STORIES and COMMENTS
This space is for anyone who wants to share their stories / experiences or problems with Lymphoedema.
‘How did I get to the age of 50 before being diagnosed with Lymphoedema?
‘Perhaps being born in the late forties and living in a small village in Yorkshire, my doctor wouldn’t see many cases of it and as he was ‘getting on a bit’ himself maybe it wasn’t known to him.
‘I was just ‘the big girl with the legs’!!
‘The years rolled on, married , husband in the RAF, the first sign of trouble with the legs came in Singapore where, for the first three to four months, insect bites resulted in large filled blisters (known locally as monsoon blisters). The RAF doctors advice – ‘don’t get bitten’
‘The problems got worse from then, any insect bite, graze or bruise resulted in cellulitis and therefore anti-biotics but still no diagnosis, eventually leading to three stays in Leicester Royal for intra-venus anti-biotics.
‘It was now affecting my work and home life so I asked my GP for a referral to a specialist and as I offered to go privately it was no problem. What a relief – as soon as he saw my legs he said ‘you have lymphoedema’. He then explained it was genetic, I had had it from birth and that treatment was limited. Long term anti-biotics and eventually a referral to LOROS followed. The relief of knowing it had a name was immense. I could look it up, read about it and learn to live with it. Now I knew why my legs looked as they did and felt as they did.
‘Meeting Jane and others through LLSG has been great, helping me realise I’m not the only one. Thank you all.’
‘How can retailers suddenly stop selling something you have been using since Adam was a lad??
‘No I don’t know either.
‘For as long as they have been in business I have been using the Body Shop Aloe Vera lotion and it has been great, managing to keep the old skin soft and supple – no mean feat! Then suddenly they decided to stop selling it; I managed for a while to get supplies off ebay but that source eventually dried up (except from America where including postage the cost was about £14 plus ) so I embarked on a search for a suitable substitute!
‘I’m glad to say that after exhaustive trials and much stamping of feet I have found something that does the job wonderfully well from of all places Aldi. Their Lacura range is fab- soft skin, no itching and best of all under £2 for500ml!! The white bottle is great for every day and the blue bottle is gorgeous if you have a bit extra time as it is thick and unctuous but takes a little while longer to absorb!!! (I love that word unctuous and I been dying to use it!!)
‘So if you are looking for a body lotion give Aldi a try… let me know what you think.’
‘Seventeen years ago I was told I had cancer. I didn’t really have time to think about it too much because everything happened so fast—major operation within days followed by radiotherapy after a few weeks. The diagnosis was given in August just as I was about to start the new term with a new class of 5 to 6 year olds. I was a primary school teacher and thoroughly enjoyed my job but little did I know that that was to be the last time I would teach.
‘By Christmas I was feeling much better except for one thing—my left leg felt very uncomfortable with a dull ache and I thought the thigh was swollen so I went to the GP who said that I’d been through major surgery and now that I was moving about the muscles in my leg were feeling a bit stiff but would soon be alright. How little did he know!
‘By mid January things were no better and feeling very upset I rang BACUP the cancer counselling service who gently talked to me asking various questions. Eventually the man’s voice at the end of the phone said “I think you’ve got Lymphoedema.” At that point my mind went blank—I’d never heard the word before.
‘The gentle voice continued “But I think I’ve got someone who can help you, just stay on the line.”
‘Through that phone call I was put in touch with Sister Ball at The General Hospital and eventually she put me in touch with Sister Alice at LOROS.
‘By now it was 1995 and the clinic consisted of one tiny room with a bed and a desk and Sister Alice could just about get round the bed to measure my leg.
‘ Haven’t we come a long way since then!’
‘So here I am – mid 50’s and have had Lymphoedema all my life, both legs and latterly both hands. Does Lymphoedema impact on my life ? – yes most of the time, what with having to wear compression all day everyday; exercising; looking after my skin and not knowing what the legs will be like on any given day – it can sometimes be a pain – literally! Do I cope? – sometimes yes and sometimes no!
‘There have been some bad times; a horrible primary school boy who wanted to poke my legs with a stick to burst them; constantly having to buy clothes to ‘hide’ my legs; multiple cellulitis attacks; 3 debulking operations; 2 hip replacements and being medically retired after 22 years full time work.
‘However there have also been some good times; getting married; having 2 boys – neither of whom had Lymphoedema; buying a pair of full length boots following a debulking operation – they don’t fit now; seeing wonderful art /plays/concerts etc; having good friends who don’t even mention Lymphoedema; having good friends who have Lymphoedema and can talk about it.
‘All in all having Lymphoedema is a bit of a roller coaster and it does mean you have to do certain things and you can’t do others but sometimes I even forget there is a problem!!!!!!!!!! ‘