This was the best link I could find, although the way I have been taught it, seems much more gentle. I continue down to my hand, after ‘unblocking’ at the top! I have no idea whether this is doing any good at all- but since my flu jab was in my upper arm, something must be working up there, as that remains ok at the moment. Maybe it is a good preventative measure, whatever happens with the nurse? Hope you get it sorted soon,
Tracey
Lulu keep rolling in that heather!!
Tracey, thank you so much, it’s just so typical that it disappears when I’m due to see BCN, can’t believe it hopefully it will just be a “wee” blip will let you know how I get on xx
Maybe you all know this, but I started to follow manual drainage techniques once I’d been measured for my sleeve. Next visit to the Lymphoedema nurse, I told her what I’d been doing. I thought she’d be pleased, but she wasn’t and said that no one should be doing any manual moving around of lymph fluid unless you are absolutely sure there is no chance of any residual cancer there.
So, maybe you are all OK, and I’m the only one that didn’t think it through, but just wanted to let you know in case any of you are like me, without clear evidence that the cancer has all gone.
Annie
Hi Annie,
Thank you for your advice, I didn’t know that either, that is why this forum is invaluable. Just going to wait until I see BCN because it may be absolutely nothing to do with lymphoedema. Thanks again for your warning xx
Hi everyone,
Not posted before, but I have had ld in my hand for 5 years, and really struggled to get the treatment I needed.
I believe that it should be treated “agressively” that is ASAP, with compression and night time bandaging. When I eventually saw an expert she taught me to bandage and have been doing that now for years at night, as routine as brushing your teeth. Now, and I don’t know if it is a coincidence because I am now off Tamoxifen, but I can go for periods without the glove.
I was told that with treatment the Lymph can sometimes find new channels to flow through so helping with the swelling. There should be zero tolerance with swelling there is no such thing as its only a little we’ll leave it and see.
My local hospice refused to teach me to bandage as they had far worse cases!! - I was only 47 and without the treatment I got through persitence, would never have been able to work again.
I really hope that attitudes have changed. I am a nurse and I used to cry at the thought of all the people without the knowledge and know-how of how to push for proper care or know what there is out there for them.
Demand only the best!
Love to all
Hi Lottie,
Thank you so much for your advice, I’m not sure what I have? I have had no symptoms at all until today, which is really weird. I have the same tightness again between my thumb and forefinger and to me it does look slightly swollen. I cleaned my windows this morning and not long after that I started to be aware of my hand. Is this consistent with L? That it goes away for a while then comes back again? I had to cancel appointment with BCN about this because on the day I was meant to see her I had no symptoms at all.I feel so unsure about this. I have appointment with doc on Mon so will ask about it then.
Your determination was fantastic and am so pleased for you, thank you again Lottie xx
Katy, I have mild Lymph in my arm and hand and, yes, it comes and goes! My BCN referred me to the LN without seeing me (phone call was all) and the LN was fab. The first time I went, I thought I was OK, and felt a fraud. She was very reassuring and measured anyway, and I did have a bit of swelling. She showed me how to do SLD, and gave me a leaflet and a leaflet for exercise (The Haven have a brilliant DVD for exercise for lymph on their website thehaven.org.uk/how-we-can-help-you/lymphoedema ) which I find brilliant because it explains WHY you do things! When I went back the next time, it was worse from rads, and the LN gave me a sleeve (which I am to regard as my “friend” because it helps stop it getting worse) I wear that for my exercises and when I’m gardening or ironing or doing stuff around the house. I do my massage “religiously” every morning before I get out of bed. Between the two, I keep it under control mostly, but it is a daily routine, for life! Bah humbug! But hey! If it works…
No-one mentioned the need to know whether cancer cells were flying around - I started my massage during chemo - no way of knowing what was going on - on the instructions of healtcare professionals…
SOme days my hands are absolutely fine. Somedays, writing is a chore. I fell over the other week and wrenched my shoulder - that set it off again as bad as it’s ever been. Back to the sleeve for longer… exercises twice a day, and I’m getting there.
Ain’t life fun???!!! Jane
Hi Jane,
Thank you for your response and yes I do feel a bit of a fraud or hypochondriac you just feel so unsure about everything now.
I’m going to docs about joint pain on Mon but I think I will phone BCN instead cause I feel the doc has no empathy for L. When I sliced my finger a few months back, had to go in to check about tetanus, he really pooh poohed my worry of L and made me feel a bit stupid. I really think that has made me very wary of asking at docs. The swelling I have is minimal.
I am so sorry to hear that yours is worse at the moment, you jump over one hurdle and then get hit by another!
Not usually so sappy, so will have to gain a bit of control and just go for it after all it is my body so thank you for the positive vibes xx
life is a mountain range - you just think you’ve got to the top of the hill and that it’s going to be easier, and maybe it is for a bit as you go downhill, but then you see the next hill to climb…
cue music… !!
Jane
Thank you for the Haven Link…cant go to one cos i’m in France but the site and info on it is excellent…thanks again
Mary M
Hi katytc
I have mild L in my wrist caused, would you believe it, just by peeling and chopping a butternut squash. My wrist was hurting at the time but silly me carried on, just wanting to get the dinner going!!! I won’t be eating butternut squash again. Anyway BCN referred me straight to L clinic and nurse there was wonderful. I have to wear a sleeveless glove during the day and another one at night. I am doing the massage and exercises and it seems totally under control, in fact so much so I don’t think the glove is helping as it is too big now.
Incidentally, LN said not to stretch up with bad arm for long periods as it kinks drainage channels under the arm and prevents fluid finding alternative routes. She specifically said not to clean windows or cut hedges. She didn’t have to tell me twice, nice new jobs for OH. x
I haven’t been on here in ages, but have to say that I have had my LD in my wrist and hand for over a year now.
It was in my forearm too (mildly), but that has gone. It is so mild the LD nurse was dismissive of me, but hey we know and so should she, it is what can happen next that worries us.
I no longer wear my sleeve and glove as it makes the hand swell worse. I do believe in kinesio taping though. I think it works. The trouble with the hand is the channels are so fine it is hard to eradicate the lymph. I worry that mine is starting to thicken inside. Just for the record, I think I may have done something silly once to cause this,like too much effort with a blow dry and this is my punishment!
It doesnt hurt or feel tight and gets worse if I do scrubbing and gripping.
On here is the only place we can really talk about this as it seems so petty, when you show someone and go on about how worried you feel.xx
Thank you so much for your replies, you just don’t want to make a mountain out of a mole hill especially when you are going about something else to the docs, the way it’s going I will have a list!
I didn’t know about cleaning windows sunshine1, well as you say good excuse for not doing it hee hee. Glad your symptoms are under control.
possitivethinker you are so right this is the only place that you can just spill out all your worries etc, it’s a place where people totally understand where you are coming from so thank you all again xx