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3001. This is such a long thread now...3000
is GREAT!!
Glad Josh is back from hospital Paula, and you know whats troubling him. Hope he is better real soon. Hope your leg is better soon too Landylass. A bar managers course would be quite fun I think. How long does the course go for? Do you have to go to Dunedin to do it?? Seems it has worked out well with the radiotherapy. I went up to the hairdressers this afty and got the hair shortened considerably. All the blonde bits are gone now!! and its about the length of the wig I have chosen.
joystik (281 
) 4:22
pm,
19 Jun
3002. haha joystik I never
do things by halves! Its a cracka bruise because my blood counts are all hitting the pits at the moment. It is right the length my thigh, but not actually sore. The course is this Wed and the following one, each a whole day so hope the brain can cope! Just part of the paperwork we have to have and it seemed a good chance to get it done while I was down there. Its great you are feeling so good. Hope all goes well with getting the wig. I wore mine on Saturday and hated every minute it was on! It just annoyed me. I have got a little bit of hair back and just wear a beanie now outside in the cold. I even wore it to bed one night last week because it was so cold!
landylass (47 
) 4:30
pm,
19 Jun
3003. Landylass, the wig I have chosen is almost the
same as my hair only a lot shorter. probably about the length my hair is after todays cut!! I have this idea that I dont want to look different so that people don ask or say anything. But being a small place, most people know and most will rpobably comment anyway. And at the end of the day, it really doesnt matter too much..
joystik (281 ) 4:36
pm,
19 Jun
3004. Landylass,
Hi Aunty how you? In the wars by the sounds of things :( hope your pills help. cool to hear u had a good time at the wedding:) and your back online now too. i will send u a email. yes all stable at our house at the moment . so long may it last . you are starting radation this week so we will catch up before. hope you resting up after the weekend. good to hear the wee man joshi is ok :) love kiwikaz
3005. Thanks
Everyone for your lovely comments. Bumping for Sonia, where is she today??? Im a bit worried. Bogey - thinking of you and Ryan
3006. hello we are here...wow 3000 posts
we are not neutrophenic....wahoo its taken 9 weeks but we are 1.08 platelets 13 so will go back on thursday and he should definately need them by then. Paula glad your back home, hello joystik,boop,landylass,twinkies and whoever else i have forgotten.
3007. 
Bogey
Thats good news. Josh is neutrapenic but not too bad. Neutraphils .52 now chemo dose has to be halved till hes back up there. Darn. Weekly blood tests again. Blah blah blah. Have a nice night. Love to you
3008. 
here you go the best i could do
kids kept chopping my head off or it was fuzzy..http://images.trademe.co.nz/photoserver/50/23112450_full.jpg and http://images.trademe.co.nz/photoserver/15/23112515_full.jpg
3009. Hi everyone :o)
Busy busy day, sorry. Saw Dr Benji this morning before my treatment and he stunned me a bit by implying that there was no planned further radiation if there are new lumps there. I suggested they were just the old ones not blasted enough but he dismissed that possibility. He said surgery probably next. Cancer Society nurse visited me at home after that and we talked it all through. I'm feeling much better today thanks - back on track, sword raised ;o) Rest of day I've been on exercycle, then ironing, then grocery shopping.
soniat-d (153 
) 5:55
pm,
19 Jun
3010. 
There's so much I want to respond to
but gotta do the dinner thing now. Sorry about that. Later guys ;o) cxoxoxoxox
soniat-d (153 ) 6:00
pm,
19 Jun
3011. Keep fighting the battle
Sonia! Be thinking of you on Wed. Kiwikaz, my emails crashed again. Got to get the computer man back out. Mouth is heaps better tonight and managing to eat again so on the up now. Just seen the ice in Dunedin this morning on the news tonight .... grr might have to change my mind about spending 5 weeks there! Hope Joshi, Ryan & Brianna have a better week this week. Catch up again when I get home at the weekend.
landylass (47 ) 6:27
pm,
19 Jun
3012.
Hi all
This is awful not being able to respond - hugs to you all. Lydia is sick now - temp rising, so don't know when I'll get back - hugs to you all :o) xxxooo
soniat-d (153 ) 6:52
pm,
19 Jun
3013. oh sonia.......big hugs to lydia
hope she is feeling better soon.
3014. 
Bogey
Love the pics of you. I see where the kids get their good looks from. LOL with the tongue out - your hair looks very pretty. Hope Ryan is feeling good! Have a good nite.
3015. Sonia
I hope Lydia is ok. Thinking of you xo
3016.
Bogey
The smiley laughing was about the tongue by the way. Just had to clarify that!
3017. thanks paula thought i would put
a smile on your faces, hows josh.
3018. landylass
Hope your bruise is ok. Glad you had a good time at the Wedding and your mouth is a bit better. Be careful when you head off to Dunedin. All the best for your course and radiation. Thinking of you.
3019. Hi Bogey
Wicked cough and strange rash - those red spots! But playing with his sister right now like theres nothing wrong. He will crash soon and cough and cough.
3020.
Hi all would you believe Lydia's back to normal?!
Fastest illness ever LOL. Wish your boys could recover like that Paula and Bogeyi. How I wish xxx Sorry to hear about what happened with Joshi today - hope he manages to have a good night Paula (((((hugs)))))
soniat-d (153 ) 7:58
pm, 19 Jun
3021.
Hi Bogeyi :o)
#pokes tongue out back# LOL Nice to put a face to the name! xx
soniat-d (153 ) 7:59
pm, 19 Jun
3022. Lovely pic bogeyi, i printed it so now I got a....
wee gallery of all my trade me friends. Havent got Landylass or Boop yet but we got maewest, sonia, bogeyi and paula, so thats getting a wee collection. Ohh and of course I got all the kids already. Its just lovely to be able to see you all...
joystik (281 ) 8:01
pm, 19 Jun
3023.
Hi Joystik :o)
Your wig sounds great - hope you're happy :o) Is it a good fit? Has it been adjusted properly for your head? Makes it much more comfortable. I still wear mine heaps, love it, plus too cold to go without some covering for too long though I'm covering free at the mo ;o) Glad you made it through the first round so well - did you crash coming off the steroid? Hope you have a good evening.
soniat-d (153 ) 8:04
pm, 19 Jun
3024. Ha ha Joystik - snap!
I was just doing the same thing LOL!
soniat-d (153 ) 8:04
pm, 19 Jun
3025. glad you like it joystik
we all need some humour to keep us sane.
3026.
Hi bogeyi ;o)
I wish I understood what Ryan's results mean, its like Japanese to me. Guess I'll be finding out soon enough. Hope he's OK. ((((((Hugs))))) to Ryan
soniat-d (153 ) 8:09
pm, 19 Jun
3027.
Landylass :o)
Yikes - you sound like you're in the wars my dear. You've gotta take more care of yourself ;o) Will you still be online once you've moved to Dunedin for treatment? Its Thursday isn't it?
soniat-d (153 ) 8:11
pm, 19 Jun
3028.
Hi kiwikaz3
Thanks for posting. Glad to hear your mum beat the monster - very cool :o)
soniat-d (153 ) 8:13
pm, 19 Jun
3029. 
Oh kiwikaz3
Sorry to hear about your husband - glad he's living with it so well, positive attitude goes a long way. Life is for living :o) Can you give him a "hi-five" from me? ((((hugs to you both))))) xoxoxo
soniat-d (153 ) 8:15
pm, 19 Jun
3030. Hi Maewest, great to hear from you again
Love the pic - what great friends you look like - so how did you meet? Thanks for thinking of me, means a lot, same to you Paula and others :o) Just hate all the questionmarks floating around, but guess thats the new permanent reality for me. Probably much better than a definate negative, so thats my new attitude to it, if its not bad news, thats good ;o)
soniat-d (153 ) 8:22
pm, 19 Jun
3031. Sonia
Stoked Lydia is ok, maybe just a hot flush in sympathy for Joystik! Or you??? Thanks for thinking of us too. Gonna sneak off now to watch Desperate Housewives. Oh and I too loved watching that Felicity programme but lost touch with it ages ago. Hope she ends up with that guy, you know the one I mean. Catch you all later lots a love xo
3032. Gee sonia, that was a good swift recovery from
the young lady. Sometimes those wee bugs come and go like that. Much better for you without sick children though. Might have been like Paula said, a sympathetic hot flush for me!! I havent had so many in the last 24 hours or so, but the underlying nausea is there all the time. The wig didnt really fit at all well and that was why I went and got heeps cut off my hair. Now its about the length the wig will be when its on. Once it starts to fall out, Shelley the wig lady will cut it really short, and fit the wig for me. I do quite like it now, although much flatter look than I am used too. I cant see me as a person that will ever go out without it, so I will get used to it quickly. Shelley is going to style the front a little more for me too I think. She is just lovely, and has phoned most days since I met her, just to see how I am coping. Thats rather sweet don't you think???
joystik (281 ) 9:14
pm, 19 Jun
3033. Hi Joystik :o)
Hey you know with my wig it can look flat if left to it. I shake it upside down after I take it off and before I put it on, and then ruffle my fingers through it gently - gives it a good lift ;o) Just be prepared for the fact that your scalp may go really tender when your hair falls out - mine did - so it was no wig for a good month I think from memory - was glad I had the back-up headgear ;o)
soniat-d (153 ) 9:22
pm, 19 Jun
3034. sonia... ryan is needing less platelets and
blood transfusions and his neutrophils are climbing, meaning his body is producing these things in very small amounts but his marrow is pushing tylers marow out.We dont want any of ryans marrow there as there are high chances he will get leukemia so having 80% of ryan is not good for him.
3035.
Hi Paula :o)
Yeah I know - I was sure we were taking her to the docs after dinner - and *ping* she came right! I'm gobsmacked actually! Another Felicity fan eh?! We are so alike my friend ;o) Well I'm halfway through series 2 now and Noel is interested in getting back with Felicity but currently with another who's about to find out shes pregnant, and Ben has decided he wants back with Felicity again - so its anyone's guess who she'll end up with! I'm so addicted to it now LOL - watched it while cycling and then ironing ;o) Hope you have a good night and that Joshi sleeps well xoxox
soniat-d (153 ) 9:28
pm, 19 Jun
3036.
Thanks Bogeyi :o)
So is his marrow pushing Tylers out a bad thing? Hence the upcoming op? Sorry, I appreciate you explaining this to me :o)
soniat-d (153 ) 9:30
pm, 19 Jun
3037. Sonia, I found that with mine too, and Shelley
said you can put product in it if you want it to stay up more. Do you just wash yours on your head?? Thats how she told me to do mine, with shampoo and conditioner!! I wouldn't be surprised if mine isn't the same as yours except for a different colour scheme. Mine is more copper colours with lighter streaks. I didnt crash when I came off the steroids, and actually only took them twice post chemo. So far I havent taken any anti nausea medication, but the nausea is there 24/7, kinda like I imagine morning sickness to be?? Yes?? Is that how you found it?? I think the name of my wig is "Date". Nice name aye??
joystik (281 ) 9:32
pm, 19 Jun
3038. sonia, I might have to wear a wee thin beanie
under the wig if it annoys my head. I think my head is pretty tough, but maybe different with no hair!! So have you got a wee gallery of your Trade Me friends too? Nice aye. See you all tomorrow...nite nite.....
joystik (281 ) 9:36
pm, 19 Jun
3039. yep thats right......because tyler is a 5/6 match
ryans body can detect that and say hey you shouldnt be here and he pushes it out and his marrow re grows, that is why he will have radiation this time to completely supress his immunity and wont be able to fight tyler, we want 100% donor.
3040. Bogeyi that is so interesting. Something i knew
nothing about either, and like Sonia said, much like Japanese to me too. Its a big slow process then isnt it. So can just any random person be a 100% match or does it have to be family??? I'm off to bed so I will look for your reply in the morning and probably ask another 50 questions!!! Nite nite, bogeyi, sonia, paula, and everyone...and the boys....
joystik (281 ) 9:48
pm, 19 Jun
3041. you can have unrelated donor matches
where they search worldwide for a match, tyler is a 5/6 which they said is as good as, with a sibling donor you generally get less problems/side effects.
3042. How is everyone
mily to stay and my mother's 87th birthday. Hope every one is well and coping with our monsters. Keeping well myself at present but my thoughts are with you all. Interested in how you guys ar egetting along. Best of luck to everyone going for treatment.
icarus1989 (468 ) 9:55
pm, 19 Jun
3043. Hi Joystik :o)
No I don't wash it on my head LOL! Its a gentle wash in the sink! Is yours a $400 jobbie or a natural hair one? I never had a sensitive scalp either, it just did not like whatever was happening when the hair was falling out?! You'll have to show us a piccie of your new wig on! Don't worry what people think - my look changed COMPLETELY LOL ans aquaintances just thought I'd had a haircut LOL ;o)
soniat-d (153 ) 10:19
pm, 19 Jun
3044.
Oh my favaourite non-wig look
was to wear a light tight beanie and then a nice scarf over the top. The beanie kept the silk scarves anchored well on the head, and gave a bit of extra body so it looked like hair was underneath ;o)
soniat-d (153 ) 10:21
pm, 19 Jun
3045. Thanks for explaining that Bogeyi :o)
So sorry another op is required but glad the docs still have options to overcome the problems. While there are options there is always hope ;o)
soniat-d (153 ) 10:24
pm, 19 Jun
3046.
Hi Icarus :o)
How are you these days? Where are you at now? Good luck to you... Thanks for posting ;o)
soniat-d (153 ) 10:26
pm, 19 Jun
3047. hi paula and joshi
wishing you a speedy recovery Joshi you are having a bad time.Take care of your mum she is very precious. Hugs from boop
3048. Hi bogey and ryan
you look a wee bit cheeky bogey reminds me of my youngest son he always done that when getting a photo taken.love to ryan
3049. Hi joystick
You sound really great i am glad you are feeling so well. We had a beautiful day here but very cold the wind was coming straight off the mountains. lauren is in the best place tucked up in bed. Here is a photo of me finishing at my beloved op shop, it is the most recent. I am the old grey haired one sitting on the arm of the chair in the maroon jacket next to me is my sister. I see you have op shops on your emails. I worked there for nearly 8 years I still do the books but will miss the people. http://images.trademe.co.nz/photoserver/37/23128837_full.jpg They are such nice girls I worked with.
3050. Hi landylass
you love to knock yourself around. That bar course sounds good.Hope the radiation goes well are you nervous? Hugs from me for all your wounds.
3051. Hi maewest
you three look really good what nice slim figures. How is the CH CH weather it is hard for us to get over there because of the snow on the Lewis. Got to watch mitch (grandson)play rugby at some stage. Take care
3052. hi kiwikaz
That positive attitude seems to help. How are you coping? I wish you all the best for you and your family.hugs
3053. Hi sonia
you are still doing too much but I guess when you are like that it is hard to change.Love to Lydia she did make a quick recovery.What would happen if you have to have surgery again is it by the radiation? Hope you don't mind me asking.My sister in the photo with me is a breast cancer survivor but she will not talk about it.Love to you sonia and goodluck for this week.
3054. Hi boop2
No I'm having radiation now (its like a big xray machine but zaps the tumors with some kind of alphawaves or something (no idea LOL). Surgery will be your typical anaesthestist (sp?!) and surgeon with a scalpel. Lucky me :o/ !!! Its cool though, whatever get rid of the beast. What do you know of what your sister had done? Maybe I can fill in the gaps?
soniat-d (153 ) 9:54
am, 20 Jun
3055. Goodmorning
to everyone. Sonia - thanks for the Felicity update. Keep me posted. Boop, beautiful photo, what a gorgeous smile you have! Bogey its so interesting learning about what you are going through. Feel for you, does the radiation focus on a certain body part for Ryan or is it whole body??? We are ok today, Joshis looking better but a bit pale.Hospital say no need to do bloods on monday now so we are kinda left wondering if his levels remain low or ok? Also no need to halve chemo keep it at full dose - oh well they know what they are doing. Have a great day everyone.
paulaxx (76 
) 10:11
am, 20 Jun
3056. hi paula not sure about the radiation
as we didnt have it the first time and dont really want it, but understand we must.We are waiting for opur appointment so we can go and talk with them so they can explain the side effects.
bogeyi (482 ) 12:07
pm, 20 Jun
3057. 
Hi Paula :o)
Hugs to Joshi - does he have a main specialist in charge of his treatment, that you can ask these questions to? It must be awful wondering/not being sure that what you're doing is right. Is that how you're feeling? That was my take on it. Hope you're having a good day :o) xoxxo
soniat-d (153 ) 12:08
pm, 20 Jun
3058. Let us know how you get on with that Bogeyi
I feel like I'm a radiation expert LOL maybe I can help? My sideeffects are very few, little tired maybe (not as much as I was expecting from the way they carried on) and just the skin troubles, but then that was because they were treating close to my skin surface. The treatment I'm having now is deeper and my skin is sweet as ;o)
soniat-d (153 ) 12:11
pm, 20 Jun
3059. sonia can i ask a yucky question.... having
radiation in your case does it increase chances of getting secondary cancers.I hope its ok to ask feel free not to answer.
bogeyi (482 ) 12:15
pm, 20 Jun
3060. Sonia
You read me like a book. Yes we do have a main specialist - in Christchurch, cant really phone him. The treatment protocol josh is on is part of the Cancer Oncology Group. Based in the states, it is a new protocol, been used overseas so all direction comes from the states. We do what our hosp (Invercargill) tell us, they do what Christchurch tell them, Christchurch do what the States tell them. PHEW. I have a list of questions to ask, next time we have clinic - this falls when we come to Auck so wont be for a while now. i can find out by asking someone to ask Oncologist tho'. But really its in their hands. how are you today? My friend just posted me a bag of hard caramels and Terri Hatchers new book. Spoilt eh?
paulaxx (76 ) 12:28
pm, 20 Jun
3061. Hi Bogey
Now I can see your face in my mind everytime I type your username. How are you guys doing today... Bank manager coming here shortly to discuss us buying something ie small farm, normally I would be so excited. Things like this just dont mean what they used to..
paulaxx (76 ) 12:30
pm, 20 Jun
3062.
Yikes Bogeyi
Not that I know of! My secondaries started months before I started radiation, it was only after I'd just started radiation (a few days) that they became big enough to raise alarm. The radiation has shrunk my biggest lumps beautifully we believe - tomorrow will tell ;o)
soniat-d (153 ) 1:05
pm, 20 Jun
3063.
Hi Paula :o)
Our neighbour just turned up with a stunning bouquet of flowers - how sweet is that? Seems I'm being spoiled too ;o) Well that sounds like quite a chain of command LOL Good to hear its coming from latest knowledge overseas - I like that :o) Anyway, if you are concerned you should just pick up phone and ask - I've learned that the hard way ;o) Hope you're having a good day - off now for another Felicity fix while painting my nails then exercycling again ;o) See you all later :o)
soniat-d (153 ) 1:31
pm, 20 Jun
3064. Hi everyone
Well, it's good morning for me. The 'dog watch'supervisor who takes over from me at 10pm had to take his wife to hospital, so ended up doing a double shift. Got home at 7am!! When I came out from work there was thick ice on my car..couldn't even get the door open! The half hour drive home took me almost an hour!! On top of that dropped my cellphone in the carpark while I was trying to prise my door open! Fortunately someone found it an hour later and its at work waiting for me. It's still working. Amazing as I would have thought it would have been frozen solid!!Anyway I'm up now and it's a beautful sunny day. Life is sweet.
3065. Hope you are all having a lovely day
Are you feeling on top of things today Sonia. It's hard to keep the 'pecker'up all of the time. I met Sandra (on the left in photo) at the initial fitting for my wig. Delia I met while we were sitting next to each other at Oncology having the dreaded chemo. It was my 3rd treatment and her 1st. We have all become the closest of friends. Sandra has Hodgkins (or non..can't remember which)Lymphoma. She has already had 3 rounds of chemo and has to go for 3 monthly bloods. Landylass, I'm sorry but I had a giggle too at your description of falling over. Do hope your bruising is settling down and also your poor mouth. Ouch, that sounded sore. Good luck with you bar course and of course you radiation. I'm sure you will find that a doddle after what you have been through. I'm enjoying see ing all your photos. So lovely to put faces to the names.
3066. Ryan, Joshi & Briyanna
Hope you are all feeling good today. Big hugs to you all.Joshi hope all your spots have gone and your cough is getting better. Love and hugs to your Mums too. They are very special people.Joystik I cracked up when I visioned you washing your wig with it on your head. I don't know how you would do that! I did what Sonia did...in the basin with the shampoo then outside sitting on top of a tin to dry. Apparently you are not supposed to wash them too often..it's not good for them. Yip a good old shake before you put it on your head does the trick.Hope you are still feeling ok. Boop it must have been fun working in the Op Shop. I would love to do that.
3067. Hi all
there is no way I had the time to read all the posts. My mother has cancer and was given all the treatment last year. she has recently gone back for her regular check up and it has come back. Now she has a meeting this week at the hosp for herself and family members. I am so scared, I cant see this being good news.
3068. Oh Karma
that is not good news for you. What king of cancer does your Mother have? I know it is easy to say, but try and stay positive. What they can do these days is amazing. Big hugs to you.
3069. She has lympnode(sp)
and they have said that she cant have anymore radiotherapy as her body just would not handle it. I try very hard to stay positive. i just felt the need to talk to someone.
3070. 
sonia i am so sorry wasnt trying to scare you
in Ryans case with FA having radiation and chemo (but more radiation) they have high chances of getting secondary cancers as they have a breakage in there chromosones and the body isnt able to repair these damages. So that is why we need to go to transplant sooner than later again as FA paients also have high chances of developing luekemia and if that happens with FA the chances of survial are almost nil.Im sorry if i scared you i wasnt implying it could happen just wondered if anything was said we have been told already with the radiation and have read about it, goes with the syndrome.
3071. Hi Bogey
I'm sure you haven't scared Sonia. It is interesting (no, that's not the word I'm looking for!) to hear all about the different treatments. I can't believe what these children have to go through. Words just fail me.My heart goes out to them all. I think when I first found, out my first thought was 'Thank God it is me and not them'. I can only imagine what it must be like for you Mothers having to go through this. It's just not fair. CANCER SUXS!!
3072. Karma this a great place to
air your feelings. The support is amazing. I hope everything goes well for your Mum and your family. I think it is sometimes harder for the support people than the person going through it. Not a lot you can do but just be there with lots of hugs and love.
3073. Hi maewest, so is it 3 days off now?? Or will you
have to work while soeone is sick?? Hope not. The day started beauiful and frosty, but now its cloudy and much cooler. Shortest day tomorrow, so then it downhill to christmas again..... Shelley told me to was the wig about every 20 times I wear it or so, and she did say to wash it on my head!! Sounds funny really doesnt it. I just went for a walk round to the other house and had big ideas about helping Kevin with some painting, but oh no not today thanks!! Was almost sick with the smell of the paint when I opened the door. I'll try again another day perhaps. You have a good rest now maewset, you've been working too hard too.....
joystik (281 ) 2:43
pm, 20 Jun
3074. Thanks bogeyi for your pic...its lovely and like..
Sonia, I have you in my minds eye when I'm writing to you now. I printed all the pics off so I can see you all every day, and its rather nice I think. Most interesting all the information about Ryans condition and treatment. Such a lot to learn and know about all that isnt there. There seem to be so many side effects with all the treatments don't there, but hopefully the long term effects are better. That was one thing the Oncologist said about one of my chemo ingredients, was that it can cause other cancers long term in say 30 to 40 years. That didn't bother me in the slightest, so long as I get more years, I dont want an end date on my life just yet thanks. Hope you are having a ggod day....I think about you all lots of times and like others have said, just wonder how you cope with seeing this illness in your child. Hugs to you all.....
joystik (281 ) 2:49
pm, 20 Jun
3075. Hi Sonia, you sound much better today,...I felt
kinda sad and helpless for you for a couple of days. Tomorrow is wednesday, so you will have your mammogram and will know for sure what is happening and what course of action will be taken. The thing is now days there is so much that can be done, and like i always thought you could only have 1 shot at chemo, but thats not true either. I know a lady that has had 4 different chemo treatments now, and shes still going strong. So there is always hope within the medical people. That was lovely for you getting the flowers!! That was so thoughtful of the neighbour to do that. I got vegie soup from mine and that was lovely too, especially now it has turned cold. My friend is bringing another wig out shortly for me to try. I will send the 3 others back that I dont like, and keep my favourite one. I put it on before again and it fits much better now my hair is cut shorter. Hope you're not being too busy today....hugs to you too....
joystik (281 ) 2:54
pm, 20 Jun
3076. Yip 3 days off now Joystick
I woke up at 12 and still in my jamas! There's one day down the drain. Just sitting here in the sun-gorgeous. I don't know how you would wash the wig with it on your head...it would come off. I just dried mine off in a towel before putting it outside. Dries in no time. OH the smell thing. It all comes flooding back now. I remember my sister came over from Aussie for a month and was cooking my favourite foods. As soon as she started cooking I had to leave the room! And certainly couldn't eat it! I found platters of cold finger food not too bad and anything bland. Spicy food was out!! Strange thing I couldn't stand the smell of the toilet and was always scrubbing it! We have a septic tank & I was sure I could smell the drugs!! Nobody else could though.Cleanest it's ever been. LOL
3077. Hi Paula, hope things are betterat your home today
with Josh. So, like he hasn't got enough to cope with, so we just add asthma to the list as well!! Poor kid! At least you know now what the problem was though. Interesting about his treatment coming from the States. A lady I know in CHCH, with liver cancer and leukaemia, she was getting her treatment for her liver from the states too, and she is in remission now. She had 9 tumors on her liver and they were injecting chemo type drugs straight into the tumors, and all but 1 of the disappeared completely! Great news. Her Leukaemia is not cured but under control and her medication is regulated by blood tests. Its all so amazing when I think about 4 years ago she was so close to dead it wasnt funny, and now she is totally independent and doing mostly what other people do. There is definately plenty of hope out there for people to win this battle. Hope you have had a good afternoon with Mr Banker!! Anytime you will be out looking. Yes, funny how you prioritys and wants change isnt it!!
joystik (281 ) 3:02
pm, 20 Jun
3078. Oh paula, I forgot the hugs...........
and more hugs for you all....(not Mr Banker!!)
joystik (281 ) 3:03
pm, 20 Jun
3079. Yes maewest, the smell of the paint almost made
me go green! Kevin wondered what I was doing with my head stuck out the window. Because he's been painting in there for days, I dont think he could really even smell it any more. But, boy oh boy I could. Just put a roast of beef on for tea, and even that is pretty borderline.....got the fan going at high speed!! If you stay in your Jamas a bit longer it will soon be bedtime again and it will save getting dressed. Much like a teenager!!
joystik (281 ) 3:06
pm, 20 Jun
3080. Boop, yummy tamarillos, we had a tree of them
at a house we owned in Takaka, and it used to fruit all year round. I could always go out in the morning and pick a few off the ground. Wouldnt be any hope of them growing here I dont think. I grew one in Oamaru, but moved before it fruited. It had flowered though. So, are you basically frost free where you are?? Hope you are having a great day too. Hugs you you both....
joystik (281 ) 3:29
pm, 20 Jun
3081.
Oh Joystik
Come on - hes not tooo bad actually! ;o). Just kidding. Thanks here come some cuddles right back at ya. Hope the sicky feeling is better. lots a love to you and your family
3082. Hi karma, sorry your Mum is being given the run
around by this cancer thing. I have breast cancer and it had also spread to my lymphnodes. I havehad surgery to remove all the nasties, and have just started my chemo a week ago. After the chemo, I will have 3 weeks of radiotherapy, and then hormone therapy for 5 years. I am very positive that I can beat this thing, and the trick is to try and be as positive as you can all the time. Its not always easy, I know but it certainly helps. Hopefully there will be a good outcome to your mums appointment at the hospital. I'll be thinking of you all and sending you some hugs for you and Mum too.....
joystik (281 ) 3:35
pm, 20 Jun
3083. Joystik
It is really interesting about the types of treatment offered. When I was completely ignorant to all chemo/cancer stuff, I just thought it was all one thing. Just never had to think about it before. Its incredible to be given choices over which path to take. Given the fact that if we hadnt gone to the dr Josh only had 3 weeks if that, we went with the option they felt was best for us. Its new to NZ. I hope you are having a lovely afternoon. Its nice to know we have the support of the bank, I just cant think too far ahead, its still just one day at a time for me. xoxo p.s your wig sounds lovely
3084.
Maewest
You must be exhausted. Glad someone found your phone. Hope you warmed up quick. Thinking of you and thanks xo
3085. Good to have the money man on side Paula...
thats a good start. You have another season to go where you are don't you? Gee Paula, do you mean Josh only had 3 weeks total??? That is sad, so sad. So what if you .....oh no...dont go there.... Even with mine Paula, the Oncology nurse said the other day that without pretty severe intervention with chemo drugs etc, I would be on 'skid row' so to speak. Hardly bears thinking about does it?? So, I'll just have all the drugs, and more if they can find them and come what may, another 30 - 40 years sounds good to me!! And especially now that the sun has decided to re-appear! Oh...and that sicky feeling.....it never goes, even in the middle of the night, it is there. But, if you are busy, you dont notice it nearly so much. So.....KEEP BUSY HEATHER...only til the end of Ocotber. Are you warm today??
joystik (281 ) 3:42
pm, 20 Jun
3086. sonia and boop2
thanks for the hugs and hi 5. I have been out and about today doing groceries etc. my support carer come in for 4 hours so i get things done , because of seizures he can't be left alone. But i got home and he has wired up another speaker to his stero in the garage and blasting me to kingdom come. He loves music and the louder the better it seems. Its funny because the noise of kids and crowds etc get to him but music does not.Poor carer needed ear plugs but she was laughing !!! my my youngest home today with earache , she is so good at amusing herself since dads been sick. hes gone off for a sleep now so some time for her ( he usually sleeps 4-5 hours day.) anyway havent caught up with my aunty Landylass so am off to give her a ring. and give some of my time to miss 5. will be thinking of u on wednesday and wishing u the best. hope u all having a good day :)
3087. Landylass, hope you got to Dunedin OK? Take
care of yourself down there and watch the ice on the roads and paths. You already have the bruise of the year and don't need any more. Hope your course tomorrow s a lot of fun, and good luck for the radiotherapy. We'll be thinking of you .....hugs to you.....
joystik (281 ) 3:44
pm, 20 Jun
3088. Haha Joystik.
I'm dressed now. Have started vacuuming, done one room and time for a coffee...can't be bothered!!! Only have a small house too!The windows look better now the sun is going down!Who cares...what was that about priorities lol. I'll dig out a couple of photos for you..the shaving day and the wig. I had a little sofr velvet black hat that I wore at night (the head gets cold!) and sometimes I wore it during the day with a rolled scarf wrapped around it. It's just whatever feels comfortable for you. Your scalp will get itchy for a while and the wig just makes it worse. When I got brave, I didn't wear anything at home.
3089. I can relate to the music thing
Kiwikaz. I love it too. The local Cancer Society have a Music Therapy session in a couple of weeks. Think I might go to that. I went to hear Julian Lloyd Webber a couple of weeks ago. Haven't been to a classical concert for many years. It was wonderful...just got lost in the music. Will have to do that again sometime. Paula you will have fun looking for a new home once you get into the swing of it. Positive stuff for you all.
3090. Hi kiwikaz, nice to see you again today....
Glad you're having an OK day. Its been abit chilly out here, but nice again now. Good you have a carer so you can have time out during the day. Must be the time for bugs. My daughter 15 had the day off school yesterday, but was ok again today and went off happily to college. Tomorrow they come home at midday, something to do with stop work meeting I believe. Only 1 more week and its holidays again. We had so much planned til this happened!! Never mind, we will be off again as soon as I am better, early next year. Say hi to landylass for me, I just posted her a message. Hugs to you and your family.....
joystik (281 ) 3:55
pm, 20 Jun
3091. Thanks maewest, that all sounds really nice to
me. I'm really not very creative with hats and scarves and the like, but I guess If I cant wear the wig I will have to learn. I cant see me EVER going with nothing on my head. The thought of it makes my cry.....still!! Music can be very soothing to the soul I find. The concert you went to sounds superb Maewest.
joystik (281 ) 3:58
pm, 20 Jun
3092. joystik i wonder sometimes why us
i never let Ryan see me sad about what he has to go through, we have a good strong relationship and he knows I would do anything for him not to have the pain and hurt, the way i deal with it is fun we jump up and down on the hospital beds, we played indoor cricket in our room (created havoc) and you will always hear me say....if your counts are low today im going to bash you....his reply is no can you use the spikey stick today..this was so funny the first time they hraed it, the looks i got classic. So i tend to make it fun for him always saying gruesome stuff he likes and makes him laugh, at the end of the day my heart is breaking and if im not strong he wont be strong.
3093. Bogeyi, that is so true, and you really must be a
very strong and capable person to even be able to deal with this. But then I guess its like everything, once you've got something like this, you just have to deal with it, like it or not. I knw with me when I was first diagnosed with cancer and told Lauren, she just tried to pretend it wasn't true, and kept telling me that the hospital had made a mistake, and all that sort of thing. It was obviously her way of coping with the bad news, but now she has come to accept that what will be, will be, and not liking stuff doesnt make it go away, so you have to face up to your fears and be able to talk about it. Me losing my hair is a HUGE one for her though, (and me too really!!) and she just said last night, I dont think your hair will fall out Mummy!! (She's 15 nearly!!) Wishful thinking I guess. Hugs to you ....you are a wonderful supportive Mum.....
joystik (281 ) 4:22
pm, 20 Jun
3094. i have always told ryan the truth and what
will happen right from when he had his hand surgerys when he was little, i tell him what he needs to know and thats it, I feel this is why he is like he is I have never hidden anything from him or said it wont hurt so we have a great trusting relationship.
3095. Joystik
My daughter was the opposite with my hair. She (10 at the time) wanted me bald so she could paint my head. She was quite disappointed when I didn't lose it completely (so was I actually).
nztrader2004 (477 ) 4:39
pm, 20 Jun
3096. I am feeling a bit nervous today.
I had a breast cancer removed (& some lymph nodes) in April last year (lumpectomy) & 25 radiotherapy treatments. At my 6 monthly check-up, the surgeon found a small hard lump in my scar. Had a scan & biopsy & decided to have it removed as it was "pre-cancerous". On a scale of 1 to 4, (4 being bad) it was a 2. Had yearly checkup in April just gone & mammogram - all fine. On the weekend I found another hard lump in the scar, about pea size. Am seeing the specialist tomorrow, & she will do needle biopsy if she thinks it is of concern. I keep telling myself it is just an encapsulated stitch coming out, or something minor, but ladies, I am scared. Cross fingers for me - my sword is high!!
3097. Joystik
Yes thats what they said. 3 weeks and that would have been it. :0/. So like you we say whatever we need to fight this - bring it on!!! Have a lovely evening. xo
3098. Bogey
You sound so much like us. We had the stereo blasting in Josh's room, always laugh at something, never sit in the sadness of the place, it can really bring you down. Josh has asked some pretty curly questions that wee children shoudnt even have to think about. But like you honesty is the best policy and it has strengthened our trust too. I am so honest with him sometimes people get surprised. But this is yours and my reality isnt it. I feel for you with what you are going through you are doing a wonderful job! Glad we met on here!
3099. dize5
All the best for your appointment. Sending you positive vibes.
3100. x...
x
miked10 (227 ) 5:07
pm, 20 Jun
3101. dize5 big hugs to you
paula we to have had the curly question and im sure i know what it was, i answer honestly but never relating it to him in general.He has asked a few times can he die from this (parents worst nightmare question) i just say kids and adults can die from FA, but its good the docs are keeping a close eye on you and you are healthy when going into transplant hes all good and happy with that.
3102. Hey all. Heres an update on Briyanna.
I've pulled it from the update I just did on her website (www.caringbridge.com/visit/briyanna - don't forget to sign the guestbook hehe).
twinkies_pn (0) 6:05 pm, 20 Jun
3103. ...
We discussed with the oncologist the limp that Briyanna has developed and her tendency to tip-toe around, this may be a side effect of the Vincristine drug she was on previously. One symptom I had failed to notice is Briyanna has lost her reflex action (tap under the knee test). An appointment with the Physiotherapist has been arranged. Briyanna attended the Radiation simulation after the clinic. It all went pretty well although was long winded.
twinkies_pn (0) 6:05 pm, 20 Jun
3104. ...
When we got into the simulation after several 'rearrangements of position', forty minutes and one further tattoo later it was all over. Although Briyanna did complain about the hard bed (mould) she had to lie in. Briyanna starts her Chest radiation next Tuesday (think it must be eight days worth with the weekend off, as they don't work Sat/Sun).
twinkies_pn (0) 6:05 pm, 20 Jun
3105. ....
The Radiology Consultant was on leave so we didn't get to discuss the forthcoming treatment with him, or how this will work into the current Chemo schedule, we think this means the next Chemo will be delayed until after the Radiation treatments have completed, (they don't usually do both together)............ ANyway, off to read the thread! Finally have a moment to sit down and catch up!!!
twinkies_pn (0) 6:06 pm, 20 Jun
3106.
Boge's
Josh got given a book for kids with Leukaemia and it says that you can die from it. He said Mum is that right could I die from this. I said honestly yes SOME people do BUT that is why you have to have all the tests and medicine all the time to try and not let that happen. Then I left the room quick to find the tissues. He handled that really well. He has also told me if he does die he will be with the Angels and come back to visit. They are so precious arent they? We talk about death a bit so Cass and Josh both know that its nothing to be scared of.(Not implying anything directly of course) Well we try anyway??? Hope that makes sense. Its never in a morbid way.
3107.
Twinkies
Hi. Josh has Vincristine too and limps (also a side effect from a Stroke) and he tip toes too. Constantly reminding Josh to walk NOT on his tip toes. Good to hear how things are going with you - keep your chin up
3108.
bump
hugs to all
3109.
Hi Paula :o)
((((hugs my sweet))))) I'm kind of shocked that someone gave him that book if that was in it, without prepping you first - how bizarre?! Yes I have the same discussions with my girls - very similar actually. Lydia got a scrath on "her booby" yesterday at school and came home all upset saying she now has what I have. Boy that took some talking out! She's very sensitive to it at the moment, poor lamb.
soniat-d (153 ) 9:30
pm, 20 Jun
3110.
Good luck dize5 :o)
Hey, if you had a pre-cancerous one before - cool this new one could just be another. Glad you're onto it checking often "Early detection is the best prevention" ;o) (My new mantra) Best of luck with the mammogram etc :o)
soniat-d (153 ) 9:32
pm, 20 Jun
3111. Hi Twinkies
It amazes me how they can do those radiation markups on wee kids - the amount of mucking around they do, then making you NOT MOVE on that ghastly hard bed. Good on Briyanna for lasting it through! I seems that when I was at my markup they lay me out in a wierd crooked position (felt bad to me but they wouldn't let me move) so now every day they get me back in the crooked position - I hate it! Only one to go though ;o)
soniat-d (153 ) 9:35
pm, 20 Jun
3112.
Thanks Kiwikaz3
I too LOVE music and have to have it going a lot, when cleaning house, cooking.... music is the best :o)
soniat-d (153 ) 9:40
pm, 20 Jun
3113.
Hi to everyone else :o)
Sorry to who I've missed ((((hugs to you))))) I must go again now, finish tidying and lie down. Its a big day tomorrow, not just last day radiation and then the dreaded ultrasound but also I'm going to a work do in the evening with Brent. So trying to get house in order as MIL will be looking after girls here... won't go overboard though ;o) Will try and get on here and let you know what ultrasound shows, promise I will ASAP ;o) Nitey night all :o) xoxoxox
soniat-d (153 ) 9:43
pm, 20 Jun
3114.
Sonia
I am sneaking off to bed but had to post on here that my thoughts and love will be with you tomorrow. I have been thinking about you constantly. I hope you have a restful night sweet. Hugs to you, Lydia and Emily and Brett too sleep tight my friend. Sweet Dreams xoxoxoxo
3115.
Whoops
Who's Brett - thats BRENT!!!! I am tired tonight. nanite hun
3116. Hi sonia, sorry I missed you tonight. My friend
came out from town with 3 more wigs. I still like the 1 I chose first the best, but have kept the new ones for a few days for a play. Just wanted to say I would be thinking about you tomorrow and send you all the love and hugs to get through the day. I know what these appointments can be like, but I'm sure your outcome will be positive. Keep on smiling and be positive and you will get through this Sonia. You are such a great support to everyone on here, and I can never thank you enough for the help and love you have given to me. You are one of life's real treasures. Take care, sleep tight, and hugs to you all....xxxx
joystik (281 ) 10:20
pm, 20 Jun
3117. Hi everyone
I am thinking and praying for you all. Good luck tomorrow sonia. I am ready to fall in too bed now . Love to you all while I am having this big shift. So, so tired. joystick send me your addess and I will send you some tamarillo's. (((((((((((hugs)))))))))))))
3118. Boop, you rock!! I will email you with the address
lucky I was still awake to see that message aye. I am ready to fall into bed too actually. You have a good sleep and we'll talk again tomorrow. Hugs to you too....
joystik (281 ) 10:24
pm, 20 Jun
3119. Hi Paula, bogeyi, and twinkies, lovely to read
your posts. Honesty is the best policy always with children. I have never been faced with the type of issues that anyone of you have been, but if Lauren ever asked anything, I always told her the truth. You really cant go to far wrong if you do that. I just feel so much for you mums that are facedwith all this. I think about you all lots of times during each day and send you lots of hugs to help you through. Ohh....I send heaps of extras for your kids too, not just the sick ones but all the ones that are well and have to see their little brothers and sisters going through so much. I'm so proud of you all in my new Trade Me family. Sweet dreams everyone and I'll be back tomorrow...Bye
joystik (281 ) 10:35
pm, 20 Jun
3120. Loving thoughts
to you today Sonia. Keep us posted.
3121. Boop
Hope you have a lovely day today. Thinking of you. Take care xo
3122. Joystik
Hi. Hope the sicky feeling is not there today for you. You are doing amazingly. Thinking of you too. xo
3123. Sonia
love and best wishes for your big day. Paula and Joshi xoxo
3124. Bogey
Hi. Hows it all going at your place. Thinking of you. I might have to grab the xbox controls today I think and escape into Josh's world. LOL Have a good one
3125. Landylass,Maewest, Twinkies,
and anyone else I might have forgotten - Hope you keep warm and have a nice day. Love and thoughts xo
3126. Good morning everyone.....going to be a bit of a
mucky day weather wise I think, but thats ok cos I'm not doing anything outdoors. Woke up with a really good headache at 5.30, got up and had a drink of water and went back to bed, went to sleep, and woke up with it slightly better at 7.00. Almost gone now but still got the nausea, but thats not so bad. I am going to study today and go for my assessment early next week so I can do some work!! Hope you all have a good day, keep warm and will talk again soon. Enjoy your fun on the x-box Paula, and good luck for your appointment Sonia. Will be thinking about you.
joystik (281 ) 8:54
am, 21 Jun
3127. Hi Boop, hope you've got the hatches battened
down on the coast. You're supposed to get very heavy rain today. It will fill the towns reservoir I guess, so its not all bad. Hope you have a good day too. Take care.....
joystik (281 ) 8:56
am, 21 Jun
3128. Hi sonia,paula,joystik,landylass,boop,twinkies
hope all goes well sonia today.Paula enjoy the xbox.Joystik hope your head is feeling better now.
3129. Hi Sonia -
thinking of you today and have a wonderful night out tonight!
solarouge (46 ) 9:38
am, 21 Jun
3130. Bogey
How are you today. Josh is watching a video now so im not required for the xbox yet tee hee Been baking for my friend instead. I was thinking about you the other day and all the meds you have to give Ryan, thats a lot you are amazing!!
paulaxx (76 ) 10:19
am, 21 Jun
3131. Joystik
Poor you head aches are yucky!!! mind you so is feeling sicky. Hope you get your study done. Think your incredible for being able to concentrate!!! Oh and forgot to answer your question the other day - yes we have one more spring here so May 2007/1st June we will be moving on. Just putting our feelers out as to what we are able to go to etc. Hope you are keeping warm xoxo
paulaxx (76 ) 10:22
am, 21 Jun
3132. Hi paula, do you think you will stay within the
southland area?? Or move away? Its a big decision isn't it. I guess value for money wise, this is still the bestvalue in NZ down here, but shhhhhh.....dont tell everyone, or they will all want to come. We moved from Diamond Harbour (on Banks Peninsula) to Nelson, to Oamaru, to here last may, and really like it here. Not that we didn't like any of the other places we lived, but here there are more opportunities to things other than work to support a big mortgage!! My family mostly live round Nelson/Golden Bay area, and sometimes I would like to be nearer, but up there is very expensive too. We will be here for a while I would say. Got my appointment to have the Portacath put in today. It is for 30th June, but now I have to phone oncology dept, cos they dont want it done that day... as that is 14 days after chemo when my immunity will be at its lowest. Hopefully they will be able to do it the next week probably the day after my next chemo, july 7th. They only do portacaths on Fridays!!
joystik (281 ) 10:33
am, 21 Jun
3133.
hi joystik
oh that will be good to get your port in. Hope they can sort it sooner rather than later for you. You dont have to stay in do you? Josh came home that night. We would like to stay down here definately. Like you say the dollar goes the furtherest here. Sometimes we think about Whitianga, I would love to live in the Nelson area. Lots going on up there and the climate...YUMMMO. But this is where we have to be right now. So something will turn up thats right for us. My mum is talking of moving closer??? I am such a sun worshipper, its a bit hard to get used to the cold! Are you managing you sicky tum tum? And headache gone?
paulaxx (76 ) 10:41
am, 21 Jun
3134. 
Sh#t!
Just got back from ultrasound - no good news I'm afraid. Where once there were 8 lumps now there are 12 - biggest 3cm!!!!! Thanks everyone for wishing me luck. Off now to ring my specialist and see what her first thoughts are - may have to wait till everyone has seen the results. Grrrrrrrrrrr Bugga........
soniat-d (153 ) 10:48
am, 21 Jun
3135. Hi Joystik and Paula
Thanks for your lovely posts - I really appreciate it - had my cry feeling quite strong now. At least my gut feel was right - I could feel them on my chest wall - know the feeling now.
soniat-d (153 ) 10:50
am, 21 Jun
3136. Oh Darling
Sonia. You know your body so well!!!! That is so S****y!!!!! So glad you are so proactive with this! Keep fighting hun! We are here for you when you need us. Lots a love xoxoxoxxoxoxoxxoxoxxoxoxoxoxoxoxoxoxoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxo xoxoxoxoxoxoxoxoxoxoxoxoxoxooxoxoxoxoxoxoxoxoxoxooxoxoxoxoxoxoxoxoxoxoxoxoxo.......
paulaxx (76 ) 11:12
am, 21 Jun
3137. Sonia,
that doesn't sound like good news at all. Be strong, stay positive and know that there are alot of people who are thinking and praying for you. Keep your sword high, fight the fight and rest assured that you are doing a great job.
luke_83au (2 
) 11:14
am, 21 Jun
3138. Thanks guys :o)
I'm feeling pretty OK ready - The guy who did the ultrasounds said to me "don't give up yet!". I'm not, I'm just frustrated and weary right now, you know?
soniat-d (153 ) 11:17
am, 21 Jun
3139. So...
I rang my specialist to see what her first thoughts were - she wanted to see the results. She suggested maybe the lumps have died inside and the rest has gone necrotic but given there are new lumps.... we can't be quite that hopeful (also, didn't look like that on the screen). Have booked meeting with her for Monday 11am and the CT scan has been brought forward to ASAP. (To quote Lydia...) Drats and Bothers! Don't hear any fat ladies singing yet though... I will fight fight fight!
soniat-d (153 ) 11:37
am, 21 Jun
3140. Oh Sonia, that wasn't what I wanted to hear either
but there is still plenty that con be done so thats the main thing. I just feel so much for you through all this. You are so on to it and it just keep chucking more up for you to have to be even more on to it. But, you are a fighter and a survivor, and although this is CRAP, you will get through this and will win in the end, I know you will. Just don't really know what to say to you. We are all out here for you and love you to bits, and are just willing this to all go away for you. Just makes me cry to think one person has to be dealt it out like this. Take care and warm hugs Sonia xxxxxxx
joystik (281 ) 11:48
am, 21 Jun
3141. Paula, I rang Oncology about the port, and they
to go with the June 30 date, but I will have to have loods on the wednesday, just to see, and if they are too low, they will either cover me with antibiotics or put me on the acute list for the following week. The ports are only done fortnightly on a friday, not weekly. But they do have an acute surgery list in the in between week. I told her about the nausea and the headache, and she said to take the Maxolon regularly and not put up with nausea!! And take a couple of panadol for the headache and see if it goes. Might have been the way I slept, cos I took no panadol and it went!! I asked if the side effects would get worse with successive treatments, and she said, NO, the first one is the worst usually. I am so pleased. Just the hair thing to get through and I will be fine. You been on X-box yet??? Any snow? Its a lovely day here now...
joystik (281 ) 11:53
am, 21 Jun
3142. Oh Sonia
That is just what you didn't want to hear (or us either!). I just don't know what to say. At least I guess they in the early stage and they can get on to it. Does that mean surgery? I guess you won't know any more until your next appointment. Big hugs coming your way XXX
maewest (75 ) 12:11
pm, 21 Jun
3143. Drats & Bothers
I do like that although I can think of other unprintable words that I would rather use!!Hope your headache has gone now Joystik. I woke up with one too but that is just an overtired one. I was in bed for nearly 12 hours. I have only been up for an hour.Catch up time. Feel much better.Hope all the kiddiewinks are having a good day.Paula it must be hard living in the cold when you are used to warmer weather. Mind you, it is absolutely freezing here today. Think the forecast of snow may be right. Off to get the thermals on. Have a lovely day everyone XXX
maewest (75 ) 12:20
pm, 21 Jun
3144. Joystik
Good take her advice and dont put up with any of the side effects if you dont have to. Josh is sor tof asking for pain relief now and when he does I know he needs it. no snow here, but there was a couple of hours ago at the run off where the cows are. Glad I was here by the fire with Joshi. I had a quick go witha snowboarding game with Josh (appropriate for the weather) but my girlfriend popped in. Will go and be with Josh now. Take it easy. love Paula xo
paulaxx (76 ) 12:43
pm, 21 Jun
3145.
Maewest
Hi, I do think about the warmer weather probably too much!! I just have to wrap up and keep busy.
paulaxx (76 ) 12:44
pm, 21 Jun
3146. Sonia
Just wanted to send you a ((((((((((BIG HUG)))))))))) XXXXXXXXXXXXXXXXXXXXXXXX Bless little Lydia - darling wee girl.
paulaxx (76 ) 12:46
pm, 21 Jun
3147. Just been to browse your online diary
thank you for sharing your story, your honesty will certainly help others who will be facing a similar situation. It must be wonderful to feel so many 'cyber hugs' heading your way! Lots of love
3148. Thanks everyone :o)
Im OK really - I knew before this really (hence the poem) dealt with it then. Booking my CT now...
soniat-d (153 ) 1:08
pm, 21 Jun
3149. OK so booked the CT for tomorrow afternoon
2pm - Just gotta work out someone to look after Emily then. At least this means we'll have all results on Monday which will be good. I'm thinking I want them to cut my chest wall out - rpelace it with a metal plate I can be the bionic woman LOL. Lets see what she thinks of that proposal!
soniat-d (153 ) 1:15
pm, 21 Jun
3150. It came out lovely and sunny for a while but is a
bit dull here right now. I actually dont find the weather in winter a lot different from Nelson to be honest. And it is warmer here than it was in Oamaru in winter. I actually not too bothered by weather - like Billy Connolley said"thers no such thing as bad weather - its wrong clothing!!" If its cold turn the heater up or put more clothes on. Took the anti nausea pill and the nauseated feeling was gone within 15 mi utes, like majic, so I will take them 4 times a day now if I need them. Lauren will be home any minute, only 1/2 day today on account of a PPTA meeting or such like. Seemed like a bit of a waste of time running the buses for 1/2 day. Off for a walk to post the Hospital admission form. See you all later.....
joystik (281 ) 1:15
pm, 21 Jun
3151. So glad I got demanding with Dr Benji
If I has it his way, none of these scans would have happened for another 5 or 6 weeks ?!
soniat-d (153 ) 1:16
pm, 21 Jun
3152. Hi maewest, hope you're having a quiet day off.
Do you have any snow yet? I believe there is some up canterbury way somewhere. They spoke about it on the news but i wasnt listening very well. Keep your thermals handy just in case, and enjoy your 3 days off. Got any fun things planned?? Hugs to you.....
joystik (281 ) 1:21
pm, 21 Jun
3153.
MAMMOGRAM everyone!
"Early detection is your best protection"
soniat-d (153 ) 1:21
pm, 21 Jun
3154. Good luck soniat-d. We are all thinking of you.
Just found out yesterday that a really good friend of mine (37 with four young children) has bowel and liver cancer. Not looking good - but she's strong and is adament that she will fight it as hard as possible. Her hubby is devastated.
beagle12 (53 ) 1:22
pm, 21 Jun
3155. Oh Sonia
Bugger, bugger, bugger. Big hugs to you. Sword up!!!
3156.
Hi Joystik glad the pills worked
I used the natrural ones (white and green box) a lot, kept using them after I stopped the others for sometimes up to a week. Sure did the trick - can't remember the name, it was one of the three you were given...
soniat-d (153 ) 1:23
pm, 21 Jun
3157. All except fot Me sonia!! No more mammograms here
But yes its something I promote every where I go too. Early detection is the best protection.
joystik (281 ) 1:32
pm, 21 Jun
3158. I know of so many woman in there 40's and 50's....
that have never had mammograms, and I find that incredible when there is really quite a lot of publicity out there about Breast cancer. Some people even with family histories of cancer - it defies logic actually. I had the mammograms and it still got away on me. Hardly bears thinking about what could have happened if I hadn't been on the lookout for it. Fight, fight, fight Sonia, we all know you will....
joystik (281 ) 1:35
pm, 21 Jun
3159. I know Joystik
A good friend of mine has a HUGE family history of it, OK she's my age but still no mammogram! Even after seeing what I'm dealing with. Fear is all I can think of, but the thing to be feared is not finding a lump, but finding it too late!?!
soniat-d (153 ) 1:50
pm, 21 Jun
3160. Sonia
I am sure this morning will have been quite tough for you.. I am one of many who will have been sharing your company while on this mission to defeat the big C ... although we are mostly quite distant in a physical sense it is the presence you have here on this MB that makes me feel as close to you as any good friend could be ...You show such a tough fighting spirit ( you have a great sense of humour as well !!!).... you are an absolute inspiration... now please please settle back into your strongest fight mode you can find and concentrate on ridding that BC bug from your body ...I know we all want to help... and if there was any more I could do apart from writing these few lines of encouragement to you... then I would do it ... you are in my thoughts and prayers .. sending you all the 'stay strong' wishes I can ...
farmerlloyd (23 ) 2:07
pm, 21 Jun
3161. sonia.
bugger, please remember there are lots of people out here praying for you, for your courage, your strength and most of all healing. keep fighting and you are right it is never over till the fat lady sings. keep rested and recoup blast the music and gather your strength. hugs to you . from me and hubby.
3162. sonia im sorry about the bad news today
You go girl!!!I love your positive attitude we may have different cases but we are all fighting the same battle...If you want to talk or vent or yell i am only 35mins away or we can meet up somewhere for coffee, you only need to holler and i will come running my friend..xxxxxxxxx
3163. Sonia
I'm 24, and about 10 years ago never knew anyone who had Cancer. 10 Years on, i've had friends parents pass away, family members and friends develop this nasty demon. My thoughts and prayers are with you. Keep strong!
caroline1981 (14 ) 3:16
pm, 21 Jun
3164. havent posted in here before
sorta avoiding it, but my thoughts are with those doing the Red Mile. My sis has cancer she had breats cancer dianosed first now she has it in her liver she is terminal. Ive been struggling today to accept it all im about to loose another sister and i dont want to, ive had so many other things going on lately i havent taken time out for thiss event properly and ive had a bit to much to drink LOL oh well a few ours of numb bliss. Well all i can say is yes cancer sux but mostley for us who are left behind in the process of it all wish it could be different but it cant.
3165. The thing is everyone HAVE A MAMMOGRAM!!
For every case that is detected early, there is another great survival story. And another thing, just because it is a lump, that doesn't mean its cancer. It can be all manner of things, but you have to be on to it early and get it sorted. The cure rate for breast cancer is really high and in fact one of the highest for any cancers that you might be able to get. We are all in this big battle together, and we will WIN!!!
joystik (281 ) 3:30
pm, 21 Jun
3166. wasnt for my sister
but yes get yorself checked if unsure cos the alternative sux
3167. No Butacup, it wasn't for my Mum either....
but theout come for most people now days is very good, so long as it is discovered early enough. HAVE A MAMMOGRAM. Early detection is the best protection. Cant be said too often I'm afraid.
joystik (281 ) 3:51
pm, 21 Jun
3168. 
bloody hospitals
kirsty just bought the mail in and i have an appointment for June 21 at 10.30am with the radiation team...arghhhhhhhhhhhhhhh you would think that when they are making an urgent appointment (as my nurse spoke to them on monday) that they would also ring in case we dont get the mail on time...vent over
3169. oh Bogey
Thats just rude I reckon. Good on them (CAN YOU HEAR THE SARCASM).
3170. Hi ladies
Saw the oncologist today to get my lump checked, & there are 2 lumps now. I had a scan this afternoon, and the radiologist got a second opinion & they both think it is O.K. They think one lump is a tiny cyst & the other just thickening of scar tissue. I see the oncologist again tomorrow & she may or may not do needle biopsies. So I am much relieved tonight.
3171. Sonia
Thinking about you, hope you are having a nice night out. Bestest wishes for tomorrows scan. xo
3172. Hi everyone - not going out ;o)
Brent is - its a work quiz night in a bar, just wasn't that interested in it - want to put my girls to bed and give them cuddles. I'm not down, just have certain priorities on days like this ;o) Thanks for all the kind wishes everyone - workin' on that bubble Paula ;o)
soniat-d (153 ) 6:35
pm, 21 Jun
3173.
Thats good news dize5
If in any doubt get a biopsy done - just to be sure. Will they excise the lumps anyway?
soniat-d (153 ) 6:36
pm, 21 Jun
3174. Geez bogeyi
What tossers at the hospital doing that?! Slack, man... have you managed to reschedule? They owe you bigtime!
soniat-d (153 ) 6:38
pm, 21 Jun
3175.
Sorry to hear that buttacup
I certainly hope you're mammogramming regularly. Finding those nasty lumps early makes ALL the difference. Wish I had!
soniat-d (153 ) 6:39
pm, 21 Jun
3176. Hi beagle 12
Good luck to your friend (((((hugs)))))) to her. Good to hear shes remaining determined ;o)
soniat-d (153 ) 6:40
pm, 21 Jun
3177. by the time we cleared the mail it was 4.30
so was pretty mad, rand them and guess what havent heard back from anyone yet.
3178. Thanks Farmerlloyd and dize5
Very nice posts, thanks for taking the time to say all that farmerlloyd, that was very nice of you. I certainly am determined, just wish the docs could find a sword that works?! Got my mental one up in the air though ;o)
soniat-d (153 ) 6:42
pm, 21 Jun
3179. Hi Joystik :o)
Hee no mammogram option for me there either LOL - The mamm machine was broken at the place today, and they said "lucky you're only here for an ultrasound!" and I said "hey, nothing left there for them to squeeze! LOL Oh BTW they did ultrasound my remaining boob and thats still all good. Hey thats something ;o)
soniat-d (153 ) 6:44
pm, 21 Jun
3180. Yep bogeyi
They've all pretty much finished by then. Oh well, hound them tomorrow morning! Make them bump someone else? Good luck :o)
soniat-d (153 ) 6:46
pm, 21 Jun
3181. Hi Maewest
I'm hoping for surgery at this point but I dunno.... lotta lumps there, pretty deep... man, I hate that I can feel them, last few days I was thinking "Hey, maybe its the scar tissue from radiation", etc now I know its different. But keeping my mind off it ;o) OK must get back to things...
soniat-d (153 ) 6:48
pm, 21 Jun
3182. sonia dont forget my offer of coffee
if you ever need it.
3183. Absolutely bogeyi ;o)
I don't know how to contact you - can you contact me?
soniat-d (153 ) 6:53
pm, 21 Jun
3184. contact email on ryans web site any time just
holler if you need some venting or maybe school holidays whenever i am here for you. When ryan went to transplant last year we asked what is the 1 thing he wanted when he came out, it was a real mini dirt bike he hung this under his telly in his hospital room and told everyone this was what he was going to get, this was an insentive for him (although he never knew this)and yes he got it and loves it but cant ride it at the moment with no platelets.Well round 2 and have offered 1 thing again as i feel this makes him fight with all hes got.......guess what he wants
3185.
Oh Bogey
Dont do that - what does he want.....
3186. Hi Sonia
Your such a sweetheart. Got so much on your plate yet you never forget to thank anyone when you pop in here. Hope you are having a nice evening????
3187.
OOOOOOOOOHHHHHHHHHHHHAAAAAAAAAAAA
BOGEY CAN YOU HEAR ME CALLING YOU.... Tell me I want to know what Ryan wants....
3188. 
OKAY
MMMM, a baby brother or sister??? What about a trip to Disneyland??? UMMM I dunno cant think straight
3189. 
paula hush your mouth nooooooooooooo
babies, for that im going to make you guess a couple more times.mwhaaaaaaaaaaaaaaaa
3190.
OH Man
A puppy....
3191. 
UUUMMMM
A visit to your new friends in the snow down in Gore. Oh thats it isnt it I GUESSED YEEEE HAAAAA. Come on DOWN
3192. yep your right
love the second choice more maybe i can sway him, but yes a puppy
3193.
Oh Classic
What sort???oh thats such a lovely idea. MMM that was fun. Your welcome down here anytime... our puppy has just been out in the snow. Little rascal
3194. well kids have been wanting a dog for ages
and we kept saying NO, but in the back of our minds we were going to use this as a tool for ryan so he has something to look for.It will have to be a small dog, prefer one that dosent malt everywhere and good natured......we have alot of homework to do and look at all breeds.
3195.
Thats
neat. We did the same with our latest edition. Hís pic is on my profile. Doesnt malt,smell and is really the coolest little guy. he loves the kids to bits and they him so all round its lovely. Have fun choosing.
3196. paula i have seen your gorgeous wee pup
what breed is it.Ryan told me hes thought of a name (dont know how serious he is) but he said marrow, I said it well it appropiate (sp)
3197. Bogeyi, a puppy is a lovely Idea for Ryan......
It give a small boy lots to look forward too doesnt it, and they can grow and play together. What fun, how neat. The hospital are a bit of a right off for sending tha appointment late arent they?? Make sure you get on their case, and remember its the squeeky wheel that get the oil!! I got my admission form to have my portacath in today. The appointment is for next friday, and the envelope was marked urgent and fastposted!! HELLO!! We are only 35 minutes drive from the hospital so fast post doesnt get it here any faster!! Strange people out there arent there??
joystik (281 ) 9:08
pm, 21 Jun
3198. I think
that is such a cool name and very appropriate. He is a Bichon Frise. With a tiny tiny bit of Maltese.
3199.
Hi there
Hi Sonia, I'm very touched by your emails. I'm from Ireland and we have our fair share of Cancer too, however we can trace alot of it back to the fact the there are Nuclear Plants in the UK very near parts of the east and north of Ireland. I live out in West Auckland and can't believe those pylons are allowed soooo close to residential houses...mostly Housing NZ, even though reports etc...say there is no link I believe there is and would love Housing NZ to relocate their head office beside a sub-station. Anyway enough of my rantings, I truely hope and believe you will get better as you have an unbelievable positive mental attitude. Take care of yourself. Helen :-)
3200. Hi Sonia, you're such a ROCK aren't you?? You
have determination like no one else I know. And good on you. It gets you where you have to go. I know if you sit and wait for things to happen, they just dont. And sadly its mostly political, and to do with budgets and funding. Nice you're having a quiet evening in with the little girls tonight, thay will enjoy that too. I'm just having my hot black currant drink and then off to bed I think. I feel so much better since I took that Maxolon earlier and quit that nausea. Now its like othings happening at all...GREAT!! Hugs to you Sonia....I'm thinking about you.....
joystik (281 ) 9:13
pm, 21 Jun
3201. thanks joystik we are at hospital tomorrow
so will chase them up, paula are they good natured dogs will show ryan the pic tomorrow.
3202. Hi Paula, did you really get more snow today???
The afternoon turned out so ,lovely and sunny here. I went for a walk up to the shops to post some letters, and decided I better rug up warm, and almost roasted myself instead. It was 16.4deg outside when I got home, and I had shoes, socks,jersey, scarf etc. Looks a bit crappy up Canterbury way again though. Your puppy is so cute Paula. Will he grow much bigger than he is now? I quite like those Schnauzers too, but don't know anything about them at all. Hows Josh tonight?? Hope he's feeling much better. Hugs to you all....
joystik (281 ) 9:21
pm, 21 Jun
3203. Bogey
I love small dogs. He is the nicest natured wee dog we have ever had. He is teething at the mo so everything goes into the mouth. But hes got lots of toys and knows whats his. Still likes taking Cass's stuff but hes so cute he gets away with it. Best of luck for tomorrow. Be thinking of you
3204.
Hi Joystik
Yes it was snowing heavily earlier. The lawn is white. Stopped now though. Its been cold here all day. But the fire has been very toasty. Josh is still awake cough cough coughing. Hes getting a bit tired as its worse at night. Nothing really I can do more darn it. Off now to go and see him. Have a good nights sleep. Nanite xo
3205. Hi everyone :o)
Emily took a bit of settling - Lydia passed out in minutes ;o) Brents still not home - said he'd be here at 8!!! Think I'll put on a movie and kick back. Thanks everyone for your lovely posts :o). Hugs to Ryan and Josh and Briyanna - hope you have a nice night's sleep. Hugs to all you lovely ladies - your support means the world to me - thanks!
soniat-d (153 ) 9:34
pm, 21 Jun
3206. Paula, do you sit him up abit at night to help
stop the coughing?? I used to put a pillow under the mattress just to elevate the chest a bit. You will know all about stuff like that though. Hope you all manage a good nights sleep.. I think your weather is much colder through Gore way than it is over here. Not a sign of snow here....too sunny. Nite Nite Paula and family
joystik (281 ) 10:00
pm, 21 Jun
3207. See you tomorrow Sonia. Enjoy your movie....
Brent will be home soon.....sleep tight and sweet dreams to you too.....
joystik (281 ) 10:02
pm, 21 Jun
3208. Bogeyi
About the puppy - may I add my tuppence worth please?? Mum & Dad had a poodle for about 10 years & then a Bichon. Both absolutely gorgeous, both have non smelly wool as opposed to stinky dog fur, both loyal,fun & all the other magic- but Given different issues they had I would go for a poodle over the bichon. No offense Paulaxx but Every Bichon I have known yaps like mad - very head strong little pooches but adorable I know !!)& can drive you crazy when you want peace & quiet as my folks did in time of sickness(cancer). BTW I am not biased as am bossed around by a German Shepherd !! Take care all you awesome ladies in this amazing storybook thread.
persioux (192 ) 10:33
pm, 21 Jun
3209. I would like to offer my love and support
for anyone going through chemo at the moment, and everyone out there who is or have been cancer sufferers. My heart is truly with you all and feel for you all. Kindest Regards Lisa Lewis
ishop4you (14 ) 11:17
pm, 21 Jun
3210. persioux thanks for that, this is what we will
be looking for is peoples oponions and then we will search the internet while hes in there (a good side tracker)before we make a decision.
3211. Morning ladies! A chilly start here today, but a
nice sunny day coming up. Still no sign of snow. I feel we have been crossed off the snow list for this year. If I want to see snow, I shall have to go visit Paula and Josh, I think about an hours drive away. My SIL breeds poodles and King Charles Spaniels, and they just about drove me mental the last time I visited there. They all barked and yapped constantly from the time we walked in the door til we left. She would just get them quiet and the phone would ring, or someone would knock at the door and set them off. But the problem there was toooooooo...many dogs all competing for attention. Kinda puts you off certain breeds when you see them in a bad light like that though. I have seen other poodles on there own and they have been lovely, same for Bichon. The Bichon has such a cute and lovely face doesn't it?? You off to the hospital this morning Bogeyi and Ryan? Hope you get stuff sorted with them in there. Have a good day wont you....
joystik (281 ) 8:51
am, 22 Jun
3212. Thanks for your message ishop4you.....always nice
too know that there are people out there everywhere helping us all along this winding, sometimes bumpy road, back to good health once again. Hugs to you too.....
joystik (281 ) 8:53
am, 22 Jun
3213. Hi Paula and Josh...hope you all managed to sleep
ok through the coughing? I had a good sleep and only woke up when the neighbours went to work at 5.30, as always. She is the rural mail contractor, and he's a truck driver, and they head off about 5.30 and where once I never heard them, now I must be sleeping more lightly andhear them every morning. First morning I have woken up without nausea, and its just great. Feel like a new person actually. Got a wee head cold so hope that doesn't come to anything. I want this port in next friday, so dont need a cold right now. You get any more snow?? It is supposed to snow to low levels again today in Southland. I dont think it will though, its beautiful here just now. You have a great day...I'll be thinking of you. Hugs for Josh to help him stop coughing......
joystik (281 ) 8:58
am, 22 Jun
3214. morning joystik
Glad to hear you had a better sleep, we are off about 9.30 to hospital, had a call from the radiation people and they have made it for next wed.Beautiful and sunny here at the moment but not sure for how much longer.
3215. Hi Sonia, hows things with you today?? What movie
did you watch last night? I only ever watch Forest Gump!! It is my most favourite movie of all time. I bought the DVD cos I was hiring it so often! Still makes me cry every time I watch it. I bought another one 'Evelyn" a while ago and that was good but sad in places too. Have you seen it?? Have you seen 'The Notebook'? Someone told me to get that and watch it too. Hope you slept well last night. Today is lovely here. What about there?? I'm going to study today for a while and go for a walk later. First day with no nausea and I feel like a different person. Hope you have a good day too Sonia....I've been thinking about you lots....Take care...
joystik (281 ) 9:03
am, 22 Jun
3216. Great bogeyi, at least you have got action there
then. Sometimes you wonder what type f intelligence runs these places dont you?? Is todays appointment for more blood tests?? I have forgotten what you said? Its nice to sit here typing to you and looking at you and Ryan at the same time. Makes it real somehow!! I printed the big pic of Ryan in the Fire Hat!! Hes gorgeous and handsome too....
joystik (281 ) 9:06
am, 22 Jun
3217. Joystik to Boop .....are you there today??? Hope
you aren't washed away up there. By now it will be beauiful again. I think the forecaster said best place to be today was West Coast, so we will all come and visit. Did you move house yesterday?? hat may be why we haven't seen you? Does take a while to get the computer set up again sometimes, although it became a priority here, and in fact I got a lap top so I didnt have to wait....Is that addiction??? Anyway, I trust all is well with you....hugs to you....
joystik (281 ) 9:09
am, 22 Jun
3218. gets his looks from his mum....ha ha
yep off for blood test he must need platelets today as last time they were 13, but we have stretched out to 3 weeks...yahooo