Kiwi ladies who need encouragment, but all welcome.
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Hi kt, WHOA 100$ yikes. If sleeves were that then what are they now and truncal garments would be much more possibly?
I do not think it should be necessary to have 'full blown swelling' and anyway, that would be subjective. In my way of thinking, all that should be needed is that you are suffering discomfort and/or any swelling at all. Remember LE can strike at ANY time and that risk stays with us till the day we die. It is also FAR better to deal with it quickly and to wait until its a fullblown problem is courting trouble.
Two suggestions. 1/ Id try ringing the Cancer support people up there and they may be able to tell you what to do, and 2/ what about your GP? Is he/she someone you feel you could speak to about this? For my left arm, (prophy) Im pretty sure it was my Doc who 'referred me on' to LE lady even though Ive never stopped going to her. So when it comes down to it, Im not sure who's say so it was that I got free support and sleeves for that arm as well.
The question we need to ask is, is it only people who have had BC after a certain date that gets this support? Lets hope not. Please keep us posted.
If youre gardening (yes I know its a pain) but I hope youve got protection on your hands and taking care not to get scratched with branches and stuff. I have a perscription cream in case I get any nicks and cuts coz they can turn really nasty. For me, I also pace myself so I dont overdo it. That also brasses me off because Im the type that like to bore in and get something done. Nothing fun about LE thats for sure.
Oh, just another suggestion kt that Ive found has REALLY helped me. I should be doing these all the time but I get slack on it. When I get more aching and swelling than normal, I do daily:
- 30 x 3 ... (hand pumps) open and shutting my hands, arms stretched out straight above head. I find my rubber 'cancer' ball is very helpful for this.
- 10 x 3 ... with elbows bent and arms to the side raise whole arm out sideways (LOL like a chicken wing) as high as you can.
- 10 x 3 ... same again but this time the motion is.... elbows bent arms to the front and lift as high as possible with your fists going straight backwards as far as possible behind your head. (hard to describe but easy to do)
- 10 x 3 ... arms straight down at sides and raise directly sideways (not too quickly) to above your head.
Hope these make sense. They only take a minute or 2.
Hope this all helps
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QUOTE:
I know that because I have only had a few nodes removed via a SNB that I am still at risk of lymphodema, but the risk is a lot lower. Should I worry about having blood taken from that arm etc? How would I know if I had a problem - would it just be swelling of the arm? I have tightness that runs along my tricep that just will not go, but it does not get any worse either. So am just stretching and massaging my arm and I just think that it is just me and nothing else.
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Hils, going by what the ladies on the Lymphoedema board say, and my own experiences, I would not let anyone touch that arm. Not with needles or Blood pressure taken. The only exception is a life and death situation. Be prepared for opposition and SOME of the medical fraternity DONT like it when you stand your ground on this, to which I say TOUGH. ITs my body.
Like you Ive had a similar thing that just doesnt go away, and thats a burning type soreness/sensitivity that runs in a strip under my arm to my elbow. I think thats always going to be there and I think its just the result of surgery. If you experience any swelling at all, it not 'just you', its something to watch out for. My LE lady said the swelling can be particularly stubborn around the elbow area. Likewise, any new pain/aching that you havent had before is a red flag to beware. Anyway the massage and exercising definitely helps, and Im of the view with LE Id far sooner take the 'ambulance at the top of the cliff' approach, rather than the ambulance at the bottom. In other words prevention is FAR better than cure.
HTHs
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Enjoy your peace & quiet Alyson. Hope you enjoy your night out with DH too. It is hard sometimes I'm sure having someone stay all the time even if it is your sister, you need space too & time just the 2 (DH & you) of you.
I'm in Wiatakere DHB- looked on that LE therapist thing & they said they have nothing for our area! Only ones you can pay for...But will check out GL if I can.
Hils, I would take care even tho you only had 3 lymph nodes out- better to be safe than sorry. I only had 10 out, but had rads (as well as chemo) too. I was quite blase and now I'm sorry! (I like your neighbours cats names- my kids were right into Pokemon)
Thanks for the exercises , Musical- I will add them to the ones I got from the LE therapist.
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Cheers Musical that is really helpful and I totally agree with your philosophy
Alyson aren't children just priceless with their view of the world and how they look at it. That story was excellent. Plus I will also check out the LE link, thanks for that
Kt hope you get access to a LE expert via the DHB, unfortunately Waitemata DHB does not offer alot of services. But sometimes the DHBs have a reciprocal arrangement and maybeyou can be referred to Auckland DHB and the Greenlane clinic
Spoke to soon the rain has arrived - oops
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Hils thanks, oops I meant to put Waitemata not Waitakere at all! Chemo/letrozole brain duh...
I swear my memory is so bad! We are nowhere near Waitakere btw, but they both start with Wai!
Raining here too, I'm glad I got outside before...
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Hubby and i took 2 female cats to get their ops checked out from other day, we got them speyed and one has four six week old bubbas, courtesy of the male black and white next door, very evident he is the dad and she is black, Inky is her name, took kittens in to get vacinated and health checked and pretty soon i will have them on trade me. we took another white six month too and she got her vacine too and her mummy is now speyed as well, she is the next one to get speyed in about two months. i thought it was a boy, but it is a girl, she is very playful, white like her mummy, and very deaf like her mummy and found that out because she like to sit on vacum cleaner whilst its going, lol. She is always on the go, funny as. i think she is abit Adhd disorder, like a typical hperactive kid. she thought the stefascope of the vet was a good toy to play with. i am standing very strong to which these four kittens will be going. hubby is trying to not let them go, but i can't cope with it. i get too tired quick and donot want the animals to suffer. somebody will love them just as much as we do, you gotta call it quits and i have to be very strong. plus they cost a bomb to keep their health up to standard. Hubby is just a softy and makes up lovely little beds for them so they nice and warm, he is so kind to the little things and they love him to bits. Yes we are abit nutty us lot, animals are our pleasure, just hope i don't bore everybody with them. on here.
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KT as there is no service available at Waitakere then you should be able to get it at Auckland I would check it out and you should certainly be getting the subsidy on your sleeves. My arm is not severe but I sure it would be worse if I didn't look after it with massage and my sleeves. Ring the cancer society in Auckland and they might be able to tell you or ring Greenlane and ask there ph3074949 ext. 28582. Then you can get referral from your GP if they will do it.
Musical sleeves and gauntlet run at about $140. I agree, prevention is better than cure cause there isn't a cure for LE. And like you no-one touches my arm. Once I told a rads doc that it was over my dead body that they tounch my arm, he was most surprised at my attitude and I told him if he didn't get a vein next time he could find someone who knew what they were doing!!! He got it but I ended up with a hameotoma (sp) right down my fore arm from a previous attempt.
It is things like this that make me so cross - I do hope you are getting the subsidy for prosthesis and bra? That makes me mad as well, How many people have the same two bras for four years. I know of people who have had real problems with LE because they cannot afford to get the correct bras. Oh dear thats me on my little hobby horse.
Hils you must look after your arm as LE can happen at any time. And if you travel you should wear a sleeve and gauntlet.
Must go as a cup of tea has been made.
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Yes Alyson. I do get the funding for prosthesis & bra... I started a thread a while ago about the lack of choice here & the expense(!)- I now order my forms from overseas & get the money refunded thru Healthpac- you need to ring them first & get a special number, forms etc- but prostheses end up being half the price they are here so you get more for your funding money!
Worth looking into, you just need to go to the places here to find out your size so you can order the right one! (and last time I went to Natural wear they said sleeves aren't subsidised- maybe thats when it thru them?)
Thanks for all the info. I will make that call- I finally found a tape measure & measured my arms myself- I don't seem to have swelling, but my arm is still a bit sore.
Midnight you sure have a lot of cats- 2 is too many for me right now!
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I am so dopey at times Alyson I read your post and I thought you were talking about musical sleaves, and my mind started to whir and I was thinking wow that is pretty cool. Then I reread your post and I realised that my overactive mind had misread your post. Did make me laugh though.
I am going to be flying over to Europe next year, so I guess that means based on your recommendation I should get a sleeve and gauntlet. As I do not think I have LE at the moment would I be able to get a sleeve from Greenlane in order to prevent LE or would I need to pay for this myself?
Hope that cuppa was a good one
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Ha, I like that, musical sleeves - they sound fun
I rang the number Alyson, they put me onto NSH physio dept. You need a GP referral, so that will be my next step...
They didn't seem particularly forthcoming over the phone, so I hope they do MLD & measurement & funding for new sleeves etc! I hate how slow everything is thru the public system- one advantage of finding a LE therapist privately is that you can choose your appt time.
I have to take my M-I-L down to NSH tomorrow (have done lots of times over the last year or so) & she has to be there at 8:45am which should be fun to juggle with getting my kids to school, feeding animals & the rush hour, yippee! Then there will be the pick up too- not sure when that will be, prob late afternoon or the next day?
Have a good afternoon ladies. I must stop looking in here- there are other things to get on with!
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Alyson please dont get off your hobby horse! As for haematomas (sp?) grrrrrrr. Sorry to hear about yours. I had a massive one on my breast when my BS was doing the initial needle biopsy. I cant tell you how upset I was at this as it put my surgery back weeks. :-X. When you get a row of 1%/minority things happening a number of times it REALLY makes you wonder.
One thing that particularly gets my blood up is any of the medical people minimizing things youre going through as if youre neurotic or something. I think this attitude is all too common and victims of this abuse dont like to mention it in case it makes them look like a moaner. Moreover, more often than not the med team know they are in a position of power. That said, there are some fabulous people and nurses with really great attitudes. I am so grateful for these people.
kt musical sleeves are fun - especially as they allow me to play things longer :-).
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Funny what a missed comma does!!! I would love a musical sleeve myself.
Not musical but how about these:
These are from US. No idea if you can get them here.
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They would make a change from brown thats for sure, Alyson.
Just got back from dropping my M-I-L off at hospital, we got there with 10 min to spare, and of course waited until 1/2 hour after her designated time for her to be seen! She was still waiting for the next step when I had to leave at 10.
Makes me not want to go thru hospital system for anything- off putting as far as chasing the LE thing, I can just imagine all the hours spent waiting in waiting rooms, not to mention waiting for the appt to arrive in the post to start with!
Boy, what a moaner! Sorry, just the thought of it makes me cringe. I know we are lucky to have free health care a lot of the time...
A lovely day today
Just dropped my daughters eftpos card to her so she can buy a ticket for the school ball (I'll pay her back!). Still have to shop for dress etc... Kaching!Hope you are all having a great day
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Kt I never have to wait for my LE appointment, quite different togeneral appointments thought I must say oncology is always pretty much on time but have waited with my sister when she was assessed for bowel cancer. Think Auckland have stopped block bookings so the system has improved.
Must make cheese cake for DD's birthday tonight. She has invited friends over to our place because hers is not big enough!!!!
Adding: I have pink, black, brown and brick coloured sleeves.
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Hope you enjoyed your cheesecake Alyson, yummy. i love cheese cake, what kind was it. Have a good trip to nelson, i know its not in the best reasons to visit, but hope you have a safe trip there and back. take care hugs xxx
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Hey Ladies, hope you all are having a great weekend.
Im interested to know from NZ ladies, those of you who are ER+, at the time of your diagnosis and pathology report, were you told what perecentage ER+ you were?
Alyson, nothing happens when I click on the 'enlarge' tab but from what I can see those sleeves look pretty amazing. Anyway with all this talk about musical sleeves, I was very tempted to let loose with some felt pens on mine LOL
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Hi Musical yes I was told my ER and PR status and % and two different tests were carried out on my tumour, but would need to look up the exact details.
Hope everyone has had a good weekend
Maybe I should try and get someone to design some musical and colourful (designer) sleeves as from the feedback there could be a bit of a call for them here in NZ
Full on week at work (but probably not as hard as sorting out sheep, chasing goats and cuddling alpachas - so will try and call in later on in the week
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Thanks Hils. The reason I ask about the ER (and yes PR too) is because there seems to me ( as I understand it) to be 2 opposing views about this and I want to find out which one is right.... if I can. The girls in the US, not sure about Oz, talk about their percentages quite a lot and I gather that the more ER+ you are the more beneficial the AI's, therefore it is in our interests to know what our % is. OK, so I went to my GP on Friday and asked him what mine was because I was never told. I did remember back then something about them saying it doesnt matter what the percentage is.... all it matters is that you are ER + /PR+. Well Id like to know WHY it doesnt matter. So the Doc rang a colleague to find out while I was there and he was told "they dont test for it in NZ because it makes no difference."
Id really appreciate if anyone can enlighten me on this further
Awwww Id love to cuddle an alpaca :-)))). I love to cuddle cows. They are soooo soft under their necks. I'll have to settle for my monarchs at the mo which I've raised inside coz its too cold out. I have around 40 that I need to release at the park soon. They overwinter in what is called clusters of varying sizes. When they are newly hatched they love to climb and stay and stay and staaaaay on your finger, and a girls too busy to have that happen all day long. I just put them on my face and they climb up onto my hair or whatever and can stay there for hours. Feels nice except their little claws can be quite sharp. Lol
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Musical that seems right about the %. The US girls get all sorts of tests that our oncs think are unnecessary just as they appear to have more radiation treatments than us. My rads onc explained that they get the same ammount as us in total but because the clinic get so much $ per treatment it is spread out. My other onc who is one of the top in the world evidently laughs when I ask such questions and say that if we really need something we will get it but many of the test make no difference. Such as the tumour marker one for instance some people like me have never had raised tumour markers or have high calcium levels when I have an RA flare. With the AI's he told me that it was to do with the ER/PR stas but they concidered other things as well.
Hope that makes sense.
I am about to get packed to go to Nelson for my friend's funeral, third funeral this year. This one has hit me cause it was cancer and he is much the same age us and I have another friend who is stage 4 who has now lasted longer than the doctors thought. I hate this disease.
On a happier not have been to three wedding as well.
Must fly
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Hey girls. Cold & wet here- darn it. I like those clear blue winter days, not these grey wet ones....
Hope your daughters party went well Alyson. I love cheesecake too.
I had a look at my notes (I requested them when I moved towns) and my ER is 90% & PR is 50%, so they do do it here. If you want you can request copies of your notes- it can be quite enlightening. It is your right to see them, they are yours after all
Monarchs are cool We had some swan plants outside with caterpillars but I think the wasps got them because the all shrivelled up & died
next time we'll bring them inside...Hope you all enjoy your day
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Alyson- I missed your post somehow.
D**n cancer for sure- not fair what it does. Hope the trip goes well.
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i was her+ as well, and i did not get told alot . i guess i did not know what to ask really or the kind of questions i needed to ask, i found them quite secretive, hubby felt like they were keepeing alot back at times and we found more from GP about things, so the answer is no, they did not tell me the percentages.
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Midnight didn't you get a copy of your pathology - I did and it had all that on it. You can certainly ask for it as it is your right - would have to go and look mine up but the % are very high for both. The docs will still show the blood test results and anything I ask. Often when we think the docs are being secretive it is because they don't know or are just not sure.You have probably said but are you on hercepton?
Must go, trying to get things into my bag, it might be cold in Nelson.
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no, i did not realise that i could, as i said, i was abit naieve about what to ask really, no i am not hercepton, i did not realise it was available in NZ. well i always thought it was sore point as it was not funded am just on tamoxifen, i know that there was abit of a court battle due to this and women had to raise funds to get it or am i climbing thr wrong tree here. i know it's a available in Auz, but did not think it was here. Gosh maybe there are thiongs i could of known and not thought or known to ask.
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Thanks ladies for your input on this. From my experience, after what I was told, the general concensus was that US cancer patients are over diagnosed, (at the end of the day you'd have to say "whatever that means") and over monitored, resulting in too many tests, some of which give you plenty of radiation et al.. I can see where theyre coming from to a degree. However we ALL know here that cancer is such a lousy disease that OF COURSE we want to manage our situation. I guess theres a balance, but it would be at least nice to have some consistency eh?
Alyson. Sorry to hear about your friend. Thats horrible. I lost my older siss 6.5 yrs ago with this scumbag disease and I miss her everyday. Hers was really agressive. Her2 positive +++ right out on the end of the scale, but Im going to find out what her other ER and PR status' were. Anyway hope you have a safe and good trip to Nelson and back.
kt thanks for your response. My Doc 'pulled up' some notes on pooter but they were gobbledegook to him but between us trying to make sense of it we ascertained that I was about 40% ish, posititive but we're not sure. It was out of 300 so I will get a copy of this and see what I can work out as I cant remember all the details.
Yes monarchs are neat critters. They do get attacked by wasps at a time they are typically looking for protein. Theres all sorts too that will attack them like paper wasps and some types are so tiny they look like sandflies. I found there were many more predators (in every stage) than I first thought.... (which was that NOTHING would touch them) Anyway one year I noticed just about all my chrysalides went missing and I'd heard that rats and mice and even hedgehogs will eat them. When the chrysalides are new and soft they are prime candidates for predation. Even the eggs get ripped off by spiders wasps shield beetles etc. Unfortunately the caterpillars actually can eat each other but Im pleased to have never witnessed that and Ive observed them closely for years. I LOVE the caterpillars and Im not happy unless I see at least one escape across the carpet. LOL. Oh and the places they hang can really make you laugh! These days I try and limit what Mrs Monarch lays on my swanplants by using a net. I absolutely cant stand starving caterpillars and I always bring in the big ones just before theyre ready to escape somewhere to hang in a J, even throughout summer. When the butterlies hatch I take them into town to release them where theres lots more flowers to feed from. I also really like the Red and Yellow Admirals.
Midnight. Thanks. That is so often the case. I think we can never really be prepared for such a bombshell as cancer. I helped my aged mum nurse my sister until her death and I cant tell you how horrendous this all was. Even going through all that, I still wasnt prepared and still didnt know what the right questions were. It is all so overwhelming. One thing I found absolutely indespensible and still use to this day, is a voice recorder. All my appointments except one or two were recorded. I liked to make sure I asked permission first and told my med team that it was so helpful because you just couldnt process all the info at once. Just about all were understanding and a few even thought it was a great idea.
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2 posts came in while I was posting mine.
Midnite! theres something grossly wrong here. Either Im waaaay out of touch or you are slipping through the cracks BIG time. Unless something huge has happened and escaped my notice, Herception is fully funded. It was partially funded up for my Sister who had it 6,5 yrs ago. She had to have AC chemo 1st and it was only when she got secondaries that she got it. Of course it was too late. But it is my understanding that fairly recently it has become fully funded.
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Just looking at your signature midnight and theres nothing about your ER status, but if youre on Tamox you'll be ER+.
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Midnight, herceptin has been fully funded since the Nats got in in2008, it was an election promise which has been kept. Not sure but if you are her2+ I think you are eligible for a year's treatment. I would be asking lots of questions if I were you.
Musical I love monarchs, didn't have many this year, not enough swan plant but have lots of plants growing at present. A cousin, who sadly has just died, had hundreds and was known as the butterfly lady so we always had a place to take caterpillars if food was short. Her neighbour had lots as well.
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Alyson you guys up in Auckland have quite a different scenario to us further south. We get frosts and swanplants will tolerate a few mid to light ones but if they have one too many, they will suddenly turn their toes up and THAT IS THAT no rescuing them. If we want to keep them we have to cover them. I think for us its better to treat them as annuals. On the other hand, we get to have a winter rest LOL, whereas you folk up north not so much. I think a good stiff frost or two is great as it kills a lot of bugs like those pesky faming aphids (grrrrrrr) . Pitty it didnt kill cancer too eh?
People are told that pumpkin will 'tide the caterpillars over' if you run out of food. Not so. It may 'finish off' the big ones (5th instars) but other than that, a lot dont make it. They either just die as caterpillars or wont pupate properly or will be deformed when they hatchout. The best way Ive found (if you dont like starving caterpillars) is to cover plants and monitor Mrs.M. It can be very time consuming but very rewarding. I always tell people if they want to do monarchs, is to figure out what theyre able to cope with so they dont get overwhelmed.
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Yes i am on Tamox for 5yrs, they said i was Her+ and i remember the B cancer nurse saying that my cells were really angry and busy when they they did tests after lumpectomy. but had not got to Lymph nodes, that was negitive. but the cancer was a 1.4 centimeter, but particuarly nasty even though it was small, .
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