Topic: Kiwi ladies who need encouragment, but all welcome.

Jun 20, 2012 10:04PM Musical wrote:

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

Jun 20, 2012 10:31PM kt1966 wrote:

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.

Jun 20, 2012 10:40PM kt1966 wrote:

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... 

Jun 20, 2012 10:52PM Alyson wrote:

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.

Jun 20, 2012 11:24PM Hils wrote:

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

Jun 21, 2012 03:56AM Musical wrote:

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 :-).

Jun 21, 2012 07:36PM kt1966 wrote:

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 

Jun 22, 2012 07:12PM midnight1327 wrote:

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

Jun 24, 2012 04:54AM Hils wrote:

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

Jun 24, 2012 05:22PM Alyson wrote:

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

Jun 24, 2012 05:55PM kt1966 wrote:

Alyson- I missed your post somehow.

D**n cancer for sure- not fair what it does. Hope the trip goes well. 

Jun 24, 2012 06:19PM Alyson wrote:

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.

Jun 24, 2012 07:14PM Musical wrote:

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.

Jun 24, 2012 07:26PM Musical wrote:

Just looking at your signature midnight and theres nothing about your ER status, but if youre on Tamox you'll be ER+.

Jun 24, 2012 08:09PM Musical wrote:

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.