaton Area this friendly group would love to see you, they meet on the 2nd Wednesday of the month at:
Weddington Social Club
Weddington Road, CV10 0ER
Contact: Corinne Morgan
Busom Buddies donated £25.50 towards our funds which I am extremely grateful for. We receive no official funding please support L-W-O Community by making a yearly donation so that we can continue supporting those living with lymphoedema through our social media and websites.