Welcome to the community Sisistraw although I'm very sorry to read how difficult it has been to manage and live with lymphoedema over the last 10 years. It sounds like it's been really tough.

I think we have a few members on the forum - one of which is our lovely regular [@Jolamine]‍ - who have had to contend with this since finishing their cancer treatment so hopefully she and some of the others will be along soon to share their experiences and advice.

If you feel it would help to talk through your thoughts and concerns with our team of our cancer nurses they are available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

Kind regards,

Steph, Cancer Chat Moderator

Thanks, Hopefully at some point someone would have an idea what to do. I've been told there are great hospitals in Israel that deal with lymphodema but I can't find anything. 

Fingers cross the NHS will soon take this problem seriously and will find a solution.

Regards

Hi Sisistraw,

I am so sorry to hear about your lymphoedema. I have had it in both arms since I had a double mastectomy 10 years ago. I first attended a self-help course, where I was taught how to bandage my arms myself, but found this difficult to manage for both arms.

I am fortunate that I was then referred to a specialist Lymphoedema clinic about 2 years after surgery. The staff there have been wonderful and so helpful. I am still seen every 12 weeks for 2 weeks. I get my arm measured in inch graduations from my fingertips to the top of both arms. I then get a massage which induces manual lymphatic drainage and wear compression sleeves which cover the base of my fingers to my shoulders.

In the early days, my arms were both bandaged in 5 layers of compression bandage and I looked like the Michelin Man for these 2 weeks. Initially, they tried fitting me up to 2 electronic massagers - one for each arm, but that didn't have much effect and we found that the manual drainage was better for me. I get this twice a week for the two weeks that I attend. So far, the girth of my arms has varied from one part of the arm to another, sometimes up and sometimes down. This has maintained my arms as they were from the start, which has been helpful. 

My clinic provides all of my compression sleeves and bras and has been very helpful in replacing these as necessary. I am sure that there must be similar clinics in your local area and hope that some of your care team can refer you to one of these.

I hope that you can find somewhere to help you out soon.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Thank you for your reply.

I have had bandaging 4 times. It helps to start off with and reduces the size but there has been such a gap between sleeves being replaced that my arm has gone bigger each time. I am with a specialist Lymphedema clinic but I am only allowed 1 bandaging a year, not even that and every made to measure sleeve just doesn't work.  They are either too loose or too tight which causes the lymphedema to go down to my hands and fingers. I tried and tried to make sure that the glove was tight around fingers and hands. I was a piano player before and now the arm is so big that I can't play more than a few minutes at a time. 

I also had manual drainage but only offered 3 times in the past 10 years. 

I was told by a lymphedema nurse that some people get it if the lymph nodes where not cut out properly. Not sure how true this is but feel so frustrated and angry with it all.

It sounds you have a wonderful clinic. It doesn't happen every where I'm afraid. 

Sisi

Hi Sisi,

I am so sorry to hear about the treatment that you've received at the clinic. It is nowhere regular or often enough. Do you have a Maggies or the Haven near you? I initially attended the Haven, where they ran classes on how to bandage yourself. This might be helpful for you, because at least then you could do this more often.

I have had terrible bother getting sleeves to fit properly too - most have been too tight and have caused weals at the top of my arm, elbow, wrist and thumb space. When they are too loose they just fall down and are useless. It took some time for me to find someone who fitted me correctly. It must be so frustrating not to be able to play your piano for any length of time. There are also some people working privately in this area. They could possibly give you more regular MLD, measure you correctly for your sleeve and, I'm sure that you could still order your sleeves through an NHS supplier.

Have you contacted your current clinic and told them that your arm iis still swelling? maybe this would be the best place to start?

Please keep in touch and let me know how you get on. We are all here fory ou.

Kind regards,

Jolamine xx

Thank you for writing again.

Yes I have, they aren't really seeing anyone. It seems Covid has put a stop to everything. I'm hoping to get my second jab so I can go searching for more options of maybe as you mentioned get some privet help. Money is of course an issue but I'm willing to do anything to stop this.

The worst part is the Sepsis attacks. They are so scaring. I got red and hot arm couple of days back. Was panicking. Took extra antibiotics and seems to have gone down again. I don't know why this happens as I didn't even have a bite or a cut or anything. 

I don't know if that has happened to you? out of hte blue getting a red , swellen hot arm?

Thanks

Sisi

Hi Sisi,

I have been lucky that I have never had sepsis, just a sore arm that wouldn't fit into a lot of my sleeves. You would have to get these attended to quickly, as these could be serious. Our Lymphoedema clinic has been working right through Covid, although seeing fewer people.

I am glad to hear that you have a Maggies fairly close by. I don't know whether or not they still do the Lymphoedema training, as mine was 10 years ago, but it is certainly worth looking into. They offer a range of other services which you might also find beneficial. I agree that money is always an issue when you have to go private, but thought that it might be worth trying more regular visits to see if this can help to reduce your swelling.

Please keep in touch and let us know how you get on.

Kind regards,

Jolamine xx

Hiya, 

Just been reading your posts....there doesn't seem to be much chat about this problem...I'm really lucky up here in the Northwest...My lymphoedema started 27th August when I was just starting radiotheraphy.  My BC nurse referred me to the local clinic saying that they wouldn't see me for sevarl weeks after radiotharapy ended and my appointment was first week of Jan this year.  I ordered sleeves off the internet without any knowledge of measuring and while they comforted my elbow they made my hand balloon.  I joined the Lymphoedema Society and watched many videos on massage.

I rang my clinic a few times and they had a cancellation last October...got measured and prescribed the Mobiderm Gauntlet and the Mediven day sleeves. The nurses are so brilliant, I've been three times now and yesterday collected my three new sleeves.  My hand is flat which pleases me!!

Despite being careful I have managed to cut my arm and fingers several times in that short space of time...the worst was by our new cat as he used his back paws in my forearm...blood poured through the sleeve...Each time I use Magnesium Sulphate under a plaster immediately, as I do on any bites or cuts anywhere.  So far this has been successful and I mentioned it to my nurse at my last appointment.  I understand the seriousness of this and it worries me.

Just thought I'd mention it incase it helps.

Best regards x