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4001. 4000!?! Woohoo!
Thanks Casey and Bogeyi - wow! I'm stunned that little old me started this mammoth thread LOL (((((Huge hugs))))) to all my MB friends :o)
soniat-d (153 ) 10:03 am, 2 Jul
Just showed Chris he thought it was cool too. ((((((((((HUGS)))))))))) to you Sonia - you are a TM MB Legend! So glad you started this thread. Thanks xo
paulaxx (77 ) 10:05 am, 2 Jul
4003. OMG!!!! Congratulations
Sonia and everyone involved in this wonderful thread. You are all fantastic caring people and I am honoured to be a very small part of it. Wishing all a great day & sending strength & warm fuzzies to all!!!! All the best, Claire XXX
cole2 (361 ) 11:01 am, 2 Jul
4004. what a wonderful day
the sun is shining birds are singing and I'm pain free today. my wish for you all is that you also have a great day.my darling man has cooked the traditional roast lunch and served it outside in the veranda in the sun.we have gone from -4 this morning to a beautiful sunny day so I'm off to sit outside and enjoy.
yawhwat (53 ) 1:12 pm, 2 Jul
4005. Hi ladies and kids, I'm just off out for the after
noon, to drop my daughter off and then to visit a friend. Hope you're all having a fab day. Love and hugs all round...
joystik (281 ) 1:15 pm, 2 Jul
4006. Hi everyone....
its taken me ages to catch up on 3 days postings! Hope Joshi is feeling better now Paula. Bigs hugs to all the kids out there going thru treatment at moment. Maewest hope you really enjoy your days off!!!! Don't know how you do it. Joystik hope you get your port in this week. Can't understand why they didn't do it before your first chemo especially when they knock you out. Yep I had my under local in morning and first chemo in afternoon and all was fine. Bit tender for couple of days. Glad chemo is going well for you. Sorry wasn't my gums sore but my tongue. I went to Dr though and he gave me some dental paste to use and cleared up the ulcers in under 24 hours. So ASK as I wished I hadn't put up with it for so long.
landylass (48 ) 1:38 pm, 2 Jul
4007. I had ice on Friday getting
back to Dunedin as it had rained the night before! At least it was sunny and I just took it careful. Had my treatment and debated if I would go shopping or head home to the annual grudge rugby match between the two high schools and that won out as it was a lovely sunny day. Road was a lot better going home as sun had got to most spots. So spent nearly 3 hours on road for 20 mins there! Both my kids were at the grudge match and it was great entertainment. Lots of hakas, and good humoured abuse thrown at opposing schools. Miss16 attends the girls high and all the 7 formers got to go to the match. Mr14 was there too. One of our employees from the opposing school scored a try right on full time and made it a 12 all draw. It was funny watching all the old timers who thought our school had it in the bag!
landylass (48 ) 1:45 pm, 2 Jul
4008. So are you slathering on the aqueous cream
Landylass? What shape is your treatment area out of interest? My first standard one was like an upside down archway (or oval with the top half chpped off). How are you finding it? Do you get the same staff every day?
soniat-d (153 ) 1:48 pm, 2 Jul
4009. I have done absolutely
nothing this weekend and loved every minute of it! Had a rash about Tuesday on radiation area but think it was shampoo that I used. Away back to Dunedin in morning but this week is a short one for me as no appointment Fri due to machine maintenance and an early one Thurs means a 4 day weekend. Snow is predicted on Tuesday but I won't be on the road that day. Have a good week everyone and hope all those with sickness and low blood counts, pick up. My two have both had sore throats for 2 weeks but nothing futher and novavirus has hit town and closed one rest home and caused a few cases out round town. Best I go back south quick!!!!
landylass (48 ) 1:49 pm, 2 Jul
4010. Different staff every day,
keeping up the cream. They are going in on an angle getting the inside edge of left boob, whole of right boob, and a small part of right armpit. The major aim are the lymph nodes deep in the middle of my chest. Going fine so far but early days yet. Couple of people went home after 4 weeks treatment from Cancer House last week. One lady had red looking burn but she said it wasn't sore. Just taking each day as it comes and see what develops! Getting a bit sick of driving on ice though!
landylass (48 ) 1:52 pm, 2 Jul
4011. Can anyone tell me if wee
Corrina is still hanging in? Her threads seemed to have disappeared yet again.
landylass (48 ) 1:54 pm, 2 Jul
4012. Hi Landylass, Corrina is a brave wee fighter
I just got this off her website - "Jul 2 2006 02:21 pm ***MESSAGE FROM CHRIS***Corrina had a pretty good night last night.She decided to get up at about 9pm and play with all her noisy toys, and play and play and play lol then when she was tired out she got her pain relief about midnight and went to bed.Today she is doing well to, she has her other grandma and grandad visiting her today.Hopefully she will have the rest of today happily playing to.Will do another update later when we see her.Thanks for your lovely messages.love and hugs chris xxx"
meridian1 (294 ) 2:04 pm, 2 Jul
4013. Hi what lovely wee girls
Lydia, Emily and Cassie. Lydia is your double Sonia they look so cute. Hope you all have a nice day it is sort of cold and cloudy here today feel like running off too the shop for apples for crumble might used tinned peaches instead.I am off to CH CH tomorrow for a few days to see my grands will miss you all so take care and god bless. Bet
boop2 (106 ) 2:16 pm, 2 Jul
4014. That's odd
Ive just noticed the Date and time on the message from Chris on Corrina's website. It doesn't add up, but I expect it was just a wee typo. Maybe she meant 12.21pm.
meridian1 (294 ) 2:18 pm, 2 Jul
4015. Hi what lovely wee girls
Lydia, Emily and Cassie. Lydia is your double Sonia they look so cute. Hope you all have a nice day it is sort of cold and cloudy here today feel like running off too the shop for apples for crumble might used tinned peaches instead.I am off to CH CH tomorrow for a few days to see my grands will miss you all so take care and god bless. here is my precious wee grandaughter she only loves her pj's. Lives on a farm and just loves her pig. http://images.trademe.co.nz/photoserver/16/23652816_full.jpg
boop2 (106 ) 2:34 pm, 2 Jul
4016. Karen here
Hey Sonia,Paula and Bogey.Found out 2 hours ago that my That my Nan is in hospital.She has had two strokes this week.So bit upset.Going to Wellington in a few days.Cam is good today.Bruising has come up alot more.Litte rats that did this.I talked to each of them today and gave them a rark up.Jesse is at her fathers today.I gave Jesse my wedding rings cause she wanted them when i through Aaron out.She wears them now on her right hand and Aaron hates it.LOL.
globalandworlds (4) 3:09 pm, 2 Jul
hi how are you? good to see you are home and enjoying some resting up. was thinking about you during the week wondering how you where getting on.? we have had very up and down week in our house. he is getting excited about going away this week so i hope he remains stable while away. fingers crossed anyway. my kids have the bugs too so have had mr 13 home all week and gran has taken him away home to rest and recoup and spoil :) i bielive the wee angel corrina is still hanging in there. hope treatment is all going along ok for you all. And especially to the kids. keep warm :)
kiwikaz3 (8 ) 5:15 pm, 2 Jul
4018. hi everyone
we had an awesome day today I took the kids to butterfly creek, stayed for about 4 hours kids had a blast loved the petting zoo.Hope you all had a good day as well.
bogeyi (482 ) 5:41 pm, 2 Jul
4019. Thats cool bogeyi
We were there last weekend! Yep the girls loved the petting zoo best too ;o) Hi everyone, sorry only in here for a sec, gotta cook din dins now ;o) Have a nice evening :o)
soniat-d (153 ) 6:02 pm, 2 Jul
4020. LOL Jesse came home from her fathers in a poop
today.She just doesnt like him ay its so hard case but she has to tolerate him.Cam is quiet around him as well.Cams swelling has gone down alot.Boys are very apologetic.
globalandworlds (4) 6:02 pm, 2 Jul
4021. Wow Global
That great that the boys are apologetic :o) Fingers crossed as goes OK on Monday. Glad the swelling going down - I'm still astounded that 12 year old boys could do that. They grow up so quickly these days :o/ !!!
soniat-d (153 ) 6:05 pm, 2 Jul
Lovely photo Boop. How cute in her jamas out there! Bogey & Sonia that Butterfly place sounds awesome. Glad you had a neat day too. Chris and I both thought about visiting Joystik today, but with her being Neutrapenic and Josh not 100% I would never forgive myself if we gave her something. Next time hopefully!!So instead I typed for about 3 hours on Josh's website updating his journal on our everyday bits since we were diagnosed only got as far as when we finally got home from Christchurch in November. Man it bought it all back just what hes been through. Glad I kept a journal. Cos you do forget so much! Will plug away at it again, when I can. Off to dish up the roast lamb. Have a good night everyone. Thinking of you
paulaxx (77 ) 6:32 pm, 2 Jul
4023. WOW (wipes tears away)
Paula I have just read Joshs site, what a journey you guys have been on. Paula can I ask did the drug cause the hemmorage?one of those risks thats out of our hands.
bogeyi (482 ) 7:36 pm, 2 Jul
4024. Hey Bogey
Yeah its a really tough one that one. Yes the drug did cause it. Took ages to realise what had happened. It is a risk. But one I would take again (not with that drug) because the alternative isnt great is it? They removed that one from the protocol hes on. I read your journal the other night and was talking to my hubby about it. You too have had a journey and a half!! Its still just one day at a time isnt it... xo
paulaxx (77 ) 8:54 pm, 2 Jul
4025. Thats right Paula while one child may handle
some drugs, another may react differently.Hes such a brave wee man, I hope one day the boys can meet.
bogeyi (482 ) 9:02 pm, 2 Jul
I was just thinking the same thing! Thanks. I hope they can too, cos that means we will as well.
paulaxx (77 ) 9:07 pm, 2 Jul
4027. Oh Paula, I have spent ages crying my way
through Joshi's journel. It is so sad what that poor little bloke has been thru. It almost breaks my heart to read it all so I can only just imagine what it been like for you all as a family. Its a wonder the poor kid can smile at all at times. But of course you do and you keep on going, knowing that tomorrow is another day, and a better day and one day closer to being back to super health again. I just told a lady the other day, on this journey you have good days and better days! Dont even think about bad days. Thanks fo sharing that with us all, it certainly makes me think how lucky I am. Would have been lovely to see you all today, but probably health wise not the best timing as its turned out. We ended up ot going to our friends, just dropped Lauren off at cardmaking and came home. I made the famous vege soup for tea, and did very little else!! Love and hugs to you all
joystik (281 ) 9:36 pm, 2 Jul
4028. Bogeyi, sounds like you had a lovely time at ....
Butterfly creek. Rather a beautiful plae by the look at their website. My Lauren would love that place, shes right into stuff like that. Glad Ryan is feeling ok at present too. Love and hugs to you all.
joystik (281 ) 9:52 pm, 2 Jul
what a strong little man you have. My heart is breaking thinking of all he has been through (and of course you Chris and Cass). What a darling she looks in her fairy costume! Aren't the tender moments shared between siblings soooooo special :-). My two are 5 (Lennon) and 10 (Phoebe). It makes me really proud to see them caring for each other. Hope Joshi he feeling better!
meridian1 (294 ) 9:54 pm, 2 Jul
4030. Hi All
I can't get into Joshi's site at the moment - says I overstayed the allowed time last time - must have forgotten to close the window. Will try again later. Sounds like a must-read, sorry to hear its been so awful Paula. I can barely imagine... We've had a rough time with the girls today, don't know what's wrong with Emily - a trial all day so guess we're off to the docs tomorrow. Lydia burst into tears out of the blue tonight as I was singing goodnight to her. She said she was "worried about my boobie getting worser" - its a tough one to navigate. Oh well, house is a bombsite, will do half-an-hours worth and lie down. Been a yucky day (weather was gorgeous though). Hopefully after a good sleep they'll be better tomorrow. ((((hugs)))) to you all.
soniat-d (153 ) 9:54 pm, 2 Jul
Glad to hear you had a lovely day. I loved the photos of Ryan you linked earlier. I presume that was your other son in one of the photos. Very handsome boys!!!!
meridian1 (294 ) 9:57 pm, 2 Jul
4032. Ryan is bogeyi's boy Meridian ;o)
Paula's Joshi is a stunner too :o) How are you this evening Meridian?
soniat-d (153 ) 10:02 pm, 2 Jul
4033. Sonia, your two girls are just beautiful, truely..
they are just like you, and you are beautiful too. Those pics of them in their ballet costumes are just lovely. No wonder you are such a proud mummy.. Glad you have had a super weekend. Love and hugs to you and yours Sonia....
joystik (281 ) 10:03 pm, 2 Jul
4034. Oh dear Paula
your poor little ballerinas. Isn't it horrible when they worry. I hope things are better tomorrow, and that Emily perks up. I think you are a fabulous Mummy. The photos of the girls are so cool! My ultrasound is tomorrow. I wish it was earlier - 4.30pm means I have to be anxious all day. Well, at least I will have the children here to distract me. Wish me well. (BTW - my name is Shirree).
meridian1 (294 ) 10:05 pm, 2 Jul
4035. meridian yes thats my youngest Tyler 5
peeking at the back, he is Ryans donor.
bogeyi (482 ) 10:07 pm, 2 Jul
4036. Oops Paula - I knew that
but you are absolutely right ... Joshi IS a stunner, and so is Cass. The previous post was meant for bogeyi - silly me!
meridian1 (294 ) 10:07 pm, 2 Jul
4037. I'll be thinking of you then Shirree
Thanks for letting me know, I was wondering when it was... I'll send as many positive vibes as I can in your direction and hope for the best. Let us know how you get on. Be glad for the distraction of kids - at least they make the hours fly by!
soniat-d (153 ) 10:09 pm, 2 Jul
4038. You keep calling me Paula too Meridian LOL
I'm flattered, as shes a real stunner ;o)
soniat-d (153 ) 10:10 pm, 2 Jul
4039. Sorry Sonia, you day wasn't as good as it started
out. We all have those days dont we, even little people. It must be hard for Lydia, and she obviously has some understanding about what is happening for you. Poor wee doll. Give her an extra long hug from me and wee Emily too.
joystik (281 ) 10:10 pm, 2 Jul
4040. Seems I have Paula on the brain
Sorry Sonia - every one's name is Paula in my head tonight ;-)
meridian1 (294 ) 10:12 pm, 2 Jul
4041. bogeyi (got it right this time) *grins*
Tyler - what cool names your boys have. Do you have another child? What a special gift Tyler has given his big bro! Like you said on your site - true blood brothers! You certainly have heaps to be proud of!
meridian1 (294 ) 10:16 pm, 2 Jul
4042. Landylass, you are so busy, driving up and down
those terrible icy roads, having treatment and being the fabulous mum and being there for your kids. YOU ROCK!! Glad to hear its all going really good. You must be half way through almost now?? Is Sonia still there?? Say hello from me. I'm fine and have Oncology clinic with Dr Perez on tuesday, and will find out then what they ar doing about this port. The reason it hadn't been done before the chemo started, was because no one had asked for it!! Now the timing is seriously out of kilter. They may well do it this friday if the bloods are right and then put the chemo in straight after. Hope so...fingers crossed. I have a sore tongue too, not my mouth, just the tongue. Hair is just starting to come out a few strands at a time. Quite resigned to it now but guess it will a bit sad when it all goes. Had to wear a wee hat in bed last night cos my head was so sore.
joystik (281 ) 10:18 pm, 2 Jul
4043. My last post was too long....but I was going on to
say, when the cat came in with a mouse for me at 12.32am,he looked at me an growled. He didnt like the hat either. I took it off for him and my head wasn't hurting so much. Funny little boy!! Hope you have a good week, been lovely to catch up again. Love and extra hugs to you, and please do be really careful on those roads wont you???
joystik (281 ) 10:21 pm, 2 Jul
4044. Meridian, I will be thinking of you tomorrow too..
hope it all goes well for you. Take care and try not to stress about it. Hugs and special thoughts for you....
joystik (281 ) 10:23 pm, 2 Jul
4045. Hi Boop, you wee grand-daughter is beautiful too
How old is she?? About 3? Does she live near Westport or over in Canterbury? Is she the only one or do you have others?? Kevin has 9 all together, although 6 of them are in Aussie, ohh...and 1 great grandchild as of last week!! Well I guess they are mine too, seeing as I am married to him!! Doesn't seen quite right at 44 though. Hope you have had a nice weekend anyway. The tamarillos are delicious....I have been trying to not eat too many at once cos they sting the spots on my tongue. Have a nice time with the grandies. Love and hugs to you too....
joystik (281 ) 10:27 pm, 2 Jul
4046. Hi global, glad Cam is feeling better today, and
I hope he is feeling even better tomorrow. Probably a good thing its school holidays at the moment so he doesn't have to be with those 'rat-finks' if he doesn't want to. Sorry about your Nan - hope she will be ok too. Thinking about you all, love and hugs......
joystik (281 ) 10:30 pm, 2 Jul
4047. Hi Sonia
been following this thread and sending lots of positive vibes out to all the lovely people contributing. Just a question I have, did any of you doing chemotherapy lose your sense of taste at all, and how long after treatment, radiation and chemo did it come back?
stormbaby (2263 ) 10:31 pm, 2 Jul
4048. Kiwikaz, lovely to see you again...I had been
thinking about you during the week and wondering how things were in your house. School holidays now so that means different routines again doesnt it. Are you going away for the holidays?? We arent, but Lauren has gone to stay with a friend in Invercargill, so she was really happy. Take care and hugs to you all.....
joystik (281 ) 10:33 pm, 2 Jul
4049. Meridian, at least you only get peoples kids mixed
up. I go up the street and leave stuff cooking on the stove, and have to SOS the neighbour to get it turned off before the house burns down!!
joystik (281 ) 10:35 pm, 2 Jul
4050. I'm off to bed now.....nite nite everyone, and....
especially to anyone I havent posted a special message too. I think about everyone and read all your lovely messages. This thread is so big now. Thanks so much Sonia for starting this for us so we can all chat together. See you all tomorrow....sweet dreams everyone....
joystik (281 ) 10:37 pm, 2 Jul
4051. Aww joystick
you are a sweetie with your kind wishes (and trying to make me feel better about my fopahs). I didn't get the children mixed up - I knew exactly who belonged to who - my fingers just kept typing Paula. You are definately not the only one who leaves pots on the stove etc. I found that after my surgery my brain just went kaput! It still hasn't come right.
meridian1 (294 ) 10:41 pm, 2 Jul
I'm so sorry to hear about your Nan ... and poor Cam (give him a hug from me). I hope the boys who hurt Cam are very ashamed! It hasn't been a great weekend for you has it?
meridian1 (294 ) 10:50 pm, 2 Jul
4053. Goodnight girls
and thanks for everything. I truley appreciate all your kind words and thoughts, and feel really priviledged to be speaking with a bunch of such awesome, beautiful people. I will let you all know how things go tomorrow. Ohh - Paula - sorry for lending your name to everyone. It is not unusual for me to muddle names - the 3 boys I care for are named Jace, Jak and Jason - they all get called each other's names. On that note - goodnight once again.
meridian1 (294 ) 11:04 pm, 2 Jul
4054. Hi Stormbaby
I don't know if I lost my taste so much as lost my appetite. Maybe it was both? I can't remember! It came and went during chemo. Joystik would be best to answer that one, being in the middle of it. Are you going through it too Stormbaby?
soniat-d (153 ) 8:47 am, 3 Jul
4055. Hey Meridian ;o)
No worries! I do that with my girls too! What's with that? LOL!
soniat-d (153 ) 8:54 am, 3 Jul
4056. We slept in again this morning again!!!
Emilys still asleep so letting her sleep off whatever it was, checking her often. My iPAQ needed a complete reset which means all the appointments I made late last week are not in there or on my PC (hadn't syncronised for a few days) so spending this morning ringing up asking what times my appointments are LOL! Also calling DR Benji to try and shift to the Tuesday spot he offered me, hope its still open. Good luck with everything today Joystik, and Landylass, Meridian thinking of you this avo, Joshi hope the spots are fading, and to Ryan and everybody else I haven't mentioned by name I hope you all have a great day xoxoxox
soniat-d (153 ) 8:54 am, 3 Jul
Thanks for reading my journal. Sorry it made you cry.I did too just typing it re-living it. Onwards and upwards though, he is such a little trouper!! Best wishes to you if you have an appointment today. Joystik, hope your hair/head is feeling better. Sonia - Luck with getting that appointment changed. Shivers better go - joshi got blood tests in Gore. Gotta run. Love to you all xxoxoxoxxoxo Meridian - dont apologise, I felt quite famous. ;o)
paulaxx (77 ) 9:01 am, 3 Jul
good morning to you hope your tounge is better today.Are you still managing to eat ok?my hubby went right off food when on chemo and was very distressing to me watching the weight fall off him. we ended up getting the meal replacements for days when he couldnt stomach food.( hope you getting a wee feed of fresh blue cod now and again :)) You will be missing your lauren? yes we are heading to north island this week to catch up on family. bit nervous has hes had more seizures last week. but we keeping fingers crossed as he is getting excited now. hugs to you all.
kiwikaz3 (8 ) 9:03 am, 3 Jul
Just had to say this before I go. My heart was aching when I read your post about your darling girls. That must have been so hard! Thinking of you, hope Lydia and Emily are feeling better this morning. (((((HUGS)))))
paulaxx (77 ) 9:12 am, 3 Jul
4060. Hi Paula :o)
Emily woke up finally at 9.30 (!!!) and seems good, hopefully that'll do it, see how next hour goes... Lydia's fine this morning. I can't remember exactly what I said to her last night, something like "Don't worry about that, its not happening yet, I told you the lumps are shrinking, so thats good. I promise I'll tell you if things get worse, but you don't have to worry about that now." It was a bit more cuddly and explanatory than that, but that's the gist of it. Hope blood tests went OK - poor Joshi getting all these jabs too. How are his veins holding out?
soniat-d (153 ) 9:50 am, 3 Jul
4061. Morning all. Sonia that was a lovely way of......
easing poor little Lydia's mind. They are such awesome little girls and obviously very spontaneous with their thoughts and comments. Hope you can get your appointment moved too, then it will be tomorrow. Have a great day anyway. Lovely and sunny here now...
joystik (282 ) 10:08 am, 3 Jul
4062. Morning Paula and Joshi...hope all goes well with
the blood tests. Do just have to go to a Dr in Gore to have them done?? I think I can havemine done at the medical centre here in Otautau, but so far I have always been in town for other things so have just gone to the hospital. I have Oncology Clinic tomorrow so I suppose they will do bloods then too, ready for friday. Hope you all have an awesome day too. Is it lovely and sunny there too??
joystik (282 ) 10:11 am, 3 Jul
4063. Hi Stormbaby, I have only had one Chemo so far....
and have the next one either thursday or friday this week. I really only lost my appetite while I had the nausea for the first few days. But nothing much ever puts me off food anyway!! I dont think I have lost any weight since I started, thats for sure. Hope you have a good day too....
joystik (282 ) 10:14 am, 3 Jul
4064. Ta for that joystik
We are looking after Mum at the moment, she's just finished her chemo and radiation but has no sense of taste. She lost it at the first chemo. So everything tastes yuck. She has lost loads of weight and has a lot of pain from the chemo. I am sure once she gets her taste back things will look up. Just wanted to know if anyone had experienced something similar.
stormbaby (2267 ) 10:17 am, 3 Jul
4065. Hi kiwikaz, hope today is a god day for you and...
yours too. Yes, my tongue is better but I have 2 long cracks down the top of it now and the spots seem to have gone. Perhaps I better lay off the acidy stuff today!! ButI love tomatoes and oranges and tamarillos and kiwifruit!! Lots more hair coming out today, but not quite handfuls. Glad you are able to get away for a holiday while the kids are off school. Hope your hubby copes with it ok. Lauren always txt me lots of times a day when shes away, and sometimes it just says "love you Mummy" and thts really neat - shes nearly 15!! Have an awesome day kiwikaz....hugs to you all....
joystik (282 ) 10:18 am, 3 Jul
4066. Stormbaby, I had nothing except hot flushes from
the steroids, but only for a day or 2, and then this nausea which was much like morning sickness, except 24/7! The oncology nurse phoned me and when I told her, she said to take Maxolon 4 times a day to control it. I actually only took 1 maxolon and the nausea had gon within 10 minutes and never came back. Apart from that i have only had a sore head, but thats because my hair is about to come out. Take care and hugs to your Mum too...
joystik (282 ) 10:22 am, 3 Jul
4067. Hi Global, I hope you have a better day today than
you have had over the weekend. Hows Cam today?? Hope he's much better. What about your Nan? How is she? Hope you have a nice day planned. Take care and hugs to you all....
joystik (282 ) 10:25 am, 3 Jul
4068. Good morning Boop, I suppose you will be on the..
road by now on your way to Canterbury. Be really careful wont you, the roads can be so dangerous. Have a great time over there. I will be thinking about you..Take care and Hugs to you too....
joystik (282 ) 10:26 am, 3 Jul
4069. Thanks joystik
she is certainly getting her full quota of hugs. I think the taste loss has to do with where the cancer is (oesophagus sp) so we will cross our fingers. She is much better now she takes her pain and nausea meds. If it was me I would be taking everything that was given to me I kid you not. I think our parents are a lot tougher than us, trouble is we expect them to be there forever. Hugs to you all.
stormbaby (2267 ) 10:27 am, 3 Jul
4070. Hi Bogeyi, what are you and your family up to
today?? Did Ryan has hospital appointments today?? Hope all goes well if he has. Are you venturing off anywhere for the holidays?? I do miss Lauren when shes away,but she always keeps in touch by txt pretty often, so thats pretty nice too. Have an awesome day guys and hugs to you all....
joystik (282 ) 10:29 am, 3 Jul
4071. Thats probably true stormbaby.....mine is breast
cancer and my chemo is FEC, dont know if that means anything to you. I must admit, I wasn't too good at taking the meds either, because I kept thinking, this isn't too bad, so I'll not take anything just in case it gets worse!! But Oncology nurse said, No dont put up with anything like that, cos there is medication for most of the side effects, so you may as well use it. I agree with that now. Better have a shower and get dressed. The routine changes so quickly in the school holidays!! Take care...
joystik (282 ) 10:32 am, 3 Jul
4072. morning joystik
no hospital today we go back thurs, gorgeous day today not sure what we are up today....got all duvets airing out done vacuuming now sitting in the sun.
bogeyi (482 ) 10:38 am, 3 Jul
4073. Bogeyi, you're way more organised than me then...
I'm still in my jamas...but I must get going and do something. Might wash the windows out side seeing as its not frosty for a few days. We are supposed to have heavy rain today and snow to 200m again. Didnt get it last time and doesn't look like we will this time either..
joystik (282 ) 10:45 am, 3 Jul
4074. Just bumping this back to the top before I go for
a bike ride. Its such a nice day, I hope you are all out enjoying it too...
joystik (282 ) 1:20 pm, 3 Jul
4075. Hi everyone :o)
Em seems better today - still the odd tanty unfortunately. We had a fun morning - I took the girls up the Sky Tower for the first time which they thought was great and there was free face painting up there (they did an impressive job :o) Then took them in to Brent's work (nearby) so he could see their painted faces (and they, him ;o). Before that we popped into the hospital to try and catch Dr Benjamin as messages not returned. Missed him sadly but showed off my girls to the radiation team and they even took the girls in to show them the machine I was zapped under. Lydia was a bit taken aback by it! They liked the spiral stairs and indoor garden and made me walk through it with them - very cute :o) Anyway, only got playroon tidied last night so better go get a bit more done. School Holidays - arrrgh the mess!!
soniat-d (153 ) 2:10 pm, 3 Jul
4076. OK managed to get through to right person for
Dr Benjamin - rescheduled to Tuesday at 6pm. I'm sure I won't forget it after what happened on Saturday, but if anyone feels like reminding me on here - cool :o) It was majorly foggy this morning here, fog still hanging in places at 10.45am! Cleared to beaut day (hence Sky Tower) but now its a bit grey and gloomy. OK off to sort things - have a nice day all :o)
soniat-d (153 ) 2:17 pm, 3 Jul
4077. YES IT DOES SUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
just walked outta Haematology/c***** ward (dont like the word) to be told that our worst fears are a reality yeah WHATEVER! - not even gonna hear that! meet a lovely guy in there next to my partner who had the same thing my heart goes out to you Gav! just know that we will find the answer mate! *rant over*
phredyme (167 ) 3:19 pm, 3 Jul
4078. That's no good phredyme
What was confirmed - can we ask? It sux when you hear it but there is lots the docs can do - its not automatically a death sentence ;o) Rant all you like - we all do in here from time to time (((((hugs)))))
soniat-d (153 ) 3:30 pm, 3 Jul
4079. Hi Sonia, sounds like you've had a good day......
your weather sounds much like ours here. We started off foggy too and then have had a fab day, and warm too...it got to 19.1 deg, but now it is clouding up quite quickly. I managed to get my bike ride in and stopped at the supermarket and got some lovely steak for tea, and heaps of green vegies. I'll get these bloods right yet!! It is supposd to snow tonight to 200m so thats not on the ground here, but at the moment I would be very doubtful that it will even happen. Hey, dont forget your appointment at 6pm Tuesday will you!!............
joystik (282 ) 3:31 pm, 3 Jul
4080. Sorry phredyme to hear you got bad news too.....
That C word is awful when you hear it in relation to your self. I will never forget when I was told either, it was like being smacked in the face with something really solid! And yet, I was actually expecting the diagnosis I got. Its not all bad news though. There are lots of treatments now. Hugs to you....
joystik (282 ) 3:34 pm, 3 Jul
4081. phredyme sorry you had bad news today.
well i got a ph call from radiation at about 9.30, Mrs Godfrey just ringing to confirm you received your appointment for tomorrow....ar NO....I didn't think so....bugger bugger bugger they had made it for 9.30am my Mum had booked tickets at IMAX for the kids to see superman. I know this is important but so was my kids day out so the lovely lady changed it to 2.30pm. Bloody hospitals dont know why they dont just ring the appointments through....
bogeyi (482 ) 4:54 pm, 3 Jul
4082. me again
sonia sounds like you and the girld had fun, such a cold gloomy day this arvo. Joystik how was that bike ride? Paula and josh how are you guys today? I took hubby out today as he wants a new TV well spotted a 73" one he really likes but might have to settle for the 50" (poor baby) boy these new tvs are woth a small fortune, if only i knew someone in this business..lol
bogeyi (482 ) 4:57 pm, 3 Jul
4083. Hi bogeyi
Brent's on the hunt for a new TV too - wants a 42" - sounds like he's selling himself short LOL We can't fit a bigger one in the space! The one he wants isn't available here yet, so patiently waiting for it to arrive! Girls a bit of a trial this afternoon again. #sigh# back to them...
soniat-d (153 ) 5:15 pm, 3 Jul
4084. sonia 72" would of been a squeeze
but 50" ok, we have a projector as well but it needed upgrading so we thought we would get a new one and watch TV through it, but sadly our lounge is north facing and we get heaps of sun so would be no good during the day, and in summer we dont close curtains (great having no close neighbours) out of curosity whats brent after, thought i will ask in case im missing out on something super de dooper...got to keep up with the joneses..lol
bogeyi (482 ) 5:34 pm, 3 Jul
4085. Hi Sonia, bogeyi, paula, joystick etc etc ...
... and everyone else. I can officially celebrate. Seems I put myself through the wringer for nothing. The doctor who did the ultrasound is happy with how it all looks, and attibutes the lumpiness to scar tissue from the reconstruction. I'm not sure whether I would have had a reconstruction if I was faced with this now - knowing what I know.
meridian1 (294 ) 5:51 pm, 3 Jul
4086. Yay Meridian :o)
Thats so awesome :o) Just go for very regular ultrasounds/mammograms to be on the safe side. Each year clear your odds of recurrance drop, I'm pretty sure. Congratulations! Hope you're celebrating ;o)
soniat-d (153 ) 5:57 pm, 3 Jul
4087. Hi Sonia and everyone
Just wanted to pop in and say Hi to all you brave ladies and children in this thread. I posted early on the thread about my friend well after her year long chaemo and bone marrow etc we have just been told it that she has 3 to 6 months they cant do anymore. I havent yet been to see her as I am at a loss as what to say to her as she has looked so well lately. Anyway dont want to put a damper on you all youre all so brave and I read daily and pray for you all. Patra
patra (2141 ) 5:59 pm, 3 Jul
4088. Ummm bogeyi
Its something like this one http://www.consumer.philips.com/consumer/catalog/catalog.jsp?fhquery=fh_secondid%3D42pf9830_69_ au_consumer%26fh_location%3D%2F%2Fconsumer%2Fen_AU%2Fcategories%3Ccatalog_au_consumer%2Fcategor ies%3Ctv_gr_au_consumer%2Ffh_att_tvscreensize%253DFH_TV_TVSIZE_LARGE%26&productId=42PF9830_69_A U_CONSUMER&activeCategory=TV_GR_AU_CONSUMER&fredhopperpage=detail.jsp&language=en&country=AU&ca talogType=CONSUMER&proxybuster=B2U0C2P0JWHDFJ0RMRCSHQFHKFSESI5P but I hope it not that actual one as its not a looker IMO! But this is the technology he's after - LCD with Pixel Plus 2 HD and Ambilight 2. Also the integrated speakers. Boys and their toys eh?!
soniat-d (153 ) 5:59 pm, 3 Jul
4089. I hope everyone has had a
wonderful day! I have a gorgeous little story. Lennon (my son) was watching a Lilo and Stitch movie this afternoon while I was pottering around. I heard a wee sob and turned around to see him heading to me for a cuddle in floods of tears. I looked at the TV and realised what was up. In the movie, Stitch had died, and Lilo was cradling him crying. My sensitive wee man's heart was breaking! I just hugged Lenny and said 'oh no, did Stitch die?' Being a cartoon, Stitch came back to life (which made Lenny feel much better). I told him that it is so good that he can show his feelings like that, and that it's okay to get upset - it shows me what a caring little boy he is. He is sooooooo adorable, and I'm so very proud of him (and his sister)!
meridian1 (294 ) 6:07 pm, 3 Jul
4090. OK that link doesn't work
THis is the actual one - happier with the look of this one! http://www.cheapelectricals.co.uk/acatalog/Philips_cineos_42PF9831d_42pf9831_42pf9831_42pf.html
soniat-d (153 ) 6:09 pm, 3 Jul
Go see your friend. You don't have to say anything, just be there. I am soooooo sorry!
meridian1 (294 ) 6:13 pm, 3 Jul
4092. Thanks Sonia!
I am so relieved! I wont be celebrating as such tonight - but I might just have a glass of wine ;-)
meridian1 (294 ) 6:19 pm, 3 Jul
4093. Hey Sonia hows it going?
I've been away and have just caught up again on your blog.Glad you could change your appointment so the nanny could mind the kids, it would have been hard otherwise.Anyhow just letting you know I'm thinking of you ((hugs)) Wendy
winnie15 (107 ) 6:22 pm, 3 Jul
4094. Whoops Patra I missed your post sorry
I had the same thing back when I was 21 - found out my varsity friend was in his last months from leukemia (he'd never told us he had it, all through varsity - believe it or not!) Anyway I plucked up the courage (finally) and went, and at the time I hadn't a clue what to say (so said virtually nothing, and was too scared to ask what he was feeling), but even though it was a struggle, I'm sooooooooo glad I went! Really, really glad! Anyway, now That I'm in this situation, thinking ahead to being the one in that hospital bed, now that the possibility is so more real (but by no means sealed), hmmm.... I'd say (1) Just shake the fear and go! She'll really really appreciate it! It's worse being alone with no visitors, than having a visitor who doesn't know what to say... being there is everything
soniat-d (153 ) 6:42 pm, 3 Jul
(2) Ask her if there's anything you can do for her, any research she'd like you to do for her (the docs aren't always right!) on alternative meds etc; any loose ends you can help her tie up etc. And just let her talk, and feed off her state of mind - is she still fighting, or resigned to the fate her docs have laid out for her? Remember we all die sometime, there is some benefit in knowing when that may be, being able to prepare. Any one of us my be involved in an accident on the way to the hospital etc etc with no warning at all. We're blessed for each day that we DO have. Sorry I'm rambling now aren't I - should I even post this???? Just my thoughts, what do others think?
soniat-d (153 ) 6:42 pm, 3 Jul
4096. Hi Winnie - thanks :o)
Sorry gotta go finish dinner! More later ;o)
soniat-d (153 ) 6:43 pm, 3 Jul
bogeyi (482 ) 7:17 pm, 3 Jul
4098. Hello everyone
Wow this place has been busy again. I have been in town all day. Gore that is. Josh had a finger prick blood test today, they didnt have a kit to do the bloods through his port, and he doesnt need to go through the trauma of a arm(vein) one. These things are just too much some days, so that was good. Had to milk it out of his thumb though.Waiting for test results still.So Chris got a new exhaust thingy ma jiggy put on his baby (Holden SS V8) and now he is talking about looking for a wee run about for me.Will look in Invercargill on Wednesday. MMM TV shopping I wont mention that your men are looking or I might not get my shopping basket. lol. Hope you have had a nice day.
paulaxx (77 ) 7:26 pm, 3 Jul
That probably answers your questions about his veins. Depends how well he is too, sometimes when they try to take blood they cant! Ports are great for that! Joystik - all the best for tomorrow. Hope it goes well, then Friday you can get your port sorted. Hey Bogey - How are you all today? Hope Ryan is good. Sorry about tomorrow for you!!Thats so not fair. Good luck for that though.
paulaxx (77 ) 7:29 pm, 3 Jul
4101. Hi Paula
hows josh's rash??
bogeyi (482 ) 7:29 pm, 3 Jul
4102. Hi Bogey
It looks a little less red. Some more funny spots are appearing?? I dunno, just one of those things, I hope. He does seem a little better. But being around other children today has really taken it out of him. He finds it hard to socialise. Poor lamb
paulaxx (77 ) 7:38 pm, 3 Jul
4103. Hi Paula, glad the blood testing went ok. When
do you get the results?? Tomorrow sometime?? I have Oncology clinic with Dr Perez from Dunedin at Kew tomorrow morning at 10.30, so they will do bloods then ready for thursday now. Peter Boon the IV nurse (do you know him?? He's lovely) phoned about 4.30 to say that they had found a wee space for me on Wednesday morning now at 8.30!! So I will have to be nil by mouth from midnight, get up and shower, no hair products, no make up and no jewellery, and be there to be first in. That will only happen if nothing more acute arrives up in the meantime. So t doesn't pay to plan to far in advance does it cos things change in a minute...
joystik (282 ) 8:01 pm, 3 Jul
4104. Good to hear your GOOD news meridian....
helped to make my day extra happy. I like hearing those happy endings on here. I was thinking about you and wondering how you were getting on. Hugs to you..
joystik (282 ) 8:04 pm, 3 Jul
4105. Oh Meridian!?! Why aren't you celebrating?!
You've received excellent news - that could have been terrible news. I hope you celebrate SOON! :o)
soniat-d (153 ) 8:19 pm, 3 Jul
4106. Hya Joystik ;o)
So, it's started eh?! I don't think mine ever fell out in clumps, just lots of strands of hair. But then I'm thinking back like 8 months or something - think I've forgotten heaps already! Anyway, wishing you well with the blood tests etc. Hope all goes as planned! ;o)
soniat-d (153 ) 8:21 pm, 3 Jul
Wednesday - Joshi will be in outpatients having his wee op too. Only if bloods ok of course. So we are both waiting. Maybe if you are up to it, we may meet??? We always end up back in the paediatric ward.
paulaxx (77 ) 8:24 pm, 3 Jul
4108. Gee Sonia and Bogeyi, your men are really into
these flash large tele's aye?? Only 3 people live in out house and we have got 4 tele's but only little ones!! Some of those big tv's are about 8k arent they?? I dont really know anything about them whether its a plasma or an LCD. Its like Japanese to me. Glad you've had a good day up there. The weather here was fab but now it is raining like was promised..
joystik (282 ) 8:24 pm, 3 Jul
4109. I know Sonia
It IS great news! I feel a little foolish for worrying so much - and I did down-play my feelings to everyone around me (which is why you guys have been so special to me). I am celebrating internally - if that makes sense.
meridian1 (294 ) 8:25 pm, 3 Jul
4110. Hi Paula
Yes I can imagine his veins are scarred to the max! Best tip is to always drink a good amount of water beforehand, really helps speed up the extraction, once they've gotten the needle in ;o) Yikes out the finger?! Eeeek! Poor kid, what a trouper. Give him a big hug from me? xoxoxox
soniat-d (153 ) 8:26 pm, 3 Jul
4111. Brent's into ALL the boys toys Joystick
Work hard play hard is the motto round here ;o) I'm not sure how much it is, he can get it for a trade price, which will help a bit. Its his 40th pressie, though whether it'll be in the country by his birthday is another question!?!
soniat-d (153 ) 8:29 pm, 3 Jul
4112. Its perfectly normal to worry like that Meridian
I just wish I got news like that too! Me I celebrate that the 12 cancerous lumps in me have shrunk a bit - gotta celebrate any good news LOL
soniat-d (153 ) 8:31 pm, 3 Jul
4113. Thanks Sonia
I will go and give him a hug right now. Tell him its from you, he loves cuddles. He told me today hes never going to leave home. How cute!
paulaxx (77 ) 8:32 pm, 3 Jul
4114. Thanks Joystick
I hope your bloods go well tomorrow so that things can go ahead as planned on Thursday. I'm sure they will - I will cross my fingers for you. Big hugs back to you!!!
meridian1 (294 ) 8:32 pm, 3 Jul
4115. Awww Paula Lydia says that too ;o)
Should record it so we can play it back to her when she's a teenager LOL
soniat-d (153 ) 8:34 pm, 3 Jul
4116. Ok Sonia
Done and he said thank you sooooooooooooooooooooooooooooooooooooo much - xo
paulaxx (77 ) 8:34 pm, 3 Jul
4117. Oh BTW did I mention I'm starting
scrapbooking classes next week? I always thought scrapbooking was a supreme waste of time LOL but have decided I'm going to make a book for each of the girls, for them to keep when they're older. Quite excited about it :o) I love doing arty stuff so think I'll enjoy this new project ;o)
soniat-d (153 ) 8:36 pm, 3 Jul
4118. That's cool Paula :o)
Glad he liked it! Feeling all warm and fuzzy here now :o) xoxoxox
soniat-d (153 ) 8:37 pm, 3 Jul
I wish you had got good news as well - you of all people deserve good news! I am pleased that they are shrinking. WHEN you have beat this horrible monster, I reakon you'd make a wonderful Cancer Society counsellor. Hows Em been today? I hope she's feeling better.
meridian1 (294 ) 8:37 pm, 3 Jul
4120. Shux Meridian - thanks :o)
Got to put the girls down now - Em's OK now, think he body's been out of kilta - hopefully a good night tonight will put her back to normal ;o)
soniat-d (153 ) 8:46 pm, 3 Jul
4121. Well Paula, so long as the bloods are ok, we
could be seeing you on wednesday...how exciting!! I did a bit of asking around the other day when I was there, about where I might find Josh if he were there. What time does he go to Theatre? Do you have a time yet?? I'm first up at 9am or soon after! So I could be ready to go by lunchtime. They are going to leave a needle in for the chemo on thursday. They always get blood out easily from my arm but other places are much more challenging! Especially the feet!!!
joystik (282 ) 8:46 pm, 3 Jul
4122. Sonia my hair is coming out lots of strands at
at time. If I run my hand through my hair I can get about 10 or 20 every time now. Funny thing though, at night my head is really sore but in the morning feels quite normal again.
joystik (282 ) 8:48 pm, 3 Jul
4123. Hey Paula and Sonia, Lauren is nearly 15 and she
told us a wee while ago that she loves us so much shes going to live at home until shes 29. A few days later she revised the age up to 40. I told her she would be very handy at feeding the cat when we go off cruising, but she thought that was most unfair and she would love to be coming too. They are so funny. With her, its not really wanting to move out of her wee comfort zone.
joystik (282 ) 8:51 pm, 3 Jul
4124. joystik the 72" was $6300 he was
saying to the kids this would be great wont it, I said to hubby would also buy me a nice newer car, by now kids are saying buy it..there was a man near by cracking up when i mentioned my car and how i couldnt drive the tv, and when the kids were on dads side i kindly reminded them who cooks in the house..lol
bogeyi (482 ) 8:51 pm, 3 Jul
4125. Oh yes men and their toys!! Thats why we have an
8m Cabin boat and a Ford F250 4wd up out drive I suppose!! Oh and I forgot a 10.5m Bus too, all on a 1/4 acre section. When I get my Real Estate ticket, I will get a smaller vehicle for me to run about it. I dont really need to go for groceries in a V8 pickup do I??? I will probably get a 4WD though but a smaller one...
joystik (282 ) 8:57 pm, 3 Jul
Classic! LOL. Joystik - He usually oges up to surgery around 1pm. I think we might be there about 11ish that how it usually goes. Now im excited too. Fingers crossed eh?
paulaxx (77 ) 8:58 pm, 3 Jul
4127. Bogeyi that would be right, a new BIG tv would
be far more appealing than a new car for Mummy. I hardly watch tv at all. Only really watch Coronation Street seriously and then usually as the music starts, the phone rings, so I often miss that too. Thats a pretty good price for a TV that size isnt it? Plasma or LCD??
joystik (282 ) 8:59 pm, 3 Jul
4128. crickey im breeding a right one then
ryan is so into his gadgets its not funny, hes gets excited and runs to the tv when noel leemings or harvey norman are advertising saying ooh oooohhhhh i need one of those...lol
bogeyi (482 ) 9:00 pm, 3 Jul
As soon as I know something I will post on here. Whats happening for Wednesday. I will email you my cell number - just in case xo
paulaxx (77 ) 9:00 pm, 3 Jul
4130. Paula, I will know tomorrow afternoon if the blood
tests are favourable, and will post a message then. I have to be in Day Surgery up stairs at 8.30 so I will have to get up early. We try to allow an hour to get there, but it only takes about 40 minutes, unless you get stuck behind slow trucks etc.
joystik (282 ) 9:03 pm, 3 Jul
4131. Ok Paula, I will email you my cell # as well...
then we can get this sorted properly. How long is Josh usually in for to have his proceedure done??
joystik (282 ) 9:05 pm, 3 Jul
4132. Thats so funny
Tonight Josh wanted to talk to me while I was in the bath. I just wanted to relax and think about my new car (not new new) and hes sitting there saying what do you want to talk about - I said well my new car, hope its got a cd player in it, he rolls his eyes and says can we talk about something other than your car please.... Well, really then we got on to his new hotwheel. Ha ha ha arent ehy priceless
paulaxx (77 ) 9:05 pm, 3 Jul
We usually get to go home around 3ish depends how soon he comes out of anaesthetic. Thanks
paulaxx (77 ) 9:06 pm, 3 Jul
4134. Thanks Sonia Meridian
Thanks for the advise just dont want to say anything to make it worse, I told her step mum about you guys and suggested we get her to check this thread out as you have researched and looked into lots on here. I have spent time with her in hospital when she was down during treatments etc but this girl well what can I say shes a fighter but from what I gather has gone into organisation mode which is as I expected as shes a single mum and wants to sort everything while she can. I will go see her as often as I can just am worried about what I can do thanks for your help as I have said you guys are great take care all Patra
patra (2141 ) 9:11 pm, 3 Jul
4135. Big hugs to you Patra
meridian1 (294 ) 9:31 pm, 3 Jul
4136. Nite Nite everyone.........
hope you all have restfull sleep and sweet dreams. See you all again tomorrow....hugs for everyone.....
joystik (282 ) 10:44 pm, 3 Jul
4137. Good night Joystik
Goodnight everyone ;o)
soniat-d (153 ) 11:02 pm, 3 Jul
I think your posts 4094 & 4095 are right on the button when offering advice to Petra..I have seen people literally creeping indoors and peeping around the door while paying me a visit ( following my brush with leukaemia ) almost to scared to look ... But the sight was too much for my sense of humour and I had to reassure them I was alive and ...well... getting better!!
farmerlloyd (23 ) 11:05 pm, 3 Jul
4139. Sonia cont.
The thoughts you express about the chances of anyone suffering an untimely accidental death are bring home the rather tenuous hold we all have on life ... and as you say... every day we waken up to find ourselves enjoying another day above ground ... is enough reason to give thanks ... and I do not mind saying that I do this every day now ...Stay stong everyone ...Lloyd
farmerlloyd (23 ) 11:12 pm, 3 Jul
4140. Wow. What a lot has
gone on since I last looked!! I'm just home from work. Been a huge weekend there but now have 3 days off. Will try and catch up on all your postings tomorrow. What a shame I didn't know that Boop was coming over to Chch. I would have loved to catch with her. Joystik you don't have a contact number for her by any chance? And good luck for tomorrow. Hope everything goes to plan for you this week.Sonia, hope your girls are feeling better now. Meridian, so happy for you. Hope you have had at least on glass of wine by now!! Think I might have one myself!!
maewest (75 ) 11:22 pm, 3 Jul
4141. How are those lovely boys
Paula and Bogey? They are always in my thoughts.Big (((HUGS))) from me. Good night everyone. I will catch up with you all tomorrow. Nitey nite XXX
maewest (75 ) 11:24 pm, 3 Jul
4142. sleep tight
everyone and god bless you all XXXX
patra (2141 ) 12:40 am, 4 Jul
4143. good morning everyone
nice to see you maewest, hope you have a few relaxing days off. Ryans good we have our radiation appointment today where they measure and calculate everything. Tyler came up at 2am with a really bad cough, not what we need this close to transplant but seems better this morning.
bogeyi (482 ) 8:37 am, 4 Jul
toysky (7 ) 8:43 am, 4 Jul
4145. Hi bogeyi ;o)
Tell Ryan I wish him well with his markup this morning - we were just in there yesterday (I showed off my girls to the staff while trying to hunt down Dr Benjamin). The staff are lovely. Hope it all goes well xoxoxo Emily was up during night complaining of sore ear so off to docs this morning - must get a move on. Morning all ;o)
soniat-d (153 ) 8:44 am, 4 Jul
Hey Bogey Bumma about Tyler coughing lets hope its nothing!!!!! B****y coughs! I am so tired. Josh coughed and coughed finally got to sleep around 11.30, woke up coughing again. I am wondering if they will do a GA with a cough like that?? Hope the radiation goes ok, will be thinking of you xo
paulaxx (77 ) 8:45 am, 4 Jul
Cos I wanted too.
paulaxx (77 ) 11:20 am, 4 Jul
Thanks for thinking of us. Enjoy your days off. Hope the weather is nice for you (((((hugs)))))
paulaxx (77 ) 11:22 am, 4 Jul
4149. hiya paula
hows josh now??whats weather like?
bogeyi (482 ) 11:24 am, 4 Jul
4150. HI Bogey
Was just thinking about you. Weather off and on - snowed briefly this morning. Josh seems pretty happy. All on for hospital tomorrow. Hows Ryan are you back? Howd it go???
paulaxx (77 ) 11:28 am, 4 Jul
4151. Oh Sonia
Just popping in to say ... 6 Oclock tonight - all the best. We will be thinking of you xo
paulaxx (77 ) 11:29 am, 4 Jul
4152. appointment not till 2.30pm
kids went with nana at 9.30 to see superman so i have had some quiet time..
bogeyi (482 ) 11:38 am, 4 Jul
4153. Oh thats
good they got to go to the movies. Wow, quiet time. Are you enjoying it???? Or is that a silly question.
paulaxx (77 ) 11:47 am, 4 Jul
4154. loving it
my lounge floor has been clear of toys ans drawing stuff for over 2 hrs now..lol
bogeyi (482 ) 11:49 am, 4 Jul
Enjoy your time! Good luck with the appointment. Be thinking of ya
paulaxx (77 ) 12:07 pm, 4 Jul
4156. Hi girls
Hope all goes well with Ryans radiation today bogeyi, and Joshi's op tomorrow Paula. Oh, don't forget your appointment this evening Sonia - Good luck with that as well. Hope your bloods were okay for tomorrow Joystick! Thanks for your kind words Maewest. I am going to take a break from the MB, but I will be lurking, and checking those websites out to see how you all are. HUGE BIG HUGS AND MEGA THANKS TO YOU ALL!!!!!! XXXXXXXXXX Bless you all :-)
meridian1 (294 ) 12:19 pm, 4 Jul
4157. Hi everyone, thanks for the reminders :o)
Don't think I'll forget now - have the nanny booked to cover me for the appointment ;o) Have a great vacation from the MB meridian LOL I always try to do that but never succeed! So the prospect on a new car in exciting Paula, much more useful than a TV IMO ;o) Good luck to Joshi, Ryan and Briyanna. Hugs to all you lovely ladies. Brents away agin now till midnight Thursday so I'll get in here when I can. Emily has an ear infection (as I deduced last night) when shes sick she's stroppy as, so if you don't hear from me I'll be cuddling her! Have a nice afternoon everyone :o)
soniat-d (153 ) 12:30 pm, 4 Jul
Thanks hun.All the best then, Poor Emily give her a cuddle from us too. Take care hear from you when you can ;o)
paulaxx (77 ) 12:36 pm, 4 Jul
4159. Thanks Paula - gave her big cuddles
She's out-for-the-count already. I'm feeling a bit tired again - this cold isn't major but sucks my energy (also up half night with Em didn't help!) so off for a lie down, then to get things sorted. Not a great day here - overcast and windy with brief showers every now and again.
soniat-d (153 ) 1:43 pm, 4 Jul
4160. Hi Paula...well its all go for me too....YAY!!
At last I am going to get this port in and then will have my secone chemo through the port in the afternoon. They are going to leave a needle in while I am under general for them to use in Oncology. So some where during the day i WILL get to see you and Josh...Can't wait actually, I'm really looking forward to it. I have to be at Day Surgery before 8.30, and will go to theatre around 9.00 - 9.15. The Op is only about 45 minutes, then 1/2 hour recovery then back to Day Surgery ward. I think Chemo transfusion is early afternoon at Oncology downstairs. I will have my phone so willlet you know.
joystik (282 ) 4:15 pm, 4 Jul
4161. Sonia,poor wee Emily. Hope she will feel better
real soon. I had lots of earache when I was a child,and it probably accounts for the slight deafness I have in one ear now. We lived way out in the country, and so never went to the Dr unless we were half dead, and earache wasn't considered half dead!! Mum used to give us a disprin in a teaspoon of raspberry jam (yummy home made) and I think that was basicly the cure all for anything that was wrong. Hey dont forget your appointment at 6pm will you...I see you have had a few reminders today.
joystik (282 ) 4:19 pm, 4 Jul
4162. Hi meridian, thanks for your kind wishes for me...
My bloods were really good today. The neutraphils were up to 2.9 so its all go for the Port Operation tomorrow, and then the chemo in the afternoon. Thats number 2 then there are only 4 left after that. I will miss seeing you on the message board, but will think of you just the same. Hope all continues to go well for you and take care, OK? Hugs to you too.....
joystik (282 ) 4:22 pm, 4 Jul
4163. Hi bogeyi, hope all has gone well with the ....
mark up today. Nice you had a morning to your self this morning. Thats nice sometimes isn't it. I know even I enjoy it and I only have one child so it must be even better when there are more.. The Oncologist was rather astonded at how well I had coped with the chemo. He said he had expected that it would have 'flattened me' to a certain extent and thought he would be dropping the doseage this time, but instead he is keeping it at the same level, and will see me again in 3 weeks time. He has ordered a cardiac ultrasound because the Epirubicin can damage the heart muscle, and they need to see if there has been a change in that function. So overall her was really pleased with me. Hair is falling out quite a lot now. He reckoned 2 days after the next chemo it will be all gone. He said he was really sorry about that side of it. Rather nice of him to say so I thought....
joystik (282 ) 4:29 pm, 4 Jul
4164. Hi Maewest, just picked up your message now....
I only have a home number for Boop and her address but not a mobile number. I think she was going to be over in Canterbury a few days, so if I can find it out I will get it too you somehow. You are so busy aren't you. Taxi's must be in great demand. Do you drive round the city or just anywhere someone wants to go?? You on days off again now?? Make sure you have a good rest if you are. My Oncology report was excellent today and so were the bloods, so its all go for the Op tomorrow now, and then the chemo straight after. Take care and hugs to you.....
joystik (282 ) 4:34 pm, 4 Jul
4165. omg im sitting here looking at a huge box with
the 50" tv in it, hubbys almost drooling. Well ryans mark up went well, so many people in the waiting room (you just dont realise), its all a bit daunting really those machines are so big for such a wee fella.
bogeyi (482 ) 4:53 pm, 4 Jul
4166. Hi everyone, OK no time to read your posts now
sorry but just letting you know yes! I remembered I'm off there now - fingers crossed it goes OK ;o) Thanks for the reminders :o) Feel like a ditz needing reminders LOL!
soniat-d (153 ) 5:11 pm, 4 Jul
4167. good luck sonia
sending good vibes your way
bogeyi (482 ) 5:13 pm, 4 Jul
4168. Joystik what a shame I
I didn't know Boop was coming over here. Would love to meet her. So pleased everything went well for you today. Big day for you tomorrow. One more step nearer the end of treatments!!! I don't dirve taxis any more. I did that for 8 years...gave it up about 18 months ago. I now supervise in the dispatch room. Have to make sure everything is running smoothly. A big job, but I enjoy it. I couldn't have continued driving taxis while undergoing all the treatments, but I was able to continue doing what I do now. It was good for the brain. Stopped it turning to mush altogether!!
maewest (75 ) 5:20 pm, 4 Jul
4169. Bogey those machines
are daunting even for a big person. I'm pleased it all went ok today. When do Ryan's treatments start? (Sorry you have probably posted that already).A big for you and Joshi tomorrow Paula.My thoughts will be with you both. I'm too late to remind Sonia to go to her appointment. She is probably on her way there now. Had visitors all afternoon. Enjoying a bit of peace now until the next lot arrive tonight.Think I will be in bed fairly early though. Bed is looking good!
maewest (75 ) 5:25 pm, 4 Jul
4170. Oh Sonia, I was meanig to say Good Luck for
your meeting tonight. I will be thinking of you and hope it all goes reall well for you. By now you will be left home and wont get his til after, but I'll be there with you...hugs to you....
joystik (282 ) 5:30 pm, 4 Jul
4171. Hi Bogey
Poor Ryan sounds all a bit scary! Well done though! How did it all go?
paulaxx (77 ) 5:49 pm, 4 Jul
4172. Joystik - YAY
Cant wait. This is the happiest Ive been about going to hospital with Josh yet. I will have my phone on me too. Depending on how your feeling I dont want to bother you if your still coming back to after the anaesthetic. We will be in paediatrics dept, due there at 11.30. Theatre is not till 1pm so we will be cruising in his room for the time in between. We will keep in touch. YAY.
paulaxx (77 ) 5:52 pm, 4 Jul
Thinking of you .... sending positive vibes from here too xo
paulaxx (77 ) 5:53 pm, 4 Jul
4174. Thanks Maewest
Hope you are enjoying your days off work.
paulaxx (77 ) 6:12 pm, 4 Jul
So pleased things are good with you. Thats awesome~~! Thanks to you too for thinking of Josh tomorrow, he is not phased by this in the least had that many of these now. I still hate it when he has this type of chemo. After his stroke we always notice such a huge change in him, its the chemo bathing the brain.:0/ Will let everyone know how it goes tomorrow. Hope he gets to sleep earlier tonight. Take care and thanks again
paulaxx (77 ) 6:16 pm, 4 Jul
4176. Hi all just a quick post again sorry
Thanks for the kind wishes. Went fine. Benji was very happy with the lumpy area, says all shrinking down well, reckons the one that looks like it has grown a bit had grown after the last CT and is shrinking. Hmmmm... we'll see! He is concerned about the little whatever-it-is that has appeared in my liver. Says that will determine next course of action, so have to wait the now 7 weeks. He said go ahead with Vitamin C infusions now - will help healing. Go on holiday etc. I said surely if my CA153 is only 19 then the liver thing can't be cancer? He said not necessarily! Some cancers don't show up at all on the CA153. Excellent - thanks for that :o/!!! Oh well, won't worry till there's definately something to worry about. Glad he's happy with the local recurrence area :o) OK gotta down some tea and collect my girls. Have a good evening all ;o)
soniat-d (153 ) 6:39 pm, 4 Jul
Sounds all pretty good then!! YAY for you! Now you can settle into your scrapbooking, planning your holiday etc. Thats great. Hope Emilys ears clear up soon. Cass is just like that too, if shes coming down with something gets a bit snakey - actually me too! Anyway, hope you are all ok. Enjoy your night. Im hoping for an early one I dont want Joystik to think Im doing my best panda impersonation. ;o) xo
paulaxx (77 ) 7:21 pm, 4 Jul
4178. sounds very postive today sonia...yahoo
Ryan will be going into hospital on the 24th July (to start preping for transplant) this is also the day he has radiation, he only has 1 dose will take about 30-40mins he can only have a 1/3 of the treatment that a leukemia patient would have. Nurse told me its completely different drugs this time and instead of the infusion happening on the 10th day it will be either day 5 or day 8.Now waiting paitently for the protocol.
bogeyi (482 ) 7:30 pm, 4 Jul
4179. Sonia, that all sounds a lot more positive ......
and much better news all round. Now you can focus more on other things for a while until, you have your scan in 7 weeks time, and see that thing on your liver has GONE.. That scrapbooking looks like so much fun, but I would want to buy all those little bits and pieces, I wouldn't be able to chose. Actually I'm not really in to arty crafty things like that, but Lauren is. And the holiday too, just reminded me I was supposed to pick up 2 forms to renew our passports and forgot again - DRAT! Tomorrow looks a bit busy so it miught have to be next week. Hope Emily is feeling lots better tonight. Hugs to all you girls.....
joystik (282 ) 8:03 pm, 4 Jul
That is the hard part the waiting - patiently... I just have to share this with you and anyone else that reads this and gets a giggle cos it was funny... Josh has a trundler bed which everynight I pull out, its become a routine, when he first got home from hosp it was like that cos he really couldnt walk properly, anyway tonight I went in to him, cos he coughing away and not feeling great. Then I somehow lose my balance trying to stay upright end up falling off the trundler bed backwards onto his desk and sit straight in his glass of water.Josh gave me a very good demo of how I looked. Must have made a bit of a noise as pup cam in to see what on earth it was and then saw me, cracking up over what Id just done & turned his back and laid down.It must have looked hilarious, Josh's version of events was priceless. LOL
paulaxx (77 ) 8:26 pm, 4 Jul
I will pick up passport docs for you on way to hospital tomorrow as we pass a place that I know has them cos I saw them last week. How many do you need?
paulaxx (77 ) 8:28 pm, 4 Jul
Maybe the fall did some damage. I see you need two. I will pick them up for you in the morning xoxo
paulaxx (77 ) 8:29 pm, 4 Jul
4183. that gave me a giggle paula glad your ok
I bet it made josh laugh, and just imagine at hospital tomorrow when he reanacts what his Mum did..lol
bogeyi (482 ) 8:46 pm, 4 Jul
4184. Thanks Paula, that would be lovely. I'm really...
looking forward to seeing you guys tomorrow. I have to be there soon after 8am, so I will have to get to bed soon or I will never be there on time. Hope you enjoyed your little trip!! Sounds hilarious! Hope Teddy was impressed with your gymnastics as well. I think the chemo is early afternoon, so I will cruise by the childrens area and check it out as soon as they let me out!! I will have my phone too.. Hugs all round guys.
joystik (282 ) 8:47 pm, 4 Jul
4185. Bogeyi, I might ask Josh what actually happened...
so I can hear his version of events!! Might be interesting from his point of view....
joystik (282 ) 8:48 pm, 4 Jul
4186. Bogeyi, thats a big programme that Ryan has to go
through for his transplant isnt it?? How long is he in hospital for about?? Is Tyler the donor again?? How long is he in for?? My heart really goes out to you guys and I will be thinking about you all the time, all of you....this makes my treatment look like something very minor. Dont forget ever, that we are all here for you will you. Love and hugs to you all....
joystik (282 ) 8:51 pm, 4 Jul
4187. I forgot to ask Bogeyi...hows the new TV going??
Are you all watching Coronation Street?? Bet its a big hit with the kids....
joystik (282 ) 8:53 pm, 4 Jul
4188. Hi Meawest, I got in touch with my friend in CHCH
who is also a friend of Boop's and she is going to tell Boop, if she sees her, that you would love to meet up with her. She hasn't seen her as yet, but theres still time. Hope you enjoy your days off. So you do the dispatching? That would be pretty technical at times wouldnt? Make you pretty conversant with the streets etc. That would keep your brain pretty alert. Better clean this hair up....what a blimmin mess it is falling out everywhere. Wouldnt be so bad if I kept my hands out of it!! Hugs to you maewest...take care..
joystik (282 ) 9:01 pm, 4 Jul
4189. Joystik Tv greats kids glued to it
joystik thanks for your thoughts all of you ladies are going through as much heart ache as ryan, yes tylers the donor.Last time we were in for 1 month and 2 days, he rocked through treatment, this time i have a feeling he is going to get really sick, the other boy that has FA has been in hospital for 11 months, so who knows i only hope its not to long.
bogeyi (482 ) 9:04 pm, 4 Jul
4190. Oh Bogeyi, that is a very long time isnt it??
Hopefully he will breeze through it without too much trouble. I'll have all my fingers crossed for him, and I just hope and pray that he has no problems. I guess he has to keep as well as possible in the meantime and Tyler too. What a lovely thing for a little brother to do for his big brother.
joystik (282 ) 9:19 pm, 4 Jul
4191. Hi Joystik ;o)
Good luck with your port op tomorrow - Landylass made it sound like a doddle which I find hard hard to believe but I've had other women tell me the same thing! So did you see Paula's nice offer to collect passport apps for you on the way in tomorrow? How many do you need? ;o)
soniat-d (153 ) 9:48 pm, 4 Jul
4192. Hi bogeyi ;o)
What are you up to tomorrow morning or Thursday or Friday? Would you like to meet up somewhere with the kids? Would be fun :o) I'm a slacker and haven't organised anything else as yet - gotta get organised! Sorry to hear that you think Ryan won't do well this time, we'll all send our positive vibes and hope for the best ;o)
soniat-d (153 ) 9:50 pm, 4 Jul
4193. To all you lovely ladies
Even though I'd probably walk past you in the street LOL you are officially my new best friends! ;o) Thanks for all the support and reminding me of my appointment etc - none of my other friends bothered too! (((((Group hug))))) :o)
soniat-d (153 ) 9:52 pm, 4 Jul
4194. LOL at Panda impersonation Paula :o)
Awww its cool that you and Joystik get to meet up again, I'm jealous! Looking forward to the impending opportunity to do the same ;o) Best wishes to Joshi for tomorrow, I hope he has a better night tonight xoxoxox Em's OK, gone down to sleep well, although asked for Pamol so we'll see what the night brings...
soniat-d (153 ) 9:55 pm, 4 Jul
4195. Hi Maewest :o)
Nice to "see" you again ;o) Looks like I'm here on my lonesome tonight LOL so goodnight everyone - sweet dreams :o)
soniat-d (153 ) 9:56 pm, 4 Jul
4196. hellllllllllllloooooooooooooooo anyone here
i have loaded some new pics on ryans site want to know if you guys can view them????
bogeyi (482 ) 10:27 pm, 4 Jul
4197. sonia love to meet up but this week is
pretty stretched, wed thurs hospital and meant to be going out fri..would love to meet you and your lovely girls may just take some juggling..
bogeyi (482 ) 10:30 pm, 4 Jul
4198. hi bogeyi, how are
im good thanks how about yourself.
bogeyi (482 ) 10:33 pm, 4 Jul
4199. as you can see i have gone completely
crazy but this is for......
bogeyi (482 ) 10:34 pm, 4 Jul
4200. paula,josh and joystik
good luck for tomorrow..
bogeyi (482 ) 10:34 pm, 4 Jul
sh0lly (45 ) 10:34 pm, 4 Jul
4202. sholly you jumped ahead of yourself
and good luck to me I have to take miss 10 to greenlane to be sedated to have her teeth done, she is so scared of docs,hospitals that she needs to be sedated, I think the fear comes from seeing what ryans been through.If you mention needles she almost faints.
bogeyi (482 ) 10:37 pm, 4 Jul
4203. I know
as soon as i pushed the blasted button I stuffed it. Hey and awesome thread. Totally inspiring. Makes you appreciate life.
sh0lly (45 ) 10:39 pm, 4 Jul
4204. Good morning ladies.....just off to Kew now
to have the Port put in. See you later.....
joystik (282 ) 7:09 am, 5 Jul
4205. all the best joystik
will be thinking of you, good luck josh will be thinking of you to, hiya paula.
bogeyi (482 ) 7:12 am, 5 Jul
4206. Hey Bogey
Glad you got a giggle. Im quite the acrobat. Good luck with the hospital today. Sorry cant remember your daughters name. I hope it goes ok. Cass had a bad dream at 3.15am she was beside me telling about the Higgly Town Hero with pointed teeth. Got her settled and do you think I could get back to sleep - NOOOOOO!!! So I do look like a freaky panda, oh well. Thanks so much for your thoughts as usual. Hope today is ok for you????? Running off to check Ryans photos. OMG that poor other boy? with FA. 11 months. Thats so long. I just found out another wee boy died this week of Leukaemia and chicken pox related complications he was so sick, he lost his eyesight. Anyway the photos ........... (((((hugs)))))
paulaxx (77 ) 7:38 am, 5 Jul
Gorgeous photos, your children are beautiful. Have a good day xo
paulaxx (77 ) 7:49 am, 5 Jul
4208. Morning Sonia
Im looking forward to meeting you too, we all are! Hope you have a nice day today, better run and find my concealer. Catch up later xo
paulaxx (77 ) 7:50 am, 5 Jul
Thinking of you today and sending love. Will be watching to see your report about your day.
dize5 (458 ) 8:30 am, 5 Jul
4210. Morning all :o)
Hi bogeyi, sorry can you post Ryan's website addy again - blowed if I can find it - trawled back to page 45 of this thread (!) and gave up LOL! Hey I realise how busy you are, the hols aren't over yet, it you see a window open up let me know ;o) Big hugs to Ryan for today and every day xoxox
soniat-d (153 ) 9:29 am, 5 Jul
4211. Hi Paula :o)
Sorry to hear Cassy had a bad night - Lydia has those too occasionally. Hope you get some recovery time somewhere today? Hugs to Joshi and Cassy, hope all goes well today xoxoxo Lydia and Emily both had a good night and are back to their normal selves this morning - yay here's hoping that continues! We got in late last night so all having a big shower together now. Good fun :o) Brent called me last night so that was nice ;o)
soniat-d (153 ) 9:32 am, 5 Jul
4212. Good luck for you today Joystik
Will be thinking of you and everyone else today. Sending positive vibes around the country ((((((hugs)))))) xoxoxoxoxoxoxo
soniat-d (153 ) 9:33 am, 5 Jul
4213. Oh, hi Sholly
thanks for your post. Yep, the monster certainly puts the beauty and luck of life into perspective. Thanks everyone for keeping this thread alive. Anyone know what the record longest thread is? Hope TM don't pull it - PLEASE don't TM!?!?!??! OK, off for our shower now... wishing you all a good day. I have my first Vit C infusion at 3 - no, I won't forget (touch wood) ;o)
soniat-d (153 ) 9:36 am, 5 Jul
4214. A question, ladies.
I have to wear a pressure sleeve on my arm and a pressure glove on my hand, whenever I take a plane flight, as I imagine does everyone who has lost lymph nodes. I always wear them when I go to Australia, but am doing a plane trip next month from Hamilton to Christchurch. Do you think I need to wear it then, for a shorter trip? The physiotherapist who fitted them, has retired. Any thoughts? (It is surprising how few of these sleeves I see on other people on planes, now that I am aware of them).
dize5 (458 ) 12:06 pm, 5 Jul
4215. hi sonia
bogeyi (482 ) 12:23 pm, 5 Jul
4216. Hi dize5
I wear mine on local flights - better safe than sorry ;o) I wear long sleeves and jeans to cover them so you wouldn't know ;o)
soniat-d (153 ) 1:14 pm, 5 Jul
4217. Thanks bogeyi ;o)
Added to favourites - will look later - Em's just started up - time for her nap.
soniat-d (153 ) 1:15 pm, 5 Jul
4218. bumping for joystik and josh
hope all is well.
bogeyi (482 ) 4:34 pm, 5 Jul
4219. Big bump from me too ;o)
Hope all is well Joystik and Paula (((((hugs))))). Had my first Vitamin C infusion this afternoon - am I mad going for this 2 days a week?! Doing Friday afternoon this week and from next week every Tues and Thurs at 10am. $75 a time.... apparently there is a guy in Gore, sounds like they're all over the country! OK back to my girls :o)
soniat-d (153 ) 5:39 pm, 5 Jul
4220. I'm home and just getting some dinner but will
post again soon..promise!! I met 4 of the most beautiful people in the world today.....truely....I cant wait to tell you after who it was...Just made my day sooo......special
joystik (282 ) 5:49 pm, 5 Jul
4221. Oh bythe way, i am so excited that I forgot to say
i'm just fine and dandyand have a port and have had Chemo number 2....YAY!!!!!!
joystik (282 ) 5:50 pm, 5 Jul
4222. Hi Joystik ;o)
Glad all is good - so I'm guessing the fabulous Riddle family :o) Anyone else?!
soniat-d (153 ) 5:53 pm, 5 Jul
4223. Hi all
I wanted to say that Joystik is all you have imagined and more. What a LADY and a very beautiful one at that. Her husband is soooo lovely too. It was such a thrill to get the text to say we are coming to see you now. Josh had, had one lot of chemo and was waiting to go in to theatre and in she walked. More beautiful in person. Heather - thank you, you are very, very special and I am so lucky that my family got to meet you and Kevin. Hope you have a lovely night.Picked up my car at 5.00pm, Josh had a chest x-ray before we left.Still coughing, chemo went well tho. Filled up the car with petrol. Teddy stood on the horn while I was paying, made the kids laugh then Josh christened my car with a sicky! oh well you get that poor boy. He is feeling better now. Better go will check in later. xoxoxo
paulaxx (77 ) 5:57 pm, 5 Jul
4224. Hi Sonia
Glad the girls are feeling better! Better go but be back later xoxo
paulaxx (77 ) 5:58 pm, 5 Jul
how does the infusion make you feel?. Have a friend who works in the chemist who wants me to try this but if its $150 a week then the scrooge in me is screaming!.
sunbeamnz (72 ) 6:12 pm, 5 Jul
Hi again..the Gore man you refer to, is a G.P. at the local medical centre ..my wife works at there but as a practice nurse for another of the many GP's who work there
farmerlloyd (23 ) 7:32 pm, 5 Jul
Wonderful to hear how your day went. Really great to think that your monster has just been given another kick in the guts!!! More details of your day when you have time, please.
dize5 (458 ) 7:38 pm, 5 Jul
4228. Hey Bogey
How was your day? At hospital with your little girl? Hope it all went ok. Thinking of you xo Love to all your family tonight
paulaxx (77 ) 7:54 pm, 5 Jul
4229. Hi everyone, Yes Sonia you guessed right -........
That fabulous family from up Gore way. What a lovely family. Josh is just gorgeous, and smiles and smiles and then smiles some more. Cass is the most beautiful little fairy and shes pretty smiley too. Then theres Mum and Dad, Paula and Chris. I can see where these gorgeous kids get there looks and personality from! You have just got it and more, and we are so thrilled to have been able to have dropped in to meet you all. Shame it couldn't have been longer but now there will be other times. Kevin said on the way home what a lovely family you all are too. It certainly was a great pleasure and made my trip to hospital so sweet. Thanks for sharing your lollies too...bet you didn't know that Kevin is a bit of a lolly-a-holic!! He was sure I had told you. Love and hugs to you all.
joystik (282 ) 7:59 pm, 5 Jul
4230. Paula, I think they thought we had got lost .....
when we got to Oncology, because Day Surgery had phoned them to say we were coming and they had saved lunch for both of us. But we detoured on the way and I had the chest x-ray, and then went visiting!!
joystik (282 ) 8:01 pm, 5 Jul
4231. Hi Sunbeamnz
Its like chemo infusions but you feel good after. No real side-effects, except maybe bruising from the actual infusion. Its good for healing, your immune system, basically makes your body's own cells super-healthy and vitamin C absorbed in high doses overwhelms the cancerous cells who convert it to hydrogen peroxide (bleach) and can't break it down. I have regular blood tests like I had with chemo to check the levels in the blood. Yeah its expensive when you add it up, but cheaper than the Taxotere chemo that made me feel AWFUL and did absolutely nothing! So I'm in... ;o) Different kinds of people in there - the more desperate kind, have to keep reminding myself that I'm not one of them - yet! Refer to page 17 of this very interesting doc http://www.sonia.tyler-davies.co.nz/CancerPaperMay06.doc
soniat-d (153 ) 8:09 pm, 5 Jul
4232. Well ladies, a very early start for us today......
I was up at 6.20 and in that shower trying o wash all the loose hair off!! There was a real heavy frost, and the truch wasn't covered so Kevin had to go out with lots of water just to unlock the doors to get in. Left at 7.15 and got there about 8.00.Did all the usual checks and got changed and off to theatre at 9.00. I was awake and back in the day surgery ward at 10.00 and rearing to go visiting!! So the portacath is in place about 4cm above my breast scar on the right side, with another small incision just under my collar bone. Joshi and Ihad a we look at ach others ports. His is very different to mine and also sited differently with his catheter going up the side of his neck, where as mine is under my collarbone. It was a bit tender to begin with especially putting clothes on and off, and putting on the make up before I went visiting!! But its fine now and I just remembered I didnt take the panadol at 4pm as instructed!!
joystik (282 ) 8:10 pm, 5 Jul
4233. So farmerlloyd
Does your wife believe in the Vit C infusions then? Is she privvy to the inside scoop?
soniat-d (153 ) 8:12 pm, 5 Jul
4234. Isn't medicine amazing Joystik?!
Glad the op went so well and that you're so comfortable. It amazes me! Wishing you well with round 2 - how'd you get on with scarves? Would you like to borrow mine???
soniat-d (153 ) 8:14 pm, 5 Jul
4235. Wow that was quick getting your new car Paula :o)
What did you get? Its a shame it was "christened" so soon - glad Joshi's feeling a bit better now, poor guy. More (((((hugs))))) from me from afar ;o)
soniat-d (153 ) 8:16 pm, 5 Jul
4236. OK its beddy time for the girls
We just got off skype talking to Brent - he still has the cold. I'm definately improving now! Girls are great. See you all later ;o)
soniat-d (153 ) 8:17 pm, 5 Jul
4237. Hi Joystik glad your feeling ok
ryan is uncomfortable for a few days when he had his hickman put in, all hes worried about is that he wont be able to play xbox.The worst part is the bandage changes,still hates it now and hes had his pic in for 12 weeks, sticky bandages hurt more than anything else.
bogeyi (482 ) 8:18 pm, 5 Jul
4238. Paual glad josh is ok
give him a gentle hug from me.What is your new car??
bogeyi (482 ) 8:19 pm, 5 Jul
4239. I was made to stay until about 11.30 at the ward..
and once they said I could go, I was on a mission! On went the make up, the jewellery, a rough attempt to do the hair resulted in a couple more handfuls hitting the floor!!, and then just as I was leaving to visit Josh, I was handed a form for a chest xray marked URGENT, to see if the port was correctly located! Foiled my pland a wee bit, but I got that done and then went to see Josh and family before going for the chemo transfusion.
joystik (282 ) 8:32 pm, 5 Jul
4240. The chemo went in thru the new port no problem..
they are just so good arent they. I so much wanted to give Josh a great big hug, but they had put the needle in under aneasthetic, and I had this long sicking out thing that I didnt want to bump cos it was still a bit tender. I'll give him 2 next time! Took about 1 1/2hours to do it, and then home. They gave me the zofran and steroids under anaesthetic as well and so far I haven't had any ill effects at all. Just took the 'after 6 hour' meds now, so looking at a sleepless night courtesy of the steroids. I feel like singing out loud - I feel so good.
joystik (282 ) 8:37 pm, 5 Jul
4241. Hi bogeyi, how did your day go with you daughter
going to have her teeth done? Hope it wasn't to traumatic for her, or you either. Do the sticky bandages irritate Ryan's skin? I found that after a couple of weeks mine got pretty itchy. She put a different type on today and said they are much kinder to the skin. Still clear, but with red line through like a string onion bag to look at! It would be terrible for him to not be able to play the X-box, so it would concern him. Have you any more details of the transplant yet?? Thanks so much for thinking about me when you have so much to think about yourself....Hugs to you...
joystik (282 ) 8:42 pm, 5 Jul
4242. Sonia, Hi, so pleased you have had a good day and
have got the Vitamin C transfusions underway. I have read quite a lot about them and they seem like a good thing.How long will you have them twice a week for?? Is there a recommended time for this or is it like a course, such as chemo or do you chose how much you wish to have?? Glad the wee girls are feeling better an you too. Your scarves....I would love to borrow them if thats ok with you. I have tried to find some down here but, none are big enough for my big head!! Thanks so much for the offer. I promise to look after them really well for you. You are so special...look how long this thread is now because you started it!! See how special you are? HUGS to you Sonia...
joystik (282 ) 8:50 pm, 5 Jul
4243. Hi dize, thanks for your messages. There are so
many of you lovely people out there. Interesting about the pressure sleeve. I have never heard of it. No one that I have seen has mentioned it at all and I had my lymph nodes removed as part of my surgery 2 months ago. Who do you ask about that?? The surgeon?? I havent had any trouble with my arm and have full movement the same as the other arm, but altitude is something else! Must find out more. I guess on International flights you ae going up further than domestic ones but the effect might be the same. Hugs to you too dize...
joystik (282 ) 8:55 pm, 5 Jul
4244. So Paula, do tell all about the new car.......
shame about the christening but it happens even in new cars.. How is that gorgeous little chap tonight anyway? Thanks for sharing your lollies kids..thats really kind. Cass, those hearts last for ages. I thought the grapes were really sour!!
joystik (282 ) 9:00 pm, 5 Jul
4245. So pleased all went well
for you today Joystik. A big day. So happy that you managed to get to meet Paula, Josh and family. Wouldn't be great if we could all get together? I too have never heard any mention of having to wear a sleeve while flying. Must remember to ask about that when I see my oncologist next month. I am amazed how well you are feeling after your chemo blast. Good on you.
maewest (75 ) 9:09 pm, 5 Jul
4246. joystik thanks for asking wow what a different
girl, for some reason she is petrified (sp) of hospitals,dentists i think it stems from seeing what has gone through since being born????they gave her some relaxing med about 10mins later she was slurring her words and seeing double, then they also gave her gas through the nose while they did the filling, no screaming not a word, then she told me its ok to go and sit with the boys in the waiting room (this is a first)she emerged about half an hour later they pulled my wiggly tooth ou Mum. What a relief I am so proud of her even if she had drugs..lol.
bogeyi (482 ) 9:13 pm, 5 Jul
4247. Hi Maewest, I really do feel great, and meeting
young Josh and his lovely family just topped the day of nicely. The Oncologist really was surprised that I hadnt been bowled over by the chemo. He said there are very few people that can take a dose the size I am having with out having at least a week out of action, sometimes the whole 3 weeks, and most often they have one mega dose, and then it has to be reduced because of the side effects. Aside from the cancer episode, I had always had excellent health though, and maybe someone is looking after me?? The pressure sleeve thing is interesting isnt it?? I've never heard of it. My friend in CHCH hadnt heard from Boop yesterday, but will pass the message on if she does. Hugs Maewest....
joystik (282 ) 9:17 pm, 5 Jul
4248. Hugs to you too Joystik
Maybe they are being kind and giving you a lower dose LOL! Long may it continue for you. Maybe those supplements you are taking are doing the trick. Hope you manage to get some sleep tonight.
maewest (75 ) 9:20 pm, 5 Jul
4249. Thats great bogeyi, nothing worse than a.......
performance if there doesnt have to be one is there. It might as well be done in a more humane way to save the strss. Good on her!
joystik (282 ) 9:21 pm, 5 Jul
4250. Yes maewest, I think it is the supplements that
are helping it out. No, its the same big dose, I had the head Oncologist from Dunedin yesterday, and he said the big dose was by far the best option if I could handle it, to be sure af a good result, because of my circumstances, with the grade, size and heavy lymph node involvement.
joystik (282 ) 9:24 pm, 5 Jul
4251. Sonia that is interesting about
those vitamin C infusions. They can only do you good. So pleased you are all feeling better now. Have managed to avoid coughs and colds so far this year. Bogey, my younger son used to be like that at the dentist and his first filling was done with the gas. It was great. He's ok now though. Mind you he is now 21!!! LOL! Hughs to you and Ryan. Paula, so sorry your new car gor christened today. Poor Joshi,he must have been feeling dreadful after his treatment. So pleased you met Joystik. Must have been lovely for you all.
maewest (75 ) 9:24 pm, 5 Jul
4252. Hi Joystik ;o)
Would you believe I can't find my letter about my proposed treatment - it's here somewhere... I think it was a couple of months on 2-weeklies and then it steps down to maintenance, like weekly, then fortnightly. Will check on Friday and let you know. They advise against it during both chemo and radiation. Went through the vein in my hand that my chemo went through - its still as good as ever ;o) They treated me nicely, hottie under the arm etc. Took about an hour - but its location means afternoons long term not ideal - came out straight into Newmarket's rush hour - not pretty!
soniat-d (153 ) 9:44 pm, 5 Jul
4253. Oh and they start you off on a low dose and
double next time etc, then blood test after second one... apparently I'll take heaps orally while away in Fiji (IF that happens - still trying to arrange the accomm, person arranging it seeems a bit slack, but only way to get a awesome $$$ rate!)
soniat-d (153 ) 9:47 pm, 5 Jul
4254. Glad the dentist went well for your daughter
Bogeyi - till now I thought you just had two boys! What is her name? :o)
soniat-d (153 ) 9:48 pm, 5 Jul
4255. where abouts in fiji sonia
on the mainland or one of the islands
bogeyi (482 ) 9:49 pm, 5 Jul
4256. kirsty shes the one in pink in the pics
on ryans website.
bogeyi (482 ) 9:50 pm, 5 Jul
4257. Current plan is the Sofitel on Denerau
Its pretty much brand new and yummy with an apparently amazing pool, great kids club etc :o) Critical thing is very set time frame and we want adjoining rooms (not many of those there). I'll have to call her again tomorrow I think, time's a wastin'!!!
soniat-d (153 ) 9:56 pm, 5 Jul
4258. Kirsty, thats nice :o)
Yes I saw her on the website today, but never saw her there before - am I blind?! LOL Man, I'm losing it!?!
soniat-d (153 ) 9:57 pm, 5 Jul
4259. i love fiji
last year there was alot of building going on there new houses/hotels etc.
bogeyi (482 ) 9:59 pm, 5 Jul
4260. Ok all you lovely people on here.........
I'm off to bed. Seems like I have been up for hours, and I feel quite tired so maybe I will sleep tonight?? We shall see. Paula, thanks for making my day to lovely. You are sweetness itself I think... Hugs all round everyone....Keep warm wont you..see you tomorrow.
joystik (282 ) 10:08 pm, 5 Jul
4261. Yep Brent's cousin's company
moved over there (his cousin and family included) to assist with all the construction - they do all the land preparation for the roads, highways etc. Because of whatever they did for the Sofitel (and because business guests stay there) we can get the company's discounted rate - makes quite a difference! Yay for that, with all the $$$$ we've plied into fighting this monster! Brent's cousin was the birthday boy at that huge party we went to, and their new house is a stone's throw from the Sofitel, which will be great. His wife beat Hodgkins Disease in her early 20's BTW - a very very cool lady, and family ;o) We love Fiji - used to go once a year, missed last years because of all the IVF then the monster... soooooo looking forward to it :o)
soniat-d (153 ) 10:11 pm, 5 Jul
4262. 'Night Joystik - I MUST go too
Nightie night everyone xoxoxox
soniat-d (153 ) 10:12 pm, 5 Jul
4263. Me too
Nitey nite XXX
maewest (75 ) 10:14 pm, 5 Jul
4264. Goodnight Maewest
Good to see you, glad you have a healthy home :o)
soniat-d (153 ) 10:18 pm, 5 Jul
4265. nite joystik,sonia,maewest,paula,boop
im off to im so tired and have to get up early and go to starship...
bogeyi (482 ) 10:19 pm, 5 Jul
4266. Evening ladies
Hi all it's Chris here. Just a catch up to say Paula and Josh have gone back to the hospital cause he has spiked a temp. They have just put him on antibiotics and done some bloods to see whats going on. His temp got to 38 here but was down to 37.4 when they got there. Paulas driving I think.J/K When Paula asked me to post a message I thought I could really have some fun here and everyone would think Paula had lost the plot I teased her about it But I'm really a sensible and mature adult so I would never do something like that. It was great to meet you and your husband today Joystick. We'll have to catch up properly next time. All you people have become very important to Paula.
paulaxx (77 ) 10:49 pm, 5 Jul
4267. Hi joystik
My surgeon sent a physio to see me the morning after my surgery, to start exercises (I had a lumpectomy & some lymph nodes removed, not anywhere near as drastic as you had) and she said it is absolutely essential to wear a pressure sleeve whenever you fly, or even take a very long car or bus journey. I was fitted for it a few weeks later. It was expensive, but I believe you can get them free through referral from public hospitals. If you don't wear the sleeves, you can get lymphodaemia?? (forget the name) where your arm bloats up enormously and it never comes down again. I have seen a few of them on the planes, but Sonia says she always covers hers up, and really I guess we don't take much notice of other passengers. Ask your oncologist about it, I am surprised it hasn't been mentioned. All you other ladies on this thread, do you have a pressure sleeve?
dize5 (458 ) 10:49 pm, 5 Jul
4268. Aww hi Chris
Can't wait to meet you all in a few weeks ;o) Sorry to hear of Joshi's temp, hope it all settles down. He's such a brave boy - you must be so proud :o)
soniat-d (153 ) 10:51 pm, 5 Jul
4269. Hi dize 5
Good on you for pointing that out, yes it is very important. My grandmother dropped dead after flying over from Aussie to visit us (blood clot) so I know just what can happen. Was updating my webpage and just popped in here again - naughty me! Ok OK I really really AM off now, gotta pop my melatonin and hit the hay ;o)
soniat-d (153 ) 10:54 pm, 5 Jul
Yeah it will be good to catch. Paulas rearing to go. I'm just waiting to see how things are going. She will be sleeping in a chair by his bed and she is already pretty knackered
paulaxx (77 ) 11:00 pm, 5 Jul
4271. I'll say she must be after last night with cassie!
Oh poor Paula, will be thinking of her and Josh tonight, as always. (((((hugs)))) to you all
soniat-d (153 ) 11:02 pm, 5 Jul
4272. I have been catching up for the last 1 1/2
hours. Hi Chris I do hope wee joshi is okay and paula get's some sleep.I read in this month's womans weekly about a little girl who had the same as joshi and she is doing so well now. Good luck. Hi Bogey, you have such a stressful time ahead of you I have just been to ryan's site and seen all the lovely photo's of him, tyler and Kirsty (I think).I wish you all the luck in the world bogey, god bless . Bet
boop2 (106 ) 11:24 pm, 5 Jul
4273. Hi sonia
The girls have been keeping you busy I hope Em's better tomorrow. That is good news for you about those demon lumps. All the best for your ho;iday plans you certainly deserve one.Take it a bit easy eh? hugs
boop2 (106 ) 11:27 pm, 5 Jul
The doctors were coming back to do some bloods from a fresh site ie hand, foot or somewhere other than his port and Josh so hates that, poor boy. Yes I'm am really proud of him and all my family for that matter, I really don't know how Paula has stayed sane. Joystick I hope the chemo isn't knocking you round tonight. You are a very special lady and Paula said wow that's just how I imagined her to be. Oh the car I nearly forgot It's a mazda eunos and it's really tidy and it's kind of a purpley Maroon(?spelling) colour. 85000ks on the clock and owned by an elderly couple. We didn't believe the salesman but when we looked in the car we found a couple of grey hairs.Yup we're going to become private investigators. It's an auto, but it sounded kinda funny when they drove out tonight cause I've got used to hearing the V8 leave and so it sounds a bit tinny. Any how I better hit the scratcher so on behalf of Paula and co nanite everyone
paulaxx (77 ) 11:28 pm, 5 Jul
Hi ...I am sorry to say that my wife cannot tell you how effective those Vit C treatments are, because she is not his nurse.. You may have gathered I am a survivor of a leukaemia bug which was treated more than three years ago with a short course of chemo...that has chased the dreaded disease away and I cannot tell you how happy I am to turn up normal bloods ( well almost normal) ever since ... There is a name I would like you to google if you haven't heard of him before .. as this man ( an Australian no less!) was on a speaking tour throughout NZ at the time I was sick.. Ian Gawler..(I listened to an interview he gave on the radio at the time and was very impressed). I haven't spent the 4000 or $5000 that they were looking for, to help give tools for people fighting cancer, but if my circumstances were different I would be off to one of his clinics like a shot !!
farmerlloyd (23 ) 11:34 pm, 5 Jul
The only claim I can make to Vit C is .. that I have developed a bit of a food fad since summer... eating lots and lots of oranges ...maybe I am subconsciously trying to raise my Vit C levels ???
farmerlloyd (23 ) 11:35 pm, 5 Jul
4277. Hi joystick and maewest
I am home at last we are terrible as soon as we get there we want to come back again. Sorry maewest would have loved to have met you. I just bought a new cell phone in Ch Ch and tried to text my family on the way back, talk about useless will have to learn how to do it properly as where we lived before we couldn't get reception so didn't bother. Why did I think you were a nurse? It was cold over there, our ute wouldn't start needed a new petrol pump and air cleaner. Hope you are okay.Joystick how well you sound and what a lovely day to meet Paula, Joshi, Chris and Cassie it is so good to put names to faces.I am proud of you and how you are handling all of this. Along way back now in the thread you asked about my wee grandaughter well she is 4 now and is my youngest son's wee girl and is so precious as we lost him nearly 3 years ago. I have 3 grandsons and another grandaughter who I have just stayed with.
boop2 (106 ) 11:44 pm, 5 Jul
4278. joystick you will be missing Lauren, is the house
quiet without her? Take care and keep up the good work, hugs
boop2 (106 ) 11:46 pm, 5 Jul
4279. I ran out of space
meant to say my other grands are just delightful too all doing so well at school and are sport mad except for courtney who say's the boys have put her off it.
boop2 (106 ) 11:51 pm, 5 Jul
4280. hi chris......hope josh is a bit better this
morning and paula managed to get some shut eye. I know how you feel Paula, Tyler has been up and down all night vomiting so I to have the panda look..lol.We are off in half an hour to starship so will pop back in later. Hello to everyone, hope your day is a good one.
bogeyi (482 ) 7:26 am, 6 Jul
4281. Hi bogeyi ;o)
Yikes that's no good with poor Tyler, so not what you need?! Hope its settled down and the rest of the fam don't get it (touchwood). Good luck with Starship today.
soniat-d (153 ) 8:13 am, 6 Jul
4282. I have a pressure sleeve thingy
got one 3 years ago when they did the original lumpectomy and sentinal node biopsy and I got told to wear it every time I went flying. Nobody mentioned the long trips by vehicle tho but I can see the sense in that.Now that I have had more nodes removed I also wear it when I'm using that arm a lot doing things I shouldn't be doing!. Arm is only 1cm bigger than the other so it must be working.
sunbeamnz (72 ) 8:23 am, 6 Jul
4283. Good morning everyone
Boop, yes it is cold over here. Going to be another cold one today by the looks of things. We will catch up one day. Chris. I do hope Josh is feeling better this morning and starting to get on top of things. Poor Paula, you must be absolutely shattered. (((HUGS))) to you all. You too Bogey, just what you need right now. Hope all goes well at starship today.
maewest (75 ) 8:44 am, 6 Jul
4284. Joystik how are you feeling
this morning? Hope you had a good night's sleep. My sleep patterns are terrible...I blame the Arimidex!! Mind you it gets blames for lots of things which are probably old age symptoms!!!! Hehe. How are things in your world today Sonia? Have a lovely day. Has anyone heard how things are going with Twinkies and Bryianna? Sunbeamz that is interesting about the pressure sleeve. This is the first I have heard about that unless you actually have lymphodoema. It makes sense though. Must make some enquiries. You have a lovely day too.
maewest (75 ) 8:52 am, 6 Jul
4285. Good morning to you too
Farmerlloyd. I am a bit naughty in the fruit department. Only hook into oranges etc if I feel a cold coming on! I eat heaps of vegs though. I did try taking Vit C tablets a couple of months ago but they made me feel nauseous....am I strange or what??!! So pleased you have been clear for three years. They must have caught it nice and early.I see you are another Southlanderrr.What is it down there! Mind you there are 3 of us within 2km on my road who are all at different stages for treatment of breast cancer. Hmmm
maewest (75 ) 8:58 am, 6 Jul
4286. Morning everyone
Have spoken with Paula and she seems to think they will be home today. She didn't get a lot of sleep. Josh is pretty chirpy and they say it's just a cold.It's going to be a cracker of a day, bit nippy though -1 at the moment. I hope they don't leave to early as I think the roads will be a bit dodgy. I'll let you know more as soon as I do. I better go and do the house work now. A mans works never done. lol
paulaxx (77 ) 9:55 am, 6 Jul
4287. Thanks for the update Chris
Good that Josh is feeling better today. I think it may be Paula who needs the TLC today. She will be feeling shattered after 2 nights with not much sleep. Dull, overcast and cold here in Nth Canterbury. Love to you all XXX
maewest (75 ) 10:01 am, 6 Jul
4288. nuther update
Turns out Josh has a virus and bronchitis, but they are still coming home today.
paulaxx (77 ) 10:49 am, 6 Jul
4289. Oh no to the Riddle family
Poor Joshi - thats chemo for you, really stuffs the immune system, mind you there is so much going around at the moment. Hopefully antibiotics will sort things out for him. Oh Paula, hope you have a cap nap today, the housework can wait (sounds like you're a great support helping out Chris - awesome :o)
soniat-d (153 ) 11:55 am, 6 Jul
4290. Hi Maewest :o)
All is well here thanks, Em's still a bit moany but her ear should be resolving by now. Lydia finished her antibiotics this morning, Em's got a way to go with hers. I'm feeling great today, dropped off my wig for a service LOL on the way to Kelly Tarltons (sadly half of it is closed thanks to a big flood caused by those powercuts - news to me, feel like I live on a desert island sometimes!). So, back to the wig service, I was therefore out today wigless in the cold - wore one of my new trendy caps, no-one stared, so must have looked OK, I think it looks quite good actualy ;o) Picking up wig this avo. Got the fire on, man its cold (for Auckland ;o)
soniat-d (153 ) 12:01 pm, 6 Jul
4291. Whoops Paula got caps on the brain LOL
I meant cat nap LOL
soniat-d (153 ) 12:02 pm, 6 Jul
4292. Hi Sunbeamnz
Seems they always foget to tell us something important. I too knew nothing about the sleeve things till I was getting a prosthesis for a swimsuit and mentioned we were about to fly out, and the shop lady told me!
soniat-d (153 ) 12:03 pm, 6 Jul
4293. Hi boop2
Yep taking it real easy, only doing the essentials ;o) Thanks for caring :o)
soniat-d (153 ) 12:05 pm, 6 Jul
4294. we are home now
have appointments coming out of our ears now :(
bogeyi (482 ) 12:09 pm, 6 Jul
4295. the sleeve
was stressed as very important. Or maybe because I was already aware of lymphodema having read a article about some poor woman whos are was a big as her thigh, and therefore quizzed the surgeon on it bigtime.
sunbeamnz (72 ) 1:04 pm, 6 Jul
4296. Hi Maewest
Thanks for your response to my post The Leuk I was diagnosed with is quite rare, only occurs in about 4 or 5 % of cases & is called hairy cell leuk. and is the best of a bad bunch ... there are more than 100 different versions of leukaemia .. and hairy cell is one of the most 'treatable' according to the doctors So I feel very very fortunate to keep so well with no medicines or potions . You mention the occurance of cancer, it seems to be all around .. It must he on the increase.. when I went to school it was one in 5 ... nowadays days the ratio is 1 in 3... that is so common that almost everyone without it will know someone with it !!!Must continue with the farm chores. Best wishes to everyone here .. Lloyd
farmerlloyd (23 ) 1:07 pm, 6 Jul
4297. Are you OK bogeyi?
I'm sensing stress!?! How is Tyler now - and when are all the appointments? Next few days or over weeks??? ((((hugs))))
soniat-d (153 ) 1:08 pm, 6 Jul
4298. What are the 1 in 3 stats Farmerlloyd?
Thats scary! Yep its on the increase all right - what are we doing wrong?
soniat-d (153 ) 1:12 pm, 6 Jul
4299. OK everyone here comes another hundy...
Everyone, when did you...
soniat-d (153 ) 1:26 pm, 6 Jul
4300. last have a mammogram?
soniat-d (153 ) 1:27 pm, 6 Jul
4301. just popping in to say hello!
and my how you have grown thread!I do check in everyday and have a read..You make me laugh..you make me cry..and you make me feel VERY thankful that all I have to cope with is diabetes.cant say much more cos the inks gonna run! hehe
cloffie (47 ) 1:34 pm, 6 Jul
4302. Thank goodness for this thread.
I was really shocked at how lax some professionals are, in not stressing the importance of the pressure sleeve, in fact, not even mentioning it. Just as well this thread is here so we can share our information. I was appalled at joystik and sonia in particular not being told, when they lost so many lymph nodes, what if they had decided to have a quick holiday overseas before starting chemo? It looks as if sonia nearly did get caught out. Once the swelling is there, it is there permanently. I have actually seen a very bad case of it. Yuk!
dize5 (459 ) 1:36 pm, 6 Jul
4303. Wow Dize5
I didn't realise the swelling was permanent - yikes! Here I was hoping it was temporary! OK so now I've gotta hope the swelling under my arm is water retention, not lymphodema... Yep I also wasn't told that a prosthesis was important to avoid back problems later!?! That said, haven't worn mine for a good few months now (skin too sensitive from radiation) and considering not using it again except with certain tops that look terrible without!?! My other boob is not that big anyway, doubt its causing too much of an imbalance LOL
soniat-d (153 ) 1:57 pm, 6 Jul
I have a friend who lost lymph nodes in her groin, and one of her legs is absolutely gy-normous now. She wears a pressure sleeve from thigh to ankle every waking moment, and suffers terribly in the heat of summer. She had surgery to try and fix it but it didn't work. No one had told her to wear a pressure sleeve on her leg when flying, after her surgery. She doesn't let it worry her too much, and wears shorts in summer, but it need not have happened at all. Sad.
dize5 (459 ) 2:09 pm, 6 Jul
4305. hi sonia, im fine no stress the sad face was
just a reflection on how i feel when you get lots of appointments you know its getting closer.... at this stage 1 next week (but im sure more will pop up) week after 4, then the next week monday we will be in to start our journey.He goes in on the 20th for his hickman
bogeyi (482 ) 2:10 pm, 6 Jul
If your swelling is just under your arm, it probably is only water retention. With lymphodaemia, the whole arm balloons up, even the fingers. My pressure sleeve is separate to my pressure glove, and I can take the glove off in the plane to wash my hands or eat, then put it back on straight away. Is yours like that? I have seen them all in one piece, which would be awkward, and I imagine would be harder to put on. I cannot put mine on by myself.
dize5 (459 ) 2:14 pm, 6 Jul
4307. Hi ladies, I am so late posting today.....been so
busy today. Trying to cope with all this hair going everywhere. Not much to fall out now. I washed it in the shower and hey presto, came out almost bald. On went the wig, the lovely new silver dangly earrings, the make up and hubby said'wow, you only look about 30 in the wig' Made my day!! I'm goig to keep both him and the wig now!! So lots of time spent vacing the floors, washing on line and now I'm off for a walk. I will post later....promise. No side effects from the chemo....its got to be the supplements, and I've got a web site for you to check out http://www.aihm.wa.edu.au/research%208.html I think its well worth a read and explains pretty much why I am so well depite being given such a hefty wallop of this chemo.
joystik (282 ) 2:21 pm, 6 Jul
4308. Hi Paula and Joshi, are you home yet wee man??
Hope they have got it sorted for you at Kew. They are such a lovely bunch of nurses and Dr's in there aren't they. Hugs to you and mummy Josh and get better quickly will you please???
joystik (282 ) 2:22 pm, 6 Jul
4309. ??? I don't have a pressure glove!
Only the sleeve - I need Brent's help to get it on - we put it on in the airport baby change room just before boarding the plane!
soniat-d (153 ) 2:36 pm, 6 Jul
4310. Cancer suxs alright
My dad has been diagnosed with bowel cancer and its spread to his lymph nodes.Told him chemo isint going to help but only prolong his life. :( Today was his scan to check how the chemos been doing and its done nothing.The cancer has got bigger so his 3/6month left to live is looking not good.!! Suxs ahe.SOrry I havent read all the others posts in here but I feel for you all and your pain and suffering also. xx
bounty21 (22 ) 2:39 pm, 6 Jul
4311. Sorry to hear that Bounty
Chemo didn't work on my cancer either - the lumps actually grew back during it! I've just started vitamin C infusions - refer to by post #4231 two pages back... Maybe that's an option for your dad? (((((hugs)))))
soniat-d (153 ) 3:06 pm, 6 Jul
4312. done all ryans photos on his website
now.....gawd i feel so clever...haha
bogeyi (482 ) 3:53 pm, 6 Jul
4313. forgot to say i just won tickets to
swan lake on ice off the radio..yipee
bogeyi (482 ) 3:55 pm, 6 Jul
We're back. Josh is looking so awful. Pale and heavy under the eyes having seen him looking like this for ages :o/ It was great that Chris came on here last night, he really enjoyed it. Thanks for all your constant support and loving thoughts. You all do mean the world to me! I am going to try for an early night, gone from the Panda look to skunk!!! Still smiling though. Got a bit of a cough now too, so need to get on top of that! Hope everyone is doing well. Love and thoughts to you all xoxoxoxoxxoxox
paulaxx (77 ) 3:58 pm, 6 Jul
4315. YAY - Bogey
Another good thing happens to a very deserving person. Hope Tyler is on the improve. Oh and Josh didnt get any antibiotics, just gotta let it run its course. Bloods have gone down so more tests tomorrow, Monday and Wednesday. Glad Kirsty was ok too, was wondering last night. Hugs to you all
paulaxx (77 ) 4:00 pm, 6 Jul
4316. paula glad you home, give josh a gentle hug
from me, thanks for thinking of us tyler is in the same place where i left him this morning before hospital, in front of the tv and fire, has managed to have a tiny bit to eat and drink.
bogeyi (482 ) 4:03 pm, 6 Jul
4317. Oh Paula, pleased you're back home again...
but not happy that wee Josh is not so well. Bronchitis is an awful thing. Is that brought on by the chemo and drugs he's on?? There can be so many side effects aye. You will still look gorgeous Paula, just a little worn down and weary. Hope you get an early night and sleep well Thank Chris for keeping us up to date with what was happening, I found his posts after you txt! I was a bit slack last night and this morning early on here. Hugs to you all....
joystik (282 ) 5:10 pm, 6 Jul
4318. Pressure sleeve
We put mine on at the airport too, in the baby change room or the disabled toilets, as they are larger and often unisex. Sydney airport has huge unisex toilets. As soon as I am through customs, it is off, and I can remove it by myself.
dize5 (459 ) 5:11 pm, 6 Jul
I think I better just do what I have to do then go to BED! As long as Josh is ok... its a good thing we live in the country cos I just burnt the toast so wickedly if anyone lived close to us they would have definately called 111. Cass had a bad blood nose in the middle of cooking Joshs tea (toast) just had to run. Chris came in to see Cass, stop, drop and rolling - LOL. At least I know she knows the drill if it was for real. K going to say nanite now. Hope Tyler is better in the morn, Bogey. Love to everyone. xo
paulaxx (77 ) 5:45 pm, 6 Jul
Hi there and sorry I didn't give you a link on Ian Gawler last night but for you Sonia ... or anyone else interested in finding out a little bit about this man and his work ... here is one link ... http://www.gawler.org/html/getFile.asp?table=tbl_TCA_Article_Files&field=image&id=64
farmerlloyd (23 ) 7:11 pm, 6 Jul
Hi, thanks for your lovely comments. Dont think this is bought on by chemo. Just think its his asthma, but then again, his body is tired too so??? not sure. He is sound asleep, almost sitting up. First time hes been to sleep b4 10 for ages. Have a lovely sleep too.
paulaxx (77 ) 8:20 pm, 6 Jul
just thinking about you. Hope you manage to get some rest tonight. Hope Tyler is better and no one else in your house gets it!! Hugs to you guys
paulaxx (77 ) 8:21 pm, 6 Jul
Are you watching the Rock Star programme? Thinking of you. Love and hugs to you all too xoxo nanite everyone.
paulaxx (77 ) 8:22 pm, 6 Jul
4324. Hi everyone just got in
Man, what an embarrassing end to our fab shopping expedition this evening at St Lukes, Emily started to throw a paddy just as I was unloading the groceries at the supermarket (before coming home) but she was heading for the floor just as I was moving around to back of the trolley to push it forward, DVDs display stand in the way, no way to recover, over it and I went, over Emily. CRASH! I'm sooooooooo embarrassed!?! Emily was shocked but fine (DVD stand was compromised to save Emily!). Looked and sounded most dramatic #red face#. Won't be going back there in a hurry LOL :o/!!!!! OK gotta put girls down now... then put my feet up - what an afternoon!?!
soniat-d (153 ) 8:37 pm, 6 Jul
4325. paula he is much better has been walking
around for the last couple of hours but has a terrible cough still, sometimes he cant stop until hes almost sick. Hows josh now???and how are you???
bogeyi (482 ) 8:38 pm, 6 Jul
4326. bogey and paula
my heart goes out to you guys and what you are going through wish I could help. Hugs to both joshi and Ryan and let's hope you all get a goodnight's sleep.
boop2 (106 ) 8:56 pm, 6 Jul
4327. you can boop
im sure i wouldnt be the first mother to squash her child into a box and send courier post, for free i might add...lol
bogeyi (482 ) 8:58 pm, 6 Jul
4328. sonia I couldn';t help but have a wee giggle over
Em sounds like she was really stroppy. Give her a big hug from me.Put your feet up and forget about it they probably have worse than that in the hols.Hope your family all have a goodnight.
boop2 (106 ) 8:59 pm, 6 Jul
4329. you still have your sense of humour
bogey, good for you. I had three sons so I know what you mean.
boop2 (106 ) 9:01 pm, 6 Jul
4330. Hi joystick
Kevin couldn't have said anything nicer to you I thought that was lovely. You just sound so great. Hugs
boop2 (106 ) 9:09 pm, 6 Jul
4331. Hi maewest
that is an awful lot in a small area to have bc.What suburb are you in? Have a good rest and wear your long johns!
boop2 (106 ) 9:15 pm, 6 Jul
4332. Hee hee boop2
Yep I'm sure everyone else in the store laughed too LOL - what a sight that must have been! Em was screaming her head off, adding to the drama, she stopped by the time we got to the car... what a long minute that was! She's always been stroppy, she's just like that old nursery rhyme, and she has this persistent curl, right down the middle of her forehead LOL. When she is good, she's very very good ;o)
soniat-d (153 ) 9:27 pm, 6 Jul
4333. (((((((hugs aplenty)))))))) from soniat-d
to Paula, Josh, Bogeyi, Ryan and siblings. What a rotten time you are having at the moment - my sincere sympathies xoxoxox
soniat-d (153 ) 9:29 pm, 6 Jul
4334. so theres cheap dvds at the supermarket
in st lukes????sorry sonia couldn't help myself, but its a giggle now you can look back on it.
bogeyi (482 ) 9:37 pm, 6 Jul
4335. Hey, I was almost laughing myself at the time!
Hey if you can't laugh, you cry LOL
soniat-d (153 ) 9:43 pm, 6 Jul
4336. Well I didnt get back today as pomised and now I
am off to bed. I feel a bit tired tonight, but then I suppose no sleep hardly last night, and then a big walk today, so I will sleep tonight. Its been a bit of a funny day all round just judging by some of the above posts. Thank to you all for your lovely messages. Glad you had a nice time Boop. Did you get to see Sherri and Ray? She was hoping to see you once I told her you were over. Begeyi, you will be hoping for Ryan cough to subside prettty soon. His pics on the website are gorgeous. All you kids a very beautiful too, must take after their Mummy. Sorry your day went to pieces in the end Sonia. Mmmmm...strong willed children....I have one of those. Sounded really funny though all the same!! Paula, I hope Josh has a good sleep and you too, you will need it by now. Sorry about the burnt toast, I thought I could almost smell it from here!! Hope the blood nose didn't last too long. Hugs to you all and sweet dreams too
joystik (282 ) 9:55 pm, 6 Jul
4337. Hi dize and thanks for the info re pressure sleeve
I will have to investigate more during next week. Haven't ever been told a thing about them actually, and I had 16 nodes removed. Bounty, sorry to hear your bad news. Thanks for posting and we will be thing of you. Hi farmer lloyd, that link is very interesting about the Vit C. I am taking all sorts of supplements and have hardly suffered any side effects from my Mega dose Chemo, whichhas really surprised the Oncologist. Hi Kiwikaz, hope you week is going well. Been thinking of you too. Hi Twinkies and Briyanna,hope you are still coping with your teatment ok. Landylass, are you home tonight?? Might see you here tomorrow. Hugs to you all and sweet dreams to you too.....
joystik (282 ) 9:59 pm, 6 Jul
4338. Goodnight everyone
I had a lovely afternoon with my 'new' friends today. Went to the health shop and got some mega multi vitamins and CAA to take. Hopefully that will help with the tiredness. Sonia, I couldn't help but laugh at your time in the supermarket. I think we have all been through similar experiences with young children. Boop, I live in Tuahiwi, near Rangiora which is north of Chch. Paula and Bogey, hope you both get a good night's sleep. The boys too. And Joystik, you go girl. You are doing so well. Twinkies, Dize,Farmerlloyd, Bounty and anyone I have missed. Sweet dreams. Nite nite XXX
maewest (75 ) 10:13 pm, 6 Jul
4339. Hugs to Ryan and Joshi
Paula and bogeyi you are amazing staying strong for your boys. I know its hard seeing them treated like pincushions and going through the same tests over and over again and the endless medication. my kids have been very sick so I know how hard it can be. I guess what I am wanting to say is "Enjoy the good days " the kids know when your sad and worried.
janetmk1 (38 ) 10:44 pm, 6 Jul
You are all amazing and my thoughts are with you all. Though my battle with cancer was 15 years ago.I know that ultimately the real battle is how we handle it inside in our own private thoughts. I am glad you are all sounding strong and positive (everyone has bad days too) as much as possible as it really does help your recovery
janetmk1 (38 ) 10:56 pm, 6 Jul
4341. thanks janetmk1
bumping for the morning. Paula Josh hope you guys had a better night.
bogeyi (482 ) 7:37 am, 7 Jul
4342. Morning Paula and Bogeyi ;o)
Was thinking of you both last night. How did you did on? Wishing you a good day today :o)
soniat-d (153 ) 9:24 am, 7 Jul
4343. Hi Janetmk1 :o)
Thanks for your lovely posts :o) It's great hearing from other BC survivors - helps top up our faith and hope jars ;o) Congratulations on beating the monster and wishing you continued good health too.
soniat-d (153 ) 9:27 am, 7 Jul
4344. Hi Joystik ;o)
How are you today? Thanks for that link ;o) I printed it off and will read it at my Vit C infusion this afternoon :o) Parcel will be posted this morning - hey, remember NOT to cook with your wig on! It could melt! (When opening the oven) I started off wearing mine and just taking it off when about to open oven, but once I nearly forgot I was wearing it, which you do after a while ;o)(I remembered JUST in time!) so from then on, when cooking time started I made habit of changing to beanie/scarf combo ;o) Also be aware of those outdoor gas heater thingys, once I didn't notice it and was sitting right under it (if I'd stood up...!). Also, at Guy Faulkes, wear a scarf! Sorry just my personal close-call experiences LOL Fortunately saved just in time both times!
soniat-d (153 ) 9:41 am, 7 Jul
4345. Hi Maewest :o)
Guess I've been lucky up till now?! Personally I've never seen any other mothers fall over DVD stands LOL but I'll keep my eyes open ;o) Guess I definately won Klutz of the week award yesterday LOL. Ems gorgeous this morning - we went to the Kmart Toy Sale and I couldn't resist a Dorothy the Dinosaur dress-up costume, hugely reduced. Shes all dressed up this morning in it and looks cute as a button :o)
soniat-d (153 ) 9:45 am, 7 Jul
4346. Oh hi Farmerlloyd
Thought I'd replied to you already? Thanks for that link - also looks interesting - also printed off to read at my Vit C this afternoon. Thanks v much and have a nice day :o)
soniat-d (153 ) 10:57 am, 7 Jul
4347. Hi guys
We are ok thanks. You are the best support anyone could ask for! I woke up with a wicked headache! Josh is still looking pale and yucky! His spirit today is fisty to say the least. I am going to steer clear. Been in to town for the bloods etc, managed to rip around the supermarket. Josh just seems to have an attitude? Best we just let him play on his xbox ... Cass woke up with a bad blood nose again so am getting her checked out by the doctor next week, when he gets back from holiday. :o/ I want her seen by the same guy that Josh is under, he is so nice!!! Bogey pleased to hear Tyler is on the mend. How was your night.
paulaxx (77 ) 1:06 pm, 7 Jul
Sounds like you had fun last night! MMM, gosh Emily sounds like Cass. To look at her butter wouldnt melt, but when she wants something she wants it NOW!!!! Its taken me so long to get used to her and she and Josh nature wise are like chalk and cheese. But she has mellowed someshat since starting kindy and school. I do feel for you tho. But am also smiling about the whole ordeal. Sorry! ;o) BY THE WAY - spoke to Dr's nurse today about getting a mammogram. So its in the pipeline. Just waiting to hear back from her, about a referral etc. The mobile bus is in Gore at the moment so that would be perfect. We shall see... hugs to you
paulaxx (77 ) 1:10 pm, 7 Jul
4349. Hi Paula, good to see Josh's fighting spirit is
alive and well!! Good sign if he's a bit sparky, do you think? Good on you for organising a mammogram. They will probably try and tell you tht you are too young, like they did to me. Tell them to 'suck eggs"!! like I did!! See I'm a bit fiesty too!! Could be the red head in me?? Cant really imagine wee Cass throwing a big 'burko'. she looks far to cute and placid. You enjoy your day and rest up wont you.....
joystik (282 ) 1:35 pm, 7 Jul
4350. Hey Sonia, thanks for all the information re the..
wig. Shelley that supplied it gave me a list of what not to do and said she had seen a few melted ones! Imagine having that hot melted stuff stuck to your forehead?? NO THANKS. I will be careful. You are so helpful.. Look forward to the scarves arriving too.. thanks! Hows the little fiesty girl today? They have days like that dont they. Hope you're having a fun time with them in the holidays. When is Brent home again?? You will have plenty of reading to do during your Vit C infusion today. Do you feel any effects from it yet?? Have a great day Sonia....
joystik (282 ) 1:40 pm, 7 Jul
4351. Hi maewest, good to see you again....glad you
had a nice time out with your friends yesterday. I just found out my brother has moved to Rangiora, and lives in White Street with his new partner. Pleased to see you are on to the multivitamins and CAA. That stuff is truly wonderful and I'm sure is what has saved me from terrible side effects of this chemo. Like I have said before, the Head Oncologist is just so blown away by how I have managed to get through with very little side effects, and it can only be that I think. I get mine from Health house in Tauranga, in BULK and Kevin and Lauren take it too. Talk again soon....
joystik (282 ) 1:44 pm, 7 Jul
4352. Hi Boops, hows things in Westport today??
Glad you had a nice time with the grandies over in Canterbury. Sherri really doesn't enjoy CHCH at all and I think will go from there before too long. She said she will miss you when they go to the bach now. But you're only down the road so they can call in for a cuppa, like I will be!! You'll always have visitors. I'm still feeling great today and slept like a baby last night. Going for a walk to post a letter soon while its still suny, seeing as we are going to get some rain. See you again soon too...
joystik (282 ) 1:48 pm, 7 Jul
4353. Hi Bogeyi, whats happening at your place today??
Is it nice and sunny and outdoors sort of weather or a new tele watching day?? Hows Ryan's cough? Did you manage to get any cheap DVD's from St Lukes?? ha ha ha (sorry Sonia!!) It did sound so funny though didnt it. I haven't done too much today so far but I am just going to break out and go briskly walking up the road. I feel great so might as well get out and do stuff aye. See you later.....
joystik (282 ) 1:51 pm, 7 Jul
4354. Hi all :o)
Well, maybe its a coincidence, but soon after I finished my infusion my cold just resolved itself, cough stopped, nose stopped... so I have good faith in the stuff, particularly given it was a low dose ;o) Had a wierd mean headache last night though - hope that's not from the vit C!? Probably just from the outragious incident LOL. Em's a bit wierd again today - she didn't sleep yesterday so tiredness was the problem last evening, and probably this morning. She'll be right after her sleep now. The room is quiet ;o) My Paula, our kids sound soooo similar! Lydia is so lovely and sooooo like me and Em's the complete opposite! She's an absolute classic though, couldn't be without her! She was a nightmare baby, not all her fault though, permanent ear infections and the like... when she's good she looks just angelic and butter would melt and I just cuddle her constantly - my MIL thinks I do it too much LOL
soniat-d (153 ) 1:52 pm, 7 Jul
4355. Hi Janet, thanks for your message....Its stories
with happy endings that we all like to read on here. Yours is a very positive one. Yes it is all about how positive we can stay through all this and how one feels inside and about them self. I hope everything continues to be good for you in the future.. Hugs to you......
joystik (282 ) 1:54 pm, 7 Jul
4356. I'm soo jealous of you ladies having a good run
with the chemo - I kept asking my oncologist if I could take supplements and he said NOOOOOO! I wonder how different things would have been if I had taken them? Oh well, water under the bridge... ;o)
soniat-d (153 ) 1:56 pm, 7 Jul
4357. Sonia, your headache was probably from the
stressful incident at the shopping centre! That would be enough to bring anyone to a headache. Kids react in all sorts of ways when they are tired or sick, and sometimes we dont know stuff is brewing up until they do something outrageous or throw a wobbly, and then we discover other underlying things. I'm looking forward to seeing a pic of Dorothy the Dinosaur though!! I dont think you can ever give too many cuddles can you?? Lauren is almost 15 and believe it or not, she still likes to get in to bed with me for a Mummy cuddle!! No much room for 3 big people in our bed though now, but thats still nice isnt it?? Hugs to you and the wee girls.....
joystik (282 ) 1:59 pm, 7 Jul
4358. Sonia, it would have been much different I'm sure.
I dont even feel like I have had Chemo, and actually I asked the Oncologist is he had made a mistake and given me water!! He assured me he hadn't but also admitted that he hadn't ever in his time seen someone handle such a mega dose so well! Yay I win first prize! Don't really like this competition though. Could have been something else with maybe a holiday as first prize!! You have a quiet time while your girls are wont you???.....
joystik (282 ) 2:02 pm, 7 Jul
4359. Look likes i spoke to soon
had to go back this morning and change ryans dressing and tyler moaned and groaned of feeling sick and sore tummy (there goes my shopping) so we came home hes pale just not right.
bogeyi (482 ) 2:04 pm, 7 Jul
4360. Paula I so know the attitude you are talking
about, hes just had enough and is sick of being sick.Ryan gets like this to, and I also leave him on xbox.He will come around when hes ready and will be the same happy josh.I know its hard as you know hes hurting, I am thinking of you guys......hugs
bogeyi (482 ) 2:10 pm, 7 Jul
4361. Sorry to hear that Bogeyi....might need a wee
rest for a while. Keep him nice and warm and give him a hug from me. They must get so sick and tired of all this stuff to do with ilness and hospitals. I know I do and I haven't had much at all really. I was thiking 20 trip to Kew since March 14 was rather excessive though. I really feel for Ryan and you too Bogeyi....
joystik (282 ) 2:12 pm, 7 Jul
4362. hiya Joystik
as long as it stays away from Ryan im happy. How are you doing today??
bogeyi (482 ) 2:17 pm, 7 Jul
4363. Hi Bogeyi, I'm a box of fluffy ducks actually, but
feel guilty almost coming on here saying stuff like that when I know you guys are going thru so much. I said to Paula, I wish I could share their pain, these poor little blokes. I can only offer you kindness and lots of love and hugs, but wish I could do more to help you through all this. Yes you just have to keep Ryan well and happy for another few weeks. Honestly, bogeyi, I really dont have any side effects at all this time either. It has to be the supplements! How many times have I said that now?? Like a cracked record!! Take care of your self too wont you....
joystik (282 ) 2:29 pm, 7 Jul
4364. bumping for sonia
need to ask ya something..
bogeyi (482 ) 3:38 pm, 7 Jul
4365. Bogey & Joystik
Thanks Bogey yes he is sick of it I think. Also the dexamethasone has this effect on him. So we'll just ride this one out and be looking back before we know it. Poor Tyler, kids can often feel ok one minute and then crash the next, hope Ryan can avoid this one!Josh was just asking me how Ryans getting on. Joystik, you are so amazing. Keep up the good work. Have you looked up the lolly trader yet. See the name under my feedback we bought 5 lots - YUMMO!
paulaxx (77 ) 3:38 pm, 7 Jul
No one can ever get enough cuddles. Thinking of you xo oh and more oooooooxxxxoooooooo
paulaxx (77 ) 3:40 pm, 7 Jul
4367. Boop, Maewest, Landylass
and anyone else Ive forgotten just wanted to say thanks for your loving wishes and we are thinking of you too. Love and Hugs
paulaxx (77 ) 3:40 pm, 7 Jul
4368. hi paula
i love fizzy lollies..
bogeyi (482 ) 3:41 pm, 7 Jul
4369. Hi Bogeyi
Me too!!! Might have to place another order sooner than I thought.
paulaxx (77 ) 4:11 pm, 7 Jul
I have just stopped crying enough to type this to you. Firstly if you have caller display and a funny South Island phone number shows it was me. I am in awe of you!!! We just received the itinerary for our trip to Auckland. The letter said as you see Josh gets 2 fishing trips, one being courtesy of your friend Sonia - words fail us. We are SOOOOO excited - do you realise you are making all our dreams come true. Not just for Josh and Chris but really for me cos I get to meet you,spend time with you. Tears are falling as I type this - thank you, so much for your generosity and for being you! We cant wait and this has made my day,month,year!!! Thank you, did I say thank you!!! You are such a darling! JUST CANT WAIT
paulaxx (77 ) 4:24 pm, 7 Jul
4371. SONIA ROCKS!!!!!!!!!!!!!!!!!!!!!!!!!
THREE CHEERS FOR SONIA HIP HIP HOORAY HIP HIP HOORAY HIP HIP HOORAY Dances around the room cuddling Josh singing yipeee ((((((((((HUGS))))))))))
paulaxx (77 ) 4:25 pm, 7 Jul
for making me feel welcome, I felt a bit like i was butting in but I soooo feel for the little boys. I guess its coz I have 3 sons. Fortunately none have had cancer, but Ryan my 13 year old had encephalitus when he was 5 so was extremely ill for months and it took 5 years for him to recover.My other two are under specialists for different conditions. The youngest has a condition called Benign paroxysmal vertigo of childhood....they think, but hes so bad they can't be sure. Anyway he spends a month at a time with the room spinning, being sensitive to light and vomiting, it then clears up for about 2 months and then comes back. Hes been like this since he was 3 and hes 10 now. The reason i explained this is my kids did and do get very sick of being ill and they need to vent like we do, so like you I just leave them on the xbox and keep giving them a hug and saying I love you and eventually they snap back to themslves. You can never give a child too many hugs :))
janetmk1 (38 ) 4:34 pm, 7 Jul
4373. Paula that is so cool
You are coming up when we are in hospital I think....whaaaaaaaaaaaaaaa
bogeyi (482 ) 5:00 pm, 7 Jul
4374. Ha ha ha Paula!
The picture of you dancing around the room with Joshi makes my day - isn't that what life's about - making other peoples day?! I love it! Hey, thank my parent's in law - its their boat ;o) But yes, I did a bit of a sell LOL Glad you finally got the itinerary, I was wondering where it had got to ;o) It'll be Brent me and girls and your family and my parents in law (lovely peeps) - easy on a boat like that! We all can't wait either. Thought we'd bring fairy dressups for the girls to wear, games etc while the boys do their fishing - won't be too much fishing - leaving that to the pro the following day ;o) How cool is he too?! Will call you closer to the time and find out what else Cassie likes and Joshi too of course ;o) Will be awesome - wait till you see the boat ;o) xoxoxoxox
soniat-d (153 ) 5:11 pm, 7 Jul
4375. Hi bogeyi ;o)
Sorry have been away Vit C'ing - what is your question sweets????
soniat-d (153 ) 5:12 pm, 7 Jul
4376. Hi Joystik ;o)
A peculiar-looking parcel is on its way LOL. I did the first parcel, then later thought of other things to include, so did a second parcel and taped them together LOL looks most peculiar! Sorry - will take some unwrapping! Then, once done, I thought "Wait a minute, I should've just unwrapped the first one and done it again!" D'oh! Don't think the chemo brain is ever going to go away! LOL!
soniat-d (153 ) 5:15 pm, 7 Jul
It just keeps getting better and better my friend. YAY.
paulaxx (77 ) 5:24 pm, 7 Jul
So will you guys be on a no visitor rule? Im picking you will be???
paulaxx (77 ) 5:25 pm, 7 Jul
4379. Here's Dorothy The Dinosaur ;o)
http://images.trademe.co.nz/photoserver/94/23893994_full.jpg ...and... http://images.trademe.co.nz/photoserver/98/23893998_full.jpg
soniat-d (153 ) 5:27 pm, 7 Jul
4380. Was my next question too Paula - snap
*Waits for bogeyi*...
soniat-d (153 ) 5:28 pm, 7 Jul
4381. no way paula if you can pop into starship
i would love to have coffee with you (be the last palce you would want to visit) but if ryans ok and you want to meet im sure we could arrange something. Sonia are you still there will go and get something then be back in a tic to ask.
bogeyi (482 ) 5:31 pm, 7 Jul
4382. Yep still here :o)
I'm intrigued... ;o)
soniat-d (153 ) 5:33 pm, 7 Jul
4383. sonia I have a pass i won but cant go
and thought of you and those beautiful girls, its at the bruce mason centre, Tues 11th, 10am to see Cinderella for 4 people big or little. Thought the girls would like it.
bogeyi (482 ) 5:34 pm, 7 Jul
4384. Well I was thinking (jumps in here presumptuously)
that after out boat trip (we'll get back about 2 or 3ish) I could take the Riddell family (or some of) into Starship? If you wanted Paula... Could drop Chris and Cassie back at your hotle or elsewhere on the way... Brent could take the girls home with him...
soniat-d (153 ) 5:36 pm, 7 Jul
Sonia shes so cute :)))
janetmk1 (38 ) 5:38 pm, 7 Jul
4386. Oh my goodness Bogeyi
You honey! Yes! Absolutely! What time is it? Will reschedule my vitC... thats sooo lovely of you! Wow wow wow! *grins* Thank you!!!!!!!! Thank you!!!!!!!! Thank you!!!!!!!! The girls would soooooo love that! What a honey :o)
soniat-d (153 ) 5:39 pm, 7 Jul
4387. 10am sonia
if you go to ryans site our email address is at the bottom. I can post them to you.
bogeyi (482 ) 5:41 pm, 7 Jul
4388. Hi Janetmk ;o)
Hey, everyone's welcome here :o) Sounds like you have a lot on your plate too ((((hugs)))) I agree, there's no such thing as too many! Yep Em looks such a treat in the outfit, sooo suits her, it came with a mask and gloves too but she ditched them early on LOL
soniat-d (153 ) 5:42 pm, 7 Jul
4389. D'oh! You said 10am LOL *slaps forehead*
OK - thanks soo much! I'm off to the website now, gotta get back to my girls soon :o) Been on here a bit long!
soniat-d (153 ) 5:45 pm, 7 Jul
4390. Joystick, Bogeyi, Paula, Sonia
just a quick post to let you all know that I am thinking of you all. Sounds like lots of smiles are happening at the moment. You all certainly deserve it. Hope the boys are doing well today. Big hugs. Shirree
meridian1 (294 ) 5:52 pm, 7 Jul
4391. Hi everyone
Ive been working today...the start of my working week.My bloke has got the bot. I'm frantically sucking on kiwifruit etc and trying to avoid it!!Sonia, love the pics...so cute. I'm still cackling about your fun in the supermarket! Must admit I never had anything quite like that happen!
maewest (76 ) 6:01 pm, 7 Jul
4392. Oh .... hi and big hugs to you too Maewest
Naughty me for leaving you out!
meridian1 (294 ) 6:05 pm, 7 Jul
4393. Paula how exciting
for you all. When are you going?? Sorry you have probably said, but don't remember. Hope Josh is feeling better tonight. Poor kid. I can understand him feeling out of sorts...so hard. Bogey I hope Tyler is feeling better too. Man you are all going through such a rough time. (((Hugs))) to you all. And as for that Joystik...I can't believe how well you are feeling!! I too was told absolutely NO supplements!!It's got to be that. You go girl! Hey it would be cool to catch up with your brother.
maewest (76 ) 6:07 pm, 7 Jul
4394. Welcome Janetmk1
You have certainly had your hands full too. 15 years for you...there really is light at the end of the tunnel! I have not heard of the conditions that your children have. Sounds awful. Why do these horrible things happen to children!! Hiya Boop ( I love that pseudonym. Meridian, it gets hard when you are typing to remember everyone. Big 'Hi'to you. Hey it would be cool to share why we chose our usernames.
maewest (76 ) 6:13 pm, 7 Jul
4395. Mine is to do with eastern medicine
energy channels, chi, etc. My hubby (Kim on my profile) chose it. He is an acupuncturist.
meridian1 (294 ) 6:16 pm, 7 Jul
4396. Hi maewest, meridian
Josh has just had some pizza I made and he was quite impressed. Glad he ate something! janetmk1 i feel for you, sounds like your life has become normalising the not quite so normal too huh? hugs to you and your family
paulaxx (77 ) 6:19 pm, 7 Jul
4397. Hmmm mine isn't anything
so exotic. I was born with the middle name Myrtle. Put up with it for 50 years!!! Changed it by deed poll to Mae (after my Mum whose name was Mavis). Hence Maewest! Best $100 I have ever spent!!! LOL
maewest (76 ) 6:21 pm, 7 Jul
4398. Bogey & Sonia
I was just going to say, Nothing is going to stop me coming to say hi at Starship to both you and Ryan (if possible) Now Sonia has made that real too. Great idea Sonia. You have no idea what a difference you have made to my family tonight. We are all so excited. Love Dorothy by the Way!!! Just the cutest xoxo
paulaxx (77 ) 6:22 pm, 7 Jul
4399. That's good Paula
Always good when they start eating. ((Hugs)) to you
maewest (76 ) 6:23 pm, 7 Jul
I have never had a hundy
maewest (76 ) 6:24 pm, 7 Jul
first one. Whooppee
maewest (76 ) 6:24 pm, 7 Jul
4402. Congrats Maewest ;o)
Brent just called and we're going out for dinner - yay!!! Catch ya all later ;o)
soniat-d (153 ) 6:28 pm, 7 Jul
4403. WTG maewest
bogeyi (482 ) 6:29 pm, 7 Jul
4404. You must make a mean pizza
Paula. Eating is always a good sign isn't it. Hi to Joshi - have a good night you awesome little dude!!!! I love your new middle name Maewest - very pretty :-)
meridian1 (294 ) 6:29 pm, 7 Jul
4405. Hey thanks Meridian
I like it too. Mum was always called May for short so I just altered the spelling a little bit. She loved the change too..she had named me after her Mum who died before I was born.
maewest (76 ) 6:38 pm, 7 Jul
4406. Maewest - what a lovely tribute to your mum!
Special thoughts going out to you janetmk1. Well, I'm logging off for tonight - I get too addicted to the computer. A special big hug to all the children out there affected by cancer and other nasties! Nite nite sweet ones.
meridian1 (294 ) 6:50 pm, 7 Jul
4407. excuse me for butting in
but you're all so wonderful and friendly to each other! I really feel for you and the children who are sick. Heaps of hugs and love from me..
mitzi3 (2 ) 7:16 pm, 7 Jul
shucks, thanks mitzi3
bogeyi (482 ) 7:19 pm, 7 Jul
4409. Thank you all :)
All your warm thoughts mean a lot to me. I posted here to tell you how wonderful I think you all are and found myself really opening up to you guys. Thanx so much :) Like all of you I have my good days and bad.Jordan is having a good month this month apart from the flu :( he will get vertigo next month and then he and I live in the dark till hes well.The specialist is bringing in a drug from aussie for him to try but it will cost lots of $$$...worth a try though :)....most of the drugs so far have had really bad side effects. My oldest is 19 and was flatting for a year but returned home in January and quit his job as a computer technician.To cut a long story short hes been diagnosed with depression:/ and doesn't hardly leave his room anymore. SOOOoooo in between asthma attacks and almost every illness known to man they are good boys. I am quite relaxed with it all, as it has been far worse than this in the past, so I count my blessing and remain optimistic.
janetmk1 (38 ) 7:53 pm, 7 Jul
4410. Nite all
I hope you all sleep well tonite, I am off to watch a video and then search for these fizzy lollies you guys are talking a bout :))
janetmk1 (38 ) 7:56 pm, 7 Jul
Thanks so much for your kind words ;o)
paulaxx (77 ) 7:59 pm, 7 Jul
Thats really sad. It must be hard for you!!! Hope you enjoy your evening - fizzy lollies have taken me back to my childhood and the glohearts. Have a good night :o) off to have a lolly, acid drops too yum
paulaxx (77 ) 8:01 pm, 7 Jul
Isnt that great what Sonia suggested, told Josh and he said COOOOOOOOL, just have to make sure he is well!! Cant be bringing any different bugs up to you guys. Be so good to meet you. Hope you are having a pleasant evening - thinking of you? Did you have a better night last night? Hope so.
paulaxx (77 ) 8:05 pm, 7 Jul
4414. i hope he can come in the room
to meet ryan, will have to see what docs say.
bogeyi (482 ) 8:07 pm, 7 Jul
he totally gets that and so do I.
paulaxx (77 ) 8:08 pm, 7 Jul
4416. paula so do you have all details
i know you guys are going out with sonia and family (how exciting) are you also going out on a charted boat??how long are they sending you up here for??
bogeyi (482 ) 8:17 pm, 7 Jul
Got all the details today. Arrive 25th get picked up by a limo ;o) Classic.... then go to the Hotel - Quest. Sky Tower tour that afternoon. Sonia picks us up at 10am next morning (I hope thats right Sonia) for day with her family on their floating house I'd say (winks cheekily) We are so spoilt!!!! Thursday boys chartered fishing trip - Waiheke Island. Then zoo that afternoon. Friday Kelly Tarltons - then flight back to Christchurch, then Invercargill. I still cant believe all this. Sonia is so special to have arranged this extra bonus for us. What a sweetie.
paulaxx (77 ) 8:32 pm, 7 Jul
Gonna try for another early night. So Sonia hope that your dinner out was delicious. Thanks once again for making us all smile again. Nanite Bogeyi hope everyone feeling heaps better in your house. Sweet dreams all xo
paulaxx (77 ) 8:40 pm, 7 Jul
Lauren home tomorrow? Hope you are having a lovely night and have a good nights sleep. hugs to you and Kevin and Lauren xo
paulaxx (77 ) 8:41 pm, 7 Jul
4420. More like a floating apartment LOL
But it goes like the clappers (sp) ;o) Its a launch, with all the fishing mod cons - the olds caught 2 marlins last summer - in 2 days! Tee hee hee its gonna be cool :o) Just back from dins dins, girls in bath, we're running late tonight! But Em had a great sleep and is fabulous this avo, as is Lydia. Most enjoyable evening :o)
soniat-d (153 ) 8:43 pm, 7 Jul
4421. OK have a great evening all
and hope everyone gets a good nights sleep. Brent just told me he's got all of Season 4 of Felicity for me so guess what I'm off to watch tonight ;o) Have powered through the series in record time - love it!
soniat-d (153 ) 8:46 pm, 7 Jul
4422. Ohhhh, you guys are amazing! You are going to
have so much fun up there Paula. Sonia you are just the best for helping to make this trip so special for Josh and family. You will just love the Riddles, they are awesome. I wish we could come too and meet all you lovely Auckland people too, but one day we will. I will have my 3rd Chemo while you are away up there and will be halfway through the treatment then. This thread is so happy and positive, sometimes I read it and cry all the way through.....What wonderful people....hugs to you all...
joystik (282 ) 10:24 pm, 7 Jul
4423. Sonia, your wee dinosaur is the most gorgeous
wee dinosaur I have ever seen in my life!! I'm sure shes not the little child from St Lukes yesterday is she???
joystik (282 ) 10:25 pm, 7 Jul
4424. Hows things with you tonight Bogeyi?? Hows the
boys health tonight? I hope there has been an improvement to save the worry. So when you are in Starship, do you just more or less stay in there for the duration? Probably a dopey question really but something I know nothing about, and I can see you are an understanding person with people like me asking stuff. You have a good sleep tonight wont you..Its pouring with rain here now, so I will sleep well....tired after my long walk today too......
joystik (282 ) 10:29 pm, 7 Jul
4425. Glad to see you got the hundy Maewest.......
you are such a busy we person aren't you. You always seem to be working. Do you ever have the whole 3 days off?? Hope your man is soon over the bug and you dont get it while its lurking around. Interesting about your username? Mine comes from my very cheeky daughter! My middle name is Joy after my mum, but Lauren will often say (if she thinks she can get away with it) Hey Joystik.....whatever....so thats where it came from. Shes a bit of a cheeky monkey at times, but I love her to bits......
joystik (282 ) 10:33 pm, 7 Jul
4426. Hi Paula, what a super day for you guys today.....
Sonia is just gorgeous isnt she??? Another of lifes little treasures, just like you and your family. It will be such a wonderful time for you all. Glad Josh is feeling better tonight. Must have been the pizza?? Isn't it raining hard tonight, after such a lovely warm sunny day here. Hope your early night has gone to plan...Hugs to you all....see you tomorrow
joystik (282 ) 10:37 pm, 7 Jul
4427. Hi meridian, sorry I missed you tonight.....
you were well logged off before I got here. Hope you've had a good day too. I've been busy and went for a big walk so I'm a bit tired tonight. But that cant be so bad!! Hugs to you too and see you tomorrow.....
joystik (282 ) 10:39 pm, 7 Jul
4428. Hi janetmk, thanks for posting and your kind
messages to us on here. Gee you certainly have a fair bit on your plate too. There are so many illnesses and things to go wrong arent there. And its always so much more terrible when there are children involved. I feel so priviledged to have met up with all these lovely people here all fighting this MONSTER. Even better to hear of all the ones that have WON! Hugs to you and your family.....
joystik (282 ) 11:04 pm, 7 Jul
4429. Righto, its almost pumpkin time, so I better get
cracking and off to bed. Nite nite to everyone I havent already mentioned. Hope you all have a good restfull sleep and sweet dreams.......see you all again tomorrow.....
joystik (282 ) 11:06 pm, 7 Jul
4430. what a lot of happy people on here tonight
Paula that is wonderful for you and your family, to actually meet sonia was lovely but everything else on top is a real bonus you deserve it.Joystick what a wonder you are. Do Kevin and Lauren feel good taking the supplements? I seem to be getting later and later on here things will change soon I hope.maewest my mum's second name was May too. I have been Bettyboop all my life even my kids call me boop i like it too.tuahiwi is where the pa is I think. We were at Loburn when we went over I bought some rimu furniture from the factory there it is so nice.
boop2 (106 ) 12:01 am, 8 Jul
Gosh you have a load to carry too. another one with a positive attitude it seems to help. I don't understand what your boys illnesses are but all the best and hugs.
boop2 (106 ) 12:03 am, 8 Jul
4432. Hi sonia and girls
sounds like a better day today for you. That was lovely what you did for the Riddle family I wish you all a great time together and hope Joshi stays well.Em and cassie are going to have a good time together,look out cd's.Does anyone know how Briyanna is?
boop2 (106 ) 12:07 am, 8 Jul
4433. Hi bogey
love to your wee Tyler let's hope he is well soon.Hugs to you all at your house
boop2 (106 ) 12:10 am, 8 Jul
4434. Goodmorning to all you special people
Today isnt so nice weather wise, Joshi is staying in bed? Cough is terrible, so thats the best place for him. Hope everyone else is good today and I hope you all have a great day - back later xoxo
paulaxx (77 ) 8:56 am, 8 Jul
4435. Snap Joystik
my middle name is Joy too, and so is my youngest, altho she goes by the glorified name of Maggot more often that not.
sunbeamnz (72 ) 9:00 am, 8 Jul
4436. good morning all
joystik yes i stay with Ryan, on the kids oncology ward there are 3 bone marrow rooms, so although its on the ward only family goes in that part. Randal brings up kids to see us daily but when ryan has no counts i come out and take them downstairs for a play or we go for a walk.
bogeyi (482 ) 9:23 am, 8 Jul
4437. paula hope josh feels better soon.
I have to get out, Tyler must be better hes driving me nuts, ryan and I both have a cough but no other symptoms, hurts to cough but not chesty????Did you have a good sleep.