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

squidwitch42

Sue,

Yes your sparkles do give great comfort! My boa constrictor has released his grasp for now. But there are some decisions to make, and if you ever want to share your Lat Flap experience, I am all ears. Now I am craving a big mac too! I don't eat them either....normally. I did get a pizza hut pizza during chemo, meat lovers, and I was on a mission, not to be denied. so how was your rads today? I did the boob rads, so that's my perspective. Sue, you are so delightful, and such a cheer to us all, so I hope you know how we are all rooting for you. Did you update your blog with more works of art? I got two new Angels, 4.00 a piece, and one is an ornament, with a bell. Four dollars! I might get a few more tomorrow...Have a great day, Oh One of the Sparkle

sueUK

A quick hello to you Traci to say that Im SO glad that the BOA has had the good grace to ease off for a bit. Anything you want to know about lat flap, just ask away...are you thinking of trading in your expanders then???

Time check UK...its is 11.44am, so my second round of ZAPPING is a few hours away yet but I will be along later (I hope) to let you know how it went. Dare I say it, I do feel a little bit improved today - not as sore and stiff as I normally am on getting out of bed...mmmm....that bodes well. However, I have to keep in mind that the good and bad effects of the rads will build up over the days, so I shouldnt jump for joy just yet (as if I could...Im not THAT much improved lol!)

I havent added any new works or art to my blog since the little wreath I made recently...I dont know whether you saw that? Currently I am recording my daily experience with the rads on my blog, but then if there is any crafty news...creations or more likely...crafty purchases to report, that goes on there too. Its my way of keeping my girls at work informed about how things are going as I cant be doing with long phone calls, and you know me...if I can chuck a bit of humour in there too, then all the better!

Righty, I really must get down to some serious water guzzling, and have my cereal....just in case the urge for a burger or some other fast food doesnt hit me this time.

Take care girls, wishing you a happy Thursday all round (and I really did have to think about that...I just feels like a Friday!)

Hugs & sparkles, Sue xxx

squidwitch42

Hi Sue,

Thinking of you!

sunnyhou

thinking of you too Sue

hope the second round went much much better

hugs and love

LRM216

Hi Sue:

Sending you all good wishes and am thinking about you too.

Linda

sueUK

Hello all, I hope this finds you in a comfy and happy place!

I do apologise for my absence...Ive radiation no.4 out of the way now and a weekend inbetween, but I have been SO sleepy! Not an unpleasant feeling....snuggling on the sofa - not a bad way to spend the evenings, but it has made the days kind of fly by so that I dont even know what day it is! Its a good job I have my sister around to remind me to do this and that, and get to appointments, she is being such a star for me right now.

Treatment is going very well, Ive no real nasty side-effects so far, although the soreness in my hip has increased a little - they said it would get worse before it got better, so I guess the treatment is doing its job which is always a good feeling! After dose 3 I had one little wobble as we were coming down in the lift (your elevator) at the hospital, like I might fall over, but that passed very quickly and hasnt come back. The only other odd thing is the feeling like I have swallowed something like acid in my throat...is that what you call heartburn but higher up? Not a nice feeling but it goes off fairly quickly so nothing I cant handle so far. They said I would feel tired, but not 'go to sleep' tired, more like a fatigue.....well, I can assure them, its been very much 'go to sleep' tired lol!

I had the usual battle at the surgery today when I went to collect my meds....there were two items they wouldnt give me as they said I had ordered them too early. Looking at the paperwork I could see that they had only prescribed two weeks worth of these things but would only let me have them once a month....tut.....what is the point in that? I fought to speak to a doctor but the harridan on the reception wasnt having any of it, but I did get a doc to phone me later at home. She was lovely (thank goodness) and has corrected the paperwork and will have a prescription waiting for me for my missing meds tomorrow. Its just getting past those horrors on the desk that is the problem...do you have the same issues over there? Doctors receptionists are famed for it over here.

Remember the other Sunday I had that awful day where my head was all messed up? Well, I could feel myself going again this Sunday....I wonder what it is about Sundays that sends me off the rails...no day is any different to any other day really? However, I had the right meds in the house to see it off before it took hold which was a great relief, and generally I have been feeling on the up.

Still no crafting...goodness, I would fall asleep in my pots of beads, but I have managed a few crafty purchases, some very pretty paper, ribbons and other embellies - all very nice to drool over on a wet and windy day!

Well, thats me....how about you all, I would love to hear how you are all getting along just now?

Lots of belated hugs and sparkles for you!

Sue x 

jacksnana

Hi Sue,  so glad your sister is there with you and is being such a help - it probably does her as much as good as it does you.  Sometimes you can feel pretty helpless when somebody you love is going through all this.  Maybe feeling sleepy isn't such a bad thing... I know I've kind of felt that way sometimes, a "wake me when it's over" kind of thing!

My brother had radiation for pain management for mesothelioma and it really did help him with the pain.  Hope you get through the "worse"  part and get to the "better" part really soon.  Sorry about the burning feeling - does sipping on a smoothie or eating ice cream help at all?  Seems like he did like the cool, creamy things at the time. 

I'm an old crafter myself, but haven't done much in years.  Over halloween I got out a full-size macrame skeleton I made way back in the day.  Even some of the kids who came to the door commented on it - it looked pretty real.  Maybe I should get back to some of that to keep my mind and hands busy!!  If you're comfortable sharing it I'd love to check out your blog. 

Hope your days keep getting better and better.  Sounds like mentally and emotionally you're doing great - keep on keeping on!  Lots of hugs and sparkles right back at ya - Veda 

squidwitch42

Sue,

I fell asleep before I was able to send you Sparkles, Twinkles and Fairy Dust. I'm very glad you have been able to sleep. Fatigue and sleepiness will hopefully intertwine for you. Such a blessing to have your Sister there. My Sister came to help me, and even though this was probably the Last thing on earth she would want to do, she did a pretty good job. she doesn't even like to set foot inside a hospital, whereas I was always game to visit anyone in the hospital, so I made it my career. It sounds like you have some yummy craft embellishments to play with at a later date.

My landlord and I have already discussed X MAS lights..and well, there is a chance you may be able to see us from across the Pond.

You know whats weird? I too have the Sunday funk, and have since I was a child. not sure what it is rooted in, but it's the hardest day of the week. Sounds of Football just exacerbate it...and not like your Football, our Neanderthal game where men "run" about two feet than fall over. Your Football has true skill and well, you have to be pretty fit. (sorry any football lovers out there

So I wish you great days ahead, minimal side effects from your radiation, excepting the good ones, like complete relief of pain.

We'll talk crafts again, and it seems like we have several "crafters' here...Hi Veda!

Hugs, Sparkles and Sprinkles!

sueUK

Good evening girls, hows it going with you all...a comfy and sparkly day all round I hope!

Oooo I woke with a very naughty hip today, my it was painful...like maybe I had forgotten to take my meds last night, but I know I hadnt as I write them all down...I have to otherwise Id never know where I was! Just that 'feeling worse before it gets better' thing going on I guess. One thing it did press home though was that my meds are generally doing a bloody good job, as that was how painful it used to be ALL the time...you kind of forget dont you. However, my morning meds and regular top ups of  breakthrough goop has made things feel a lot more comfy again...phew!

We had a nice quick session at the hosptial today - not too much waiting about, and home again without any hassles along the way. My appointment is nearer tea time tomorrow so my sister and I have pencilled ourselves in for another scrummy burger on the way home...nice!

Veda, how nice to know that you like crafting too...even if you are a lapsed crafter, maybe we can inspire you to have another dabble. Im more than happy to share my blog with you - the link to the front page is:

 http://sue-bubbles.blogspot.com/

The last few weeks have been taken up with the highs and lows of my illness and treatment, with the odd crafty project tucked in there...but if you go back to older posts you will be able to see my random selection of crafty projects and generally bonkers things that go on in my life. I will be glad when I can bring it back round to more crafting, but despite having enough stash to open up my own shop (or three), I find my mojo has taken itself on its holidays!

Its odd about the Sunday 'funk' isnt it Traci (not heard that word before but its sounds just right lol!) I remember as a child not liking Sundays as everything seemed so boring - shops werent allowed to open, dull stuff would be on the tele...and I dont know, it just seemed like a drab day. But why that feeling goes on now when Sundays are like any other day I dont know - in fact its a better day for me as my sister spends most of the day here and we do our puzzles, and when i was fit, we would wander up to the mall for a mooch about. Just one of those weirdy things that stays with you i guess.

Im glad to report that I got all my meds sorted out after the fuss at the surgery the other day. The doc who phoned me, sorted out my immediate needs and has made sure my repeat slips are in good order for next time...phew...thats a relief, thats just one worry we dont need eh! Do you have to purchase all your meds or does your insurance cover at least some of them? We are lucky here in that there are many groups of people who dont have to pay at all, and everyone else just pays about £7.50 or thereabouts for each item they need. Just a year or so ago our government created a new group that didnt need to pay - anyone who has meds for cancer ..and it means you dont have to pay for any of your meds, even those not directly associated with your cancer treatment. This was a huge relief as my carrier bag full of meds each month would cost me a fortune even at the flat rate per item. But I know have read on these boards that some of you pay huge amounts of money for your drugs, and I cant imagine the worry of that if you just dont have the money?! 

Ah well, my tea cup is empty which just wont do, so I shall go make a fresh cuppa then head over to facebook to play at being farmer for a bit.

Take care all, with oodles of fluffy spangly sparkles coming your way!

Sue x 

jacksnana

Hi Sue, Traci and all,

Oh Sue, I loved looking through the posts in your blog - and there's still more for me to explore.  It is a treat to see all you've done.   Love the wreaths and the Christmas cards - the ones you did with your embellishments and the ones from the kit, with your touches added, are beautiful also.  You have a great family (handsome boys!) and your projects are making me feel inspiried.  One year when money was a little tight I decorated probably 20 small wreaths that you could hang on the tree and gave them to neighbors and coworkers.  I hadn't thought about that in years, but I remember it was such fun. You definitely have a gift for crafting but also for writing.  At some point, when that nasty pain subsides and you are feeling much, much better, I really think you should write a book about this journey that you and so many of us are on.  You have such a way with words! 

It's probably just about your bedtime over there (are you about 6 hours ahead of us?) - I so hope your pain was better today. Glad all your meds are in order, that can be pretty overwhelming in itself.  So have a nice sleep and here's to all that zapping getting all those little buggers and that you're pain will be less everyday and totally gone soon. There is crafting to be done!  Hugs and healling,  Veda

squidwitch42

Veda,

I agree, Sue should write a book. I didn't see her sons, so I must now have hit all of the right buttons on your Blog Sue, I will take another look You know, isn't that the joy of XMAS? Always the thought, and that's so much better than some big old impersonal gift. I just hung a small wreathe today inside my apartment that a co-worker had made for several of us. Sadly, she was let go, so it has extra sentimental value, and really has a piece of her spirit with it.

Sue, you asked a few questions and it started with receptionists. Yes, we have our share of real dolts, and it's a crap shoot. I always complemented this one woman who had all of the anonymity of a calling center, and she was the only pleasant helpful person to talk to. Even saying all the right words if you needed an appointment for urgent care if you weren't feeling well. Guess what? She's from England! Which clearly means we took your one great receptionist/call center operator. Sorry...

For co-pays, we all are a little different. We have a lot of different insurance plans here, and other Government funded insurance called medicare and medicaid. With private insurance, I have a three tier co-pay, and this is based on generic to meds that do not have a generic component, which cost the company more. There are also meds that are better for some people, even though a cheaper form is available. We have to pay more if our MD's want us to have the one that works for us so I either pay 10.00. 30.00 or 50.00. There is a nominal fee for some medicaid/medicare coverage, not sure how high those can go. Since I work with populations that cannot afford their meds, there are other avenues. Some pharmacies will agree to waive co-pays for medicaid/medicare if patients are unable to pay them (forms are filled out,) there is something called Needy Meds and this is sponsored by Pharmaceutical Companies. Pharm money is big money, and there are programs for meds made by the companies that are set up so patients do not have to pay anything. I've assisted with this many times, and I do encourage people to work with their MD's social workers and Nurses if they can not afford their meds. I used to save free samples for Pharm Reps and we would help our patients that way. There are agencies that do help with expensive meds like chemo etc..which are usually not for profit and use donations to help people in treatment. There are programs in the DC area and other states for example that enable patients to obtain HIV medications and other associated treatments that come along with this disease, which is incredibly important on many fronts. Public Health and disease transmission being one of them. Without these programs few could afford the 4,000.00 a month or more to keep their HIV at bay. I am gathering documentation to apply for co-pay relief, as you know, this adds up. Even two meds in the third tier adds 100.00 a month to ones cost of living. Emend and Zofran which were lifesavers for my nausea might bankrupt someone. But I know for sure Emend can be covered under Needy Meds.

So that's my story and I'm sticking with it!

I'm sorry that you still have really bad pain days, and appreciate the knowledge that your pain meds have brought you to a much better place overall. These medicines are a blessing for those in severe pain, and only receive a bad rep b/c some have abused them. Makes it harder for those who legitimately need them. I hope your pain gets better with your treatments! 

Oh, I FORGOT TO TELL YOU! I was walking home from my great adventure to go get my new sleeve and glove today, and lo and behold, I looked up and someone not only had their X MAS lights outside their window, and a wreathe on their door, but they had THEIR  XMAS TREE UP!!! It gave me pause, and I went in for a closer look. I couldn't see if they had presents under their tree,but I wouldn't be surprised if they didn't have a little workroom with Santa's Elves working fervently. I bowed to their greatness.

So I will check on your blog again, and wishing you dreams of riding on unicorns and limitless scrummy burgers...  

sueUK

Hi girls, long time no waffle! This is just a quicky as Ive just noticed that it is 4am and I really should head for my nest!

All my rads are done and lucky me...no cystitis, dodgy bottom or sore skin! Tiredness however...wow....Ive never known anything like it - sleep sleep sleep...thats me! I had my second dose of Zometa on Monday, and having taken the advice of other ladies on here I drank plenty of water and had the infusion done over 30 minutes instead of 15...and this I feel has prevented the horrid experience of last time. I have felt nauseous since but that has gone off now...again hooray!

I am now happy to sleep the days away and wait for the pain to disappear...that I will believe when I feel it...or rather DONT feel it! I just hope all this stuff is working its magic!

I hope you are all fine....Christmas really is nearly here now isnt it....gulp...Ive only bought one pressie and still havent a clue what to get everyone else...sigh! Oh well, it will soon be over lol!

Hugs & sparkles to you girls!

Sue x 

squidwitch42

Hi sue,

I lost my post last night, so I don't want you to think we didn't "see" you. I'll write back later, and so good to hear from you, hang in there friend.

jacksnana

Hi sue,

So happy to see your post.  Must be a relief to have your treatments finished and as you say, now just wait for the magic to happen!  How many more Zometa infusions?  I'm so glad you're able to get lots of rest. 

It sure can be a little bit stressful trying to figure out all the Christmas stuff.  Just having an idea of what to get is more than half the battle.  Once I'm armed with my list I'm good to go.  We have an eight year old grandson, Jackson, and it is so fun to still have somebody who believes.  At least he's not saying if he doesn't believe, I think he may be afraid that Santa train will head off in another direction! 

Tomorrow I'm seeing a new internist.  My scans earlier this year showed cysts on my liver and kidney.  Not cancer, and at the time my doctor told me they were harmless, but now my friend Mr. Google has gotten me all freaked out about the possiblity that I have polycystic kidney disease.  If I could only stay off the darn internet!

Again, so glad to hear from you.  Know that you're in my prayers.  Hugs and healing... Veda

sueUK

Oh Veda...when you have been told all is well.....step away from dr google!!! It is so easy to freak ourselves out isnt it! I hope your new internist will reassure you and you can put the nasty thoughts away my lovely!

Well, I spoke a bit too soon when I said the nausea had passed, That good feeling lasted a few hours and the nausea has been back with a vengance - feel generally very yukky to be honest, cant face food at all and its all I can do to sip at a cup of tea...and normally tea is my LIFE lol! The good thing is, Im just about keeping my head straight - as you know that is my worst feeling when my head gets messed up, all else I can plod along with and just hope it buggers off soon! I guess I will have to discuss anti-nausea meds when I next speak to the doc - she offered them to me before but I had no need then. Im putting this down to the zometa - maybe the one horrendous night last time was better than this lingering yukkiness...Im not sure. Still I have a couple more weeks before the next dose so will get prepared once again. I have to have it every 3 weeks for as long as its working Veda...yikes. Mind you, how they will know if its working I dont know. How do they know if any of this is working?

Oh well, back to some more resting! Good luck with your appointment Veda, and hugs and sparkles to all of you...I hope things are going along okay for you!

Sue xxx

jacksnana

Hi everyone, 

Sue,  that nauseated feeling is the worst!  Can your doctor get you a script for it so you don't have to wait three weeks?  I didn't always need it during chemo, but just knowing I had it there in case I did need it made me feel better.  You didn't say how your pain was, much, much better I hope.

My doctor did reassure me but says we'll keep a check on things and do an ultrasound in six months.  I've never really been so hypersensitive about my body until BC and now every little thing just about pushes me over the edge.  I hate feeling like this and having all this anxiety, but I think it probably just goes with the territory in this journey we're on. 

I've got a busy week cooking and getting ready for Thanksgiving.  I love it though, makes things feel normal, and it sure beats last year at this time when I was just trying to recover from my mastectomy!  I'm so grateful.

Have you felt like crafting at all?  I'm trying to come up with a good recipe to make and give to neighbors.  A couple of  years ago I made goodies and decorated them with a little glass ornament that I covered with glue and sprinkled with glitter (sparkles!) and pretty bows. I used all different, non-traditional colors.  Don't think that really qualifies as crafting, but it was fun.  Wish I could come up with a good idea.  Any suggestions? 

Hope this finds you feeling much better, pain and nausea be gone!!!   Hugs,  Veda

squidwitch42

Wrapping you all up in Hugs and Sparkles!!! 

Veda, I hope you enjoy your Thanksgiving preparations, and that you remember who you are and always have been Cooking is such a lovely art form, that's why I like to watch.

Sue, you are not far from my thoughts, I have been a tad out of sorts, but will come back to my own soon enough.

Take Care All,

traci

jacksnana

Hi ya'll,

Traci, you and Sue both always have the sweetest words. I hope you have a great Thanksgiving.  I really do love to cook and having somebody keeping me company in the kitchen is the best.  So don't minimize the "watching" part, ha!  Hope you're feeling back to your self really soon. 

Sue, take care, hope each day is finding you feeling so much better!    Veda

squidwitch42

Checking in on you all

Sue,

As the time of sparkle and creativity approaches, I think of you every time I see something I know would tickle your crafty heart. I know you are having a rough time of it, and I am so sorry. I keep hoping this will get better for you soon.You are such a trooper. I wanted you to know I think of you often. I had asked my dad repeatedly "what do you want for Christmas..." and the answer is always to see me and my dog. He had mistakenly erased a message where I was so excited to learn that my sister would be picking me and my fur kiddo up and driving us up north to spend time with Dad for XMas. He was so upset that he lost the excitement in my voice as I learned we would be together as a family. So it hit me....He was so tickled with the photo album last year, so how about a scrap book full of memories? I am going to write little stories and memories from growing up, many that he would be surprised that I can remember. Then I shall make the book sparkle!! This will give him hours of memories and so I need to start today. I plan on buying a scrapbook this afternoon at our Target.

(speaking of Sparkle, don't forget Strictly Ballroom on an afternoon where you are bored and want a laugh)

So I hope you are feeling a bit better. Sending you Big Hugs across the Pond.

PS, do you plan on watching the wedding of the next generation of Royals? I woke up early with my mom and watched Princess Diana get married. What memories, she truly left a mark forever.

and Veda,

How was your Thanksgiving? Are you deep in plans for goodies to give to the neighbors?

squidwitch42

Sue,

I look for you everyday (no pressure.) I want you to know we are all thinking about you and wishing you the best.

Hugs and Sparkles,

traci

LRM216

Sue:

Just want to let you know that you are not "out of sight, out of mind."  I think of you always and am hoping all is going well. 

Linda

jacksnana

Sue,

me too... I come back here often to check on you.  Just know that you are cared about.  Hope you are feeling much better and happily crafting!    Veda

Sunbunny

Hello Sue,

 You don't know me but I accidently learned about you through your posts.  I am sending you strength, hugs and so many warm thoughts.  I miss your sparkly posts of your sons and dad.  Please know you are loved for who you are sweety...a one of a kind lady!

squidwitch42

Sue,

I was sitting here thinking of you, and the words Sparkle! came on the television, kid you not. I worry at your absence from the boards, and can only say I am thinking of you, and so are many more. I do say a prayer or two as well, and sometimes I just think it's important to let others know how special they are.

Bless you Sue, and many Hugs and Sparkles, we will keep the Disco Ball on for you

Traci

sunnyhou

Traci

I was worried too. I went to her blog and she has posted there recently. She mentions her blog in one of the above posts. She is super creative and talk a lot about what she is up to in her crafty, sparkly world. Such a doll..

xxoo

sunnyhou

found it.. she has even updated it today.

here it is

http://sue-bubbles.blogspot.com/

squidwitch42

sunnyhou,

Oh, that's wonderful news! Maybe she needs to be in her crafty world, and I am happy for that. I have been scrapbooking for one of my Dad's gifts. I found something called Graphic 45, and they have the coolest papers, beautiful stuff! So I will swing by her blog and check it out later. Thanks again for checking up on her

xxoo

squidwitch42

Merry Christmas Sue and All,

May it be a happy one, full of Sparkles. Mine is already sparkling and I am going to ramp up my Dad's decor (which he does a beautiful job of BTW I have more fairly lights (the English for our XMas lights,) and awesome scrapbook that I have been working on for Dad, and I am ready to roll.

Happy Holidays,

Traci

LRM216

Sue and all my other dear sisters on this thread-

Want to wish you all a beautiful Christmas, and may the new year be kind to all of us.

Linda

squidwitch42