thought I had a slipped disc but then....

flash

Sue many hugs.  It's never easy.

CoolBreeze

 I'm sorry Sue

Detour:

 I have huge issues with healthcare reform, and I've certainly needed healthcare.  I was told I had cancer on the same day as my tests - I got my tests a week from when I told them I had a lump, I saw a surgeon a couple days later - got every single test ordered the day I asked for it within a week, including two MRIs.  I can call my doctor and have the results faxed to me instantly.   I have an HMO too and my copays are $15.00.  I can also switch doctors with a mouseclick.   

The US has tons of different insurance plans and not all are equal.  And, if equal means everybody gets delayed care and fewer services, Im not for that, because still in the US, everybody gets care - even the indigent.  They may have to go to the ER and clinics, but they are not turned away - even for cancer. 

Herceptin has been available for almost ten years, almost six for lower stage woman.  There are no problems getting drugs and we too, have a legal right to reconstruction to the point that WE are satisfied, not a doctor.  I wouldn't want a government agency deciding what healthcare I should be getting like those in the UK have to do but that is where this country wants to head - and all you have to do is read how long the Canadian/UK women have to wait for tests, to see doctors, to get medicines to know that we have it better.

/detour

 However, in Sue's thread is not the place to talk politics - and if she had not said anything I wouldn't have either.  I wouldn't want to disrespect her.

To the most important subject:

I'm sorry that you got this news Sue.  You are doing a good job of coping - and who knows, maybe they'll see something different on your next test.  Suspicious doesn't mean confirmed.  But, if it is, you'll be okay, I can tell by your great and strong attitude.  l have my bone scan on Friday and should find out if my back pain is mets or not on Monday. I'm mostly thinking it's not, but you know - there is that small percentage in me that thinks it could be.   I hope if I get the bad news I do it wth the grace you have shared.  

squidwitch42

coolbreeze,

that's not what I meant, or course people need health care. But perhaps we should discuss in a different thread?

sueUK

Hi all! Thank you for your hugs flash...mmm....I think 'easy' is a word we could delete from our vocabulary at times dont you!

Squid..ah...you love all the best of our tele...mostly those you mention are from the 1970's & 80's - its kind of gone downhill since then lol! The thing with Penelope Keith was The Good Life - I have the boxed set on DVD (unopened!) - I really ought to dig them out. Her neighbour Barbara - real name Felicity Kendal is currently competing in our Strictly Come Dancing...your Dancing with the Stars...the years (and the botox most likely) have been kind to her! I used to love The Golden Girls, and going back some...Rhoda - now that is going back! Friends of course and currently CSI, Criminal Minds and all those.

Anyway, back to reality for a bit....yesterday kind of caught up with me some, so I took to my bed today. I did get up and dressed, and I was due to be going out for a coffee with my boss, but I felt sicky and just plain tired out so I made a few calls then went back to my nest for a snuggle with my kitties and stayed there until evening. At some point my doc called to see how I was and to tell me that she had been onto the hospital to see what the procedure is regarding appointments. I thought that was very kind. She offered more pain relief but I just wanted to say...I dont want pain relief, I want to get started on zapping this thing!!! The wait - isnt that just the pits!

I dont plan on making a habit of taking to my bed, but it was right for me today - I needed sleep and lots of it, I think I feel better for it and it being past midnight now, I will be getting myself some more soon lol!

Well its nice to come along to collect some hugs, and I have plenty to give out too! Have a good day ladies!

Big hugs, Sue x    

squidwitch42

Sue,

So nice to hear from you ah yes, that cutie patootie Felicity Kendall...all I have to do is go to my mail online, and I'll catch up on your stictly come dancing. Did I apologize to you all about Madonna and Gwynnie? well, sorry. Better your country than mine Anyhoo, just a little cross the pond humor, after all, you gave us Posh and Becks. She's super for girl's self esteem don't cha think?

I'm glad you took the day to rest. Kitties and all pets (except iguanas and fish, and turtles and... ) all furry pets are wonderful to cuddle. Domesticated. So is this your regular MD that called? I think that is really lovely, so glad you have that kind of support. I'll send this along in the hopes it gets there before you go back to sleep.  I may harass you a bit with your Brit TV, but I just loved watching it with my mom and dad. Good Good Memories.

Big Big American Hugs,

Traci

chicago-37

Sue,

  Are they going to biopsy your hip?  Also, did you do the full work-up when you were initially staged (ct/bone scan)?  I'm just curious because I was staged at stage 1 ct and bone scan were clean, and now I'm worried about my neck/back and waiting on my latest bone scan results...just 1.5 years out of initial surgery/treatment.

sueUK

Hi all, CT scan done...now the waiting game for the action plan. Scan only took 2 minutes but tooks ages to find a vein...who all went into hiding...into which to pump the die! Still, on the plus side - the nurse had to give up trying and therefore had to call the dishiest doc you ever did see to come along and help...swoon!

Chicago - I have to tell you that considerably less testing goes on here in the UK. With my original bc diagnosis, I had the testing done on the one day - mammo, ultrasound & biopsies. That was followed my mastectomy & lymph node dissection. These came back with clear margins and clear nodes...so I was given tamoxifen and that was that. Until this point I had had NO scans of any kind, and that was only to check on a slipped disc (which doesnt exist it now turns out!)....makes you think eh! As you did have these checks when you were diagnosed, I would take comfort from that - one, that hopefully all will be clear again, but if not, then whatever appears will be relatively new. I have no way of knowing at this point if scans would have shown this lot up two years ago...gggrrrrr!  I sincerely wish you happy results, and I hope you dont have long to wait either!

I dont know yet if they will do a biopsy on my hip - today the CT scan covered my pelvis, liver and chest, and I pray that as we seem pretty sure already that the pelvis is involved, that that is ALL that is involved. I could probably access the results in a few days from my GP, but I dont want to hear any more news until my proper onco appointment when hopefully they will have an action plan in place. There seems no point learning that its here here and here, just to worry myself to a wreck without knowing what they are going to do about it - I simply couldnt cope with that.

Im glad to say that the utter panic and totally horrid feelings that I had a few days ago...that I feel only you girls will understand...has gone off some. I think I have worked out a decent balance of valium/pain med regime which isnt making me sick or sending me to my bed...lets hope it lasts as I find that 'out of control' panic right down to the tips of your fingers feeling just too much to bear.

When do you expect your results Chicago? Isnt the waiting just awful - especially when you know that in reality, the results are there to be seen within minutes or at most hours from being done.

Anyway, as I say, for me it is the wait for THE appointment and Ive no idea how soon (or not soon) that will be! Whatever, I will keep taking the tablets and try to remain in the mode that says - you cant do begger all about it now, so get on with your life until that letter shows up! Sounds easy eh....mmmmmm?!?

Good wishes to you Chicago, and all who are waiting, worrying and generally dealing with being a member of the club!

Big hugs, Sue xxx 

chicago-37

Sue,

  Bad results on my end I have a moderate lesion on my c6/c7 vertabrae and have to have an MRI this Saturday.  They told me the results won't be ready until Monday, so my weekend is shot and I'm crying here typing this.   I just know the MRI will come out bad and don't know what to do. 

Leah_S

Waiting is definitely the worst thing. I hope you get your answers SOON.

I had a CT and bone scan at the time of my original dx and was told "no mets". I was preparing for a prophy mast plus DIEP recon and as part of pre-op was sent for CT-PET which found mets on my sacrum. On took another look at thee first CT and saw that there was a very faint discoloration in the area of my sacrum that now is eroded from the mets. He had a few radiologists read it and, even though the conclusion was that it is "not consistent" with the way mets starts I still wonder.

For me, also, the hardest part was telling my family. In some ways it's harder on them than on me.

Sending love to you.

Leah

sueUK

Chicago, I spotted your news on your thread and have left you a message over there.

Leah, now you are just the gal Ive been waiting for! My 'highly suggestive' thing is in my sacrum..in the bone marrow - is that the same as yours? Any info regarding your treatment would be so welcome as I have no idea what to expect, ie am I looking at radiation or chemo or both? I hope you are making good progress and are well on the road to recovery!

I had lat flap reconstruction last year (a year out from my mastectomy) and no checks were done at that time!

I havent told my sons yet, I agree Leah, I think our loved ones can often suffer as much if not more than us...we are busy getting treatment and then healing and all they can do is sit back and fall to bits. My sister is in bits..I can see that its all she can do to not cry when she is here. I think regarding my boys, I will wait until the action plan is in place.....did I already say that....brain fell out of gear there! I feel I want to say to them - right this is whats happened but its going to be okay because we are going to do this and this, rather than...theyve told me this and now I dont know what the heck is going to happen!

Huge hugs for you Chicago, I will be thinking of you and sharing your yukky weekend as we wait...and wait, with you!

Sue x 

Leah_S

Sue, I'm not sure if the tumor is in the bone marrow or not - never asked. I just know that it has eroded part of my sacrum. My treatment is Femara (aromitase inhibitor - antihormonal) and Aredia (bisphosphonate - bone strenghthening drug). My onc said that if I have a good response to these then he might recommend radiation since, as he said, it would have a good chance of "knocking it out completely". I am right now getting EXTREMELY  nervous since I'm seeing him on the 17th & he said he'll probably order a CT at that time to check how I'm responding to treatment (I started this treatment in June).

I also waited to tell my family until I had a treatment plan in place. I think it's easier to tell them (and talk about it in general) when that happens.

All the best.

Leah

LRM216

Sue -

Just wanted to let you know that prayers and all good positive vibes are being sent to you from Atlanta, GA.  I wish you all the best, and feel so badly that you have had to go through this interminable waiting period.  I only pray that should my time come to go through all that you have, I can do it with half the grace and composure you have shown.  You are truly an inspiration to all of us.

Linda

squidwitch42

Sending you hugs here (Chicago) and across the pond. Sue, I do agree with the waiting for your MD to go over the results. If I had gotten a hold of my PET scan first, I would have been bereft. I am sorry for all of you having to face this, but I have read enough to know there are Sisters to support you, and give you hope. I am standing by with you.

Traci

sueUK

Hi girls, checking in to collect some positive vibes and hand out some sparkly ones myself

You sum it up so well Traci - HOPE, that is all we need, and its the waiting around for them darned MD's to give you some which is the pain...quite literally in my case...in the bum!

I dont feel like an inspiration Linda...I feel like Im the one reaching out for the inspiration of you all, clinging onto every positive word I read, and to be quite honest, avoiding anything else.

Today I have been amusing myself reading a funny book - makes a nice change from the murder & mahem I usually read. Ive been tending my farm on facebook...I swore I wouldnt get sucked into that but hey, its a distraction. I will know that I really do have a handle on things when I can go back into my craft room and make pretty things again.

Leah, I hope the 17th will bring the most positive news possible. Im not too familiar with the meds that you mention - are they  tablets? I was expecting some serious zapping but I will not be alarmed now if what they offer me are pills to swallow instead. Do you know what, that is bs...I will be alarmed - I really do want some serious zapping! 

Chicago, thinking of you and wishing the hours to whizz by until your MRI tomorrow, and of course come Monday, some good news for you. 

Ah well, back to some humour...

Take care ladies, with hugs and sparkles heading your way!

Sue x

LRM216

Thinking of you, Sue - just wanted you to know.

Hugs,

Linda

Leah_S

Sue, the Femara is a pill taken daily, the Aredia is a once-a-month infusion. I know what you mean about "serious zapping". I sometimes look at the pill I'm taking. It's a TINY pill and all I can think is, "this little thing is going to take care of CANCER?" So the intellectual part of me that knows the science knows that it's what's needed, but the emotional part of me is, to say the least, nervous.

Leah

sueUK

Hi ladies, checking in to collect some hugs and hand some out

Thank you for that info Leah, Im sure its going to be so useful to be armed with this kind of information when the time comes.

'WHEN' being the sore point - still no appointment at the hossie...aaaggghhh! I have a routine appointment with my GP on Thursday, basically to collect another sick note for work. Im pretty certain she would be able to access my results from the CT but Im adamant that I dont want to know them until they are in a position to back it up with a treatment plan. But something in me wants her to just blurt out...oh I looked at your results and your liver and chest are fine! We know there is something dodgy in the sacrum - and by golly can I feel it. Having had a week free of the walking stick around the house, I am very much in need of it now. The level of pain is so intense and this is what is worrying me so much - my mind says that it cant be something small and insignificant to cause such pain. Im alternating between taking cocodamol or tramadol, with the diclofenac thrown in for good measure, plus the tamoxifen of course...talk about rattle as I hobble lol! But none of these touch the pain much, not at the moment anyway. Last week they seemed to help but its like something has flared up....does cancer flare up and ease off again? Oh, and not forgetting the diazapam to keep the panic at bay..at least that works!

Oh I do hope an appointment turns up tomorrow...or a phone call perhaps!

I have to put my happy face on tomorrow as its my Dads 80th birthday...yay!

Thank you for listening to my rant, I so needed it!

Big hugs and lots of sparkles, Sue xxx 

squidwitch42

I am sending you BIG HUGS and sparkles right back (LOL) and then up you some fairy lights!  I am going to write more, but hoping you were  nearby to get your hug...

squidwitch42

o.k., I did a little research and it seems that your co codamol is our Tylenol with Codeine. We also call them T 3's and frankly, this is not for people who have a fair amount of pain. I'm not sure of the dose of codeine that is matched up with the acetominiphen, but there may be a better med for you. It doesn't sound like the tramadol is doing much good either, and the other med is an anti-inflammatory. Can you call you MD and ask for anything else, or something long acting for better pain coverage, with something short acting for breakthrough? You absolutely deserve excellent pain control, and if you need to go to the Emergency Room, then can at least help you get out of severe pain.

Do you all have pain management within your system? Ours are run by anesthesiologists, and they usually work right along with Oncologists for better management of certain types of pain. Alright, enough now Traci, but being in pain is not acceptable in my book. I really hope this gets better for you ASAP. The waiting, for crying in the night! I wish they would call you too

I wish I could help you too...but I hope it helps to know we care very much. We'll give you hugs and love whenever you ask, and even if you don't How can we best support you right now? There is also the Stage IV threads, and you may find some comfort and good information there too. Especially with giving you personal experiences with pain that seems to flare and ease up, as well as give you lots of hope!

BIG BIG HUGS!

sueUK

Hi all!

Thank you Squidy for all your research, I am actually very moved that you are putting yourself out for me! The problem I have with pain relief right now is that we are in a state of limbo until I know the results of the CT and have a treatment plan to deal with mr nasty. I do have the appointment with my doc on Thursday...she is my regular doc and has been very sympathetic with me and has mentioned pain relief but not specifics. I kind of brushed her off I suppose as its TREATMENT I want to be getting on with and this waiting is just not on! However, I think I will discuss it with her on Thursday and see what she has to offer. Another day has gone by and no appointment, it really is agonising and I know that ALL of you know what it feels like. I will be asking my doc to chase up an appointment for me while I am there...well, I can try eh!

I believe that once we do get to the full knowledge stage and the treatment stage, then they will pull out all the stops regarding pain relief - what a joy that will be! As I say, its this limbo stage that is so difficult.

Today I woke up once again with the leg breaking feeling, but it does feel a little easier as the day has gone on. It is my Dads 80th birthday today and we are going out for a meal with some of the family later - I wonder if it would be inappropriate to drag my comfy pillow along with me to sit on lol! First I have to summon up the energy to 'put my face on' and ideally shave my fluffy legs as I plan to wear a skirt...I cant remember the last time I wore a skirt!!!

Sending out huge hugs and sparkles to you all!

Sue x

chicago-37

Sue,

 Hang in there, with all I have been through I have done tons of research on bone issues.  There are treatment plans that will reduce the pain and hopefully push out anything in there.  Sending you positive energy. 

sueUK

Thank you so much Chicago, thats just the kind of thing I want to hear lol! I am absorbing your positive energy, and hope you are enjoying the relief of such happy results!

Had a wonderful evening out with the family. Only wish i could have pinched the bench I was sitting on as I was pain-free all evening...yes, pain-free yay! Felt like my leg was broken when I stood up....so I just didnt stand up lol! We had cupcakes with 80 candles on for my Dad..I cant believe we didnt set the smoke alarms off! It made a very nice change to get out of the house...and for my Dad too as he doesnt get out much at all. Im going to hang on to this positive feeling as long as possible!

Hugs and sparkles all round, Sue xxx 

squidwitch42

Hugs and sparkles..you crack me up!  I'm glad that the celebration part was pain free. Reality hit when you had to leave the bench? Dang it! (censored)

Is there a chance for your regular doc to light a fire under someone's tuchus? I do hear you and you are ready for a plan of attack, and attack this you will, I am sure. As Chicago said, and I have also read, there is hope for the pain you are in and knocking back this McNasty. This must be very hard, so I'm hoping you are able to distract yourself. My was of dealing with stress is to hide in television and fantasy land. My tactic for most things actually.

Hang in there my friend.

Traci

sueUK

Hi Traci, I hope you are doing okay right now!

The story of 'the sparkles' lol....when I had my first bc diagnosis a couple of years ago, I was at that time (and still am) part of a craft forum where much chatting went on...perhaps more about buying crafty stash than using it, but we did inspire each other with our arty work too at times. Well, when I made my 'announcement' we started off with positive vibes, but then being crafters of course they had to be glittery sparkly positive vibes! They did their magic for me at that time with my outcome being much better than initially predicted by the docs, so from then on we have been sending sparkles to each other for all manner of ailments and crappy situations, and very often they come through and do the trick. So I thought it appropriate to spread some of those sparkles around over here lol! Lets hope they work their magic all the way across the pond and around the world he he!

Oh, how I would love to lose myself in some funny tele but its all battle of britain with my Dad and I dont have a tv fixed up with an ariel upstairs! Ordinarily I would take myself off to my craft room which I suspect holds more pretty paper and embellies than our Hobbycraft, your Michaels, but Im not on the mood right now. It will return Im sure.

I must tell you where my sparkles are heading tonight - to those poor miners in Chile who have been trapped for SO long and will be rescued very soon! I have sky news on, but I think there have been some delays so I might not get to see a miner appear before I have to head for my nest, but I will be checking on their progress first thing in the morning. What a wonderful story this is and just goes to prove that miracles do happen! Mind you, I have to say that the very idea of being in that rescue pod sends me all wobbly - how claustrophobic must that feel! Anyway, good luck to the guys and hope to see you all above ground very soon!

Have a great day Traci, and all who pop by. Its just gone 1 am here and I feel my nest is calling.

Hugs and........sparkles! Sue xxx 

squidwitch42

Sue,

Hilarious! Glittery sparkly positive vibes with a cherry on top! So you are craft-o-licious?  I love crafty stores, but there isn't a Michaels near me...so I make do with Target, as you never know when something may need a little extra "Tina Sparkle! "(o.k., that was totally a movie reference...and I am going to make you come up with the name!) I actually do know it, and it such a classic. So I was walking by an "Estate sale" on Monday, and I couldn't take my eyes off this cute little wrought iron number. I gave it pause, then came back and IT WAS GONE!!!!  and then this little voice comes out of this mini cooper and says...do you still want the Chanauka Tree? I'm like oh yes, my new X MAS tree (we were laughing.) $15.00 and it looks like a little tree which I am going to dress up in lights (your fairy lights) and pretty little shiney colored balls and other sparkly twinkly madness. Ahhhhh, crafting at it's finest.

So I too will be will be praying for a safe rescue, and for the miracle to be complete. Will you do a little double prayer for me too, I am at work tomorrow, and have been holding my breath a bit over this.

Talk to you soon,

Hugs and Twinkle Toes....traci

sueUK

Hi Traci, I am adoring the sound of your new Christmas tree, and I dont know if its possible around here but i will be wanting to see a piccie of that when the time comes (you dont have it up and decorated already do you???lol!) I have a fake but pretty realistic looking tree in my crafty room which has fairy lights on it...plus little handcrafted gifts I have been sent or have made - I love fairy lights and they are too pretty to be saved just for Christmas!

Now then, I get a tad confused where we are time wise with each other, so I have been sending you sparkles for today, yesterday and tomorrow which should cover your return to work! Have you been away some time or is this a new job Traci? How are you coping with your back pains right now, and do you have any further check-ups coming up?

I felt very guilty being off work when we thought it was slipped discs, but then suddenly I didnt feel guilty any more..ahem! I am very lucky to still be paid for up to 6 months in any one year, then maybe half pay after that - I do work for a fantastic company and that is at least one worry that I dont have. I was beginning to find my work a little boring...I zap products on shelves in a supermarket to check prices are correct, and generally keep the store legal in that respect....but now that is me who will need zapping, I want to go back...sigh! lol! 

Well, its a quarter to midnight here at this moment, and I have my GP appointment at 9.10 in the morning...phew...I am well ready for it! My pain has been pretty excruciating today when attempting to walk, and in a sense thats not a bad thing as I will be in the right frame of mind to ask, beg...and if I could, get down on my knees, and ask for some SERIOUS pain relief...I cant go on like this a moment longer. I know I was waiting for the full picture, and treatment was my main concern, but clearly...the pain being unmanaged, its all got very much out of control. I have no idea what she can offer me...especially as I am still adamant that she doesnt seek out my CT results at this point, but hopefully there will be something. Also, as far as I am aware, the team meeting at the hossie will be tomorrow morning so surely an appointment with them WILL be forthcoming very soon. I will let you know as soon as I know anything, but dont be surprised if I come along in some 'drug addled, pain-free, dancing with the fairies' kind of state...bring it on I say!  

Today I have been watching the miners come up and how fantastic that has been! The last time I looked it was 26 - they may all be out and free by the time I have had my sleep. It is such a heartwarming story and doesnt it make a lovely change to have some good news hogging the news channels!

Well, my nest calls so I will beam those sparkles out there for your back Traci, your return to work and to all you lovely ladies that could use some...they are packed with magic! 

Hugs, Sue x

Leah_S

Sue, best of luck tomorrow. I hope they give you some SERIOUS pain relievers!

Now this time thing - you're one hour earlier than I am, but Israel has already switched the clocks to to Winter Time. I know that we're now 6 hours later than the East Coast of the U.S., so you would be 5 hours earlier. That will change when the clocks change in the States. Do you change in England? Don't remember.

Leah

LRM216

Gads, all these time differences are so confusing!  Sue, not sure if you have seen your dr. yet, or if it's still tomorrow (Thursday here) - but I am wishing you complete pain relief and some info on your next appt.  Hugs and all good wishes, Sue.

Linda

sueUK

Still havent made it to my nest yet....I had SO much work to do on my farms and other daft things on facebook.

Hello to Leah and Linda, so lovely to hear from you - its great to collect more hugs and hand out some of my sparkles to you too.

Now I really am quite 'numerically challenged' so your post just had my brain curdling Leah lol! All I can say is that it is Thursday here right now, but just 1.14 in the morning.

My kitties are hinting...come on Mummy, its time for bed and tickles...so off I go!

Catch you again in (my) morning!

Hugs & sparkles, Sue x

squidwitch42

Sue,

You totally make me smile. I think you must have picked up on my intentions to decorate sooner than later, and yes, I will take a picture. I am the one that does the XMAS decorations for my landlords, and they have an actual live "XMAS" tree that is perfectly shaped in front of their rowhouse. I live in the basement apt below, so I can see all of the lights on the tree from my window.

I also jazz up my Dad's front porch with lights and bows where he is in an Independent Living facility. I am a huge fan of the elderly, and we got so many thanks and kudos last year for brightening up the courtyard. I had found gold tinted lights along with white lights, to put along with the big dark red bows.  

I use colored lights for my landlords, as my landlord has a yen for all things bright and loud. If I get a little help with lifting, then out come the reindeer, sleigh and they are lined with white lights, and red/gold beaded reigns. (this is for my landlords place, Dad's has more refinement, LOL.)

I then decorate the non working brick fireplace in my apartment, and it is covered with lights, Angels, glass XMAS trees and a little winter village. I sleep with the XMAS lights on for about a month in season, and it's ethereal (at least I think so.)

My mother and I started a tradition many years back that we kept going for several years. Their neighbor built them a trellis to train my mom's beautiful vines/flowers, and she had it displayed in the front of the house. It stood six feet tall, and was painted white. She brought it in one year (she was very creative and artistic,) and started to put some live greenery on it. It was narrower at the top, and came to a triangle like point, so it had an XMAS tree like look to it. I then started to decorate with beautiful garlands, and her lifelike plastic fruit pieces she had purchased when she was first married (to use on her dinner table for decor.) Next thing you know, I am out at the local garden store, buying gorgeous grapes/berries/cranberries/goldbeaded garlands, little birds/cardinals, and finishing with fairy lights to decorate the trellis. I even put our ornaments with our 30 year old Angel on top. We would then invite our neighbors over for cookies and wine, to show our appreciation of the trellis. Every year I would change the theme of our trellis decorations such as red bows, glass ornaments, and lights. Or minimalist with live greens, fruits and lights.

After mom passed I did a special tribute, and my Sister who is a graphic artist ended up using the pictures she took of my "masterpiece" to use as a choice of XMAS cards for her clients. That year, a big client used it for their annual card to give to their employees! The trellis has since gone back outside, as my Dad has downsized to an apartment.  I still decorate it outside with the same excitement, although only with hardy decor as he lives up in Rochester, NY (brrrrrr.) My Sister could not care less about the decorations, so I have complete artistic control, and my Dad did such a beautiful job on his indoor decor last year, (yes we have a fake tree) ....that it seemed like mom must have been there decorating alongside him.

So thanks for listening to my twinkly story!

You are so sweet to send me sparkles to fix my back. I'll take them whenever you want to wave your wand and send them over the pond at me. I'll send you some twinkly glitter, put it in a magical straw, blow it towards the moon, and let it be carried to you by fairies on flying seahorses. I am so sorry for your pain Sue. It may seem "barbaric" but I understand how it helps to be your advocate when you are in touch with how bad your pain is. I tend to say...I'm hanging in there a lot, but have since learned pain does not make me heroic in any way. Pain makes me distracted and unable to function. I did get my back belt back on yesterday and today...and will continue to take better care of my back including getting on the floor and working on my core strength.

Enough about moi, however. Do you think your team will have met by the time you are seeing your MD, or is there any conversation that can take place in "real time?" Will your oncologist meet with you in your primary care MD's office (come over to where you are?) Some things to think about and discuss perhaps with your MD is long acting pain relievers/narcotics vs short acting. People tend to use less pain meds, when there is a steady state in the system, and you are not coming in and out of pain. It takes so much more to get you out of a pain crisis, and we in the states lean towards a number system to describe how much pain we are in (0-10, with 10 being excruciating.) If you can jot down a few things to share, such as the quality of the pain (burning, sharp, stabbing,) intermittent vs continuous, and what helps to alleviate it, if at all. Sitting vs standing, walking. Does is get better when lying down, does it wake you up out of sleep? worse in AM?, does it progress as the day goes on? What is the lowest pain number you have achieved when using your current meds? The other part of long acting meds is that they can start with low doses to see your response, and utilize short acting narcotics to assist with breakthrough pain (pain that exists in the presence of long acting pain meds. ) Your quality of life should get better Sue, and just tell it like it is. I pray this is turned around soon, and you deserve to be out of this pain.

The miners has been such a heartwarming triumph of will, spirituality, teamwork, brotherhood and the love of family and friends. I pray all will be well and supported in their extended recovery. I am also very happy that you are supported from your workplace, that you work for a fantastic company, and that you are no longer having guilt. Just take care of you.

I have been so very blessed with my work. I am well aware of certain systems that do not support sick employees, and my boss has been wonderful. I was temporarily assigned to a big auditing project, which I enjoyed, and also allowed me to show another side of me to my boss. We worked side by side on many days, and we are working to improve our health care delivery using what we gleaned from the audit. Win Win. I have been back part time, with part time Long term disability, which I am also so grateful for. I had an extended illness a few years back, and did not have any support having been at a new hospital for only 3 months when I was taken ill. It ruined me financially, and only by the grace of my father did I not become homeless. I am so grateful I don't have words. I am starting to increase my hours as they are getting my thyroid under control, and am going to have my three years with the company in November.

well, that's my story for now. You are hopefully head on pillow having dreams of spun gold and tea cakes, talking cats and unicorns. Blessings for tomorrow, and I will check back to see how it all went.

P.S., the Tina Sparkle reference is from Strictly Ballroom. Have you seen it?

Twinkles!

traci