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
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
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
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
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..... !!
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
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 http://www.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
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
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
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
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.
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
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,
Yes it does vary... It's actually swollen and tight at the mo but wondering if its maybe not helped by the taxotere which can cause probs with the hands and fingers..... And yeah I do feel like I'm in need of a good roll around in some of that Heather LOL
Oh my Lulu, what a disaster all these incidents, you have "been slapped with the lucky white heather" that's our family joke when things go wrong!!
I have not had the swelling since posting, does yours just come & go?
Hope things have been better for you xx
Hi Katy I saw the lymphodeama physio..... For the hand swelling and also coding in my arm... Both unrelated apparently.... She did massage and taping but never had any compression glove.... She said it was mild but that it was difficult to measure hands anyway as the compression thingies are usually based on the arm measurements and mine was only in my hand and my arms were fine.... My hand had never been measured pre LO so no idea what the difference was.
I have had a number of incidents with my right hand and arm after surgery which may have contributed to the LO I got lymphangitis in my arm a few weeks after surgery, I got tracking cellulitis about 9 months after surgery after stabbing my finger on a staple sticking out a magazine, and 6 months later I fell over and broke a bone in my right hand and a year after that I fell ice skating and sprained both elbows and wrists on both sides. Can't remember when the LO became most noticeable though but remember working in port Glasgow which was 90+ minute drive each way my hand use to swell and ache... it was only one day a week so never got the chance to be that bad as it recovered in-between.
Probably doesn't help much but glad to hear your getting it checked xxx
Thank you Andie, will have a look, today I have no symptoms!! What is that all about? Is that normal if it was lymphoedema? I didn't phone BCN but will see her on Tues, I'm totally at a loss as to what's going on xx
There is an american website that has loads of info about LD including simple massage techniques. Definately worth a look. Not sure if i am allowed to post the actual link but it is the standard 3xW stepup-speakout .org
HJV, when I saw the LN she stressed that everyone was different, and what worked for one person, would not necessarily work for another. I would be tempted to not wear the compression garments, and give them a ring and ask for further advice. Have you been offered the taping? My BC nurse said that has had some fantastic results. My understanding of the glove and sleeve is that it gently encourages the lymph to flow. If you are wearing that, and the lymph is then not 'unblocked' further up your arm, it stands to reason that it will increase the swelling.
Katy- I will try to find the info sheet I got on the massage. I looked on the LSI website and could not see anything on there. I went to a Younger Womens BCC forum, and one of the sessions was run by a LN, who was excellent, and gave us a handout with the techniques on. I'll have a search and look for it!
I'm totally confused about lymphoedema. I've been diagnosed with lymphoedema in my hand & arm. I was given a glove & sleeve but the swelling in my hand got worse when i wore them. The lymphoedema nurse told me to just wear the glove (after previously telling me that i couldn't wear one without the other) So i did as i was told & just wore the glove but everytime i wear it the swelling in my hand gets worse immediately but when i don't wear it , the swelling goes down & i just have a bit of puffiness in my hand. I have another appt in 2 weeks with the lymphoedema nurse to see what she says but have no idea what advice she'll give this time.
I have attached a link to our publication "Reducing the risk of lymphodoema" which I thought may be helpful for you.
Very best wishes
I just remembered that I cut my finger around 2 months ago, it bled heavily but was superficial, went to docs in case I needed a tetanus jab, doc was not concerned with my history, so actually had forgotten about it until I read about your flu jab. I will take your advice because even if it has nothing to do with L, it's certainly not going to do me any harm, where do I find out about the massage? Thank you so much for helping xx
Yes, I have Lymphoedema in my hand. It was as a result of being given the flu jab on my surgery side. I had some pain in my hand initially, but now just some swelling around my wrist, thumb and hand. I have done a bit of research on this, and also saw the lymphoedema nurse yesterday. There was a long wait, but there are things you can do in the meantime. Make sure your whole arm is moisturised daily. There is also a gentle massage technique that you can use to encourage the lymph to drain. It is also an idea to carry antiseptic wipes around, so that you can quickly clean any scratches that may happen
The nurse has also given me a glove to wear, if I feel any increase in swelling, or am doing an activity that is likely to exacerbate it.
It is worth asking to be refered, however mild your symptoms. It may not be lymphoedema, but if it is, it may also be very manageable, so try not to panic. Good luck,
Manny, is the nerve compression due to lymphoedema?
Lulu, Have you had this checked out?
I was thinking that it was normal aches from ops etc because my arm and underarm still feel a little tight, that's why thinking about nerve problems. When I look at my arm etc I don't see any obvious swelling, just this little bit on my hand, Lulu I feel as though it's a tingly burning sensation, not all the time but I am becoming more aware of it a lot more now cause it's ouchy at times xx
Katy that's exactly the same place my hand swells up and also a bit of swelling on the palm of my hand.... It gets worse if I'm using it a lot... Like driving long distances or using the keyboard on my lappie.... It's much better now I have my iPad..... I don't get tingling or pain just a dull ache.
I have lymphoedema that affects my arm but doesn't affect my hand, yet I still get lots of pains and tingles in my hand due to nerve compression at the elbow and wrist.
Best thing is to see someone who can measure your arms and see if there is a difference or not really.
Thank you Annie, I really try to be very careful with my arm thats why I'm thinking some sort of nerve issue. Very glad that you are doing well with treatment, hopefully you do not have L either, many thanks again for your advice xx
My 'lymphoedema' started in my hand, but was more of a pain across the back of the hand - almost like someone had put their elbow into the back of it - accompanied by heaviness in my arm and obvious swelling. I noticed it after I had been using the computer (the mouse particularly).
However, after 4 months of treatment, the jury is still out as to whether I do have the condition.
I'm sure someone else is more reliable than me on this. Glad you're seeing your BCN soon, and if it is LDMA, it will be early stages and easily treatable
Good luck and try not to worry
Thank you for your very quick response, I've had this feeling for a month or so. Only this part of my hand, it also feels kinda tight, are these symptoms similar to the way lymphoedema feels?
I will see my Bcn next Tues so can ask then am really grateful for your advice,xx
Yes, you can get Lymphoedema in your hand (there are gloves designed for this). But, don't jump to conclusions. Go and see your Breast Care Nurse as a first port of call, and she will give you some advice.
Doctors don't usually know, and (in my area), you can't refer yourself to an NHS Lymphoedema specialist - and the waiting lists tend to be very long. You can pay/go private - and a consultation will cost about £80.00, but that may be worth it if you are really concerned.
It could also be a trapped nerve - so get advice from someone who knows. OR, it could just be tired through use (esp. if it is your right hand on your bad side).
In the short-term, try resting with it raised on a cushion and do your shoulder/arm exercises.
I'm hoping someone can give me some advice to stop me worrying over nothing. I noticed between my thumb and forefinger I was experiencing a tingly feeling and a little bit of tenderness. I also think it looks slightly swollen in that area, just slightly, do you get lymphoedema in your hand in that area or is it nerve end problems??? Any advice would be grateful, many thanks xx