So I dodged the whooping cough, and we travelled up to the central coast to see the family and stay a week at the Big 4 holiday park at Umina. We ended up coming home on Wednesday because the miscellaneous pain in my upper abdo was driving me batty. Saw Dr Will on thursday and had another CT scan, got some pain relief drugs for the interium.
Relaxing at home, feeling better.
Friday, September 30, 2011
Friday, September 23, 2011
Bugger off whooping cough!
Can't believe it, gearing up for a little R&R with family on the central coast, and Jessica has tested positive to whooping cough. Apparently there is an epidemic! The whole family are on antibiotics and staying away from civilisation for 5 days.
Saw Dr Will yesterday - he suggested a couple of drug options to attempt to retard any growth of the cancer while we wait for the graft vs host disease. One drug is especially new, and I have been referred on to a nuclear medicine Dr to discuss it. Its called Zevalin.
Enjoying a quiet day at home, weather is fantastic! Kids are behaving ,,,,,
Saw Dr Will yesterday - he suggested a couple of drug options to attempt to retard any growth of the cancer while we wait for the graft vs host disease. One drug is especially new, and I have been referred on to a nuclear medicine Dr to discuss it. Its called Zevalin.
Enjoying a quiet day at home, weather is fantastic! Kids are behaving ,,,,,
Sunday, September 18, 2011
All OK
Dreams about sister's hunt for a single man have stopped.
Dealing with an annoying miscellaneous stomach pain, that comes and goes - has been interferring with sleep in the last few days. I think it has something to do with when I take medication ,,,, so I'm trialing another combo today.
GT and kids have gone to have lunch across the city with his 90yr+ grandparents and his cousin from Bathurst. I have opted for a quiet day at home, and am enjoying the glorious sunshine.
Dealing with an annoying miscellaneous stomach pain, that comes and goes - has been interferring with sleep in the last few days. I think it has something to do with when I take medication ,,,, so I'm trialing another combo today.
GT and kids have gone to have lunch across the city with his 90yr+ grandparents and his cousin from Bathurst. I have opted for a quiet day at home, and am enjoying the glorious sunshine.
Wednesday, September 14, 2011
sleeping, sleeping and more sleeping
It's hard to predict from day to day how I'm going to feel. Today has been the first day since the transplant that I have felt I've had all my faculties about me, and I feel I'm functioning like a "well" person. I'm sitting outside with the fresh air and ipod; catching up on all the "home administration" and phone calls that are longest overdue (if you didn't get a call ,,,,, just think there are people who have been ignored longer than you!)
Brookie and GT have got a little cold that I'm trying to dodge. I've opened all the windows in the house and am washing all the things Brookie has wiped her runny nose on in the last week or so.
I'm at DAY 34. No GVHD (graft vs host disease) showing itself as yet. I'm travelling to RNSH Mondays and Thursdays to catch up with Drs and check in. I'm getting pretty bored turning up twice a week saying I'm doing well, no rash etc etc. I think tomorrow they'll start playing with medication doses to bring it. There will be no radiotherapy on my chest at this point, its apparently too difficult. So we sit and wait ,,,,,, however something interesting has started happening ,,,,,,,,,
Since my sister's stem cells have engrafted, I have been having dreams about her - almost every night now, completely different dreams, with the same general thread - we are on holidays together, and trying to find her a gorgeous single man. Thankfully, Babette doesn't read my blog cause she already has a boyfriend - but how weird that these dreams are occuring ,,,,,,, she has been in every dream I remember since engraftment. Spooky eh? And just for the record, I'm not doing any "test" driving.
The whole connection to my sister is weird considering I now have "her blood" pumping through my veins. She's a scorpio (starsign) - so I can imagine when the GVHD kicks in - its gonna be one aggressive little mother - with her and I combined, cancer will have no hope! Bring it! (,,,,yes sadly I have also been watching too much of the bloody X factor. I mostly sit there and go on about how (last year) that nut job kept getting thru (to my disgust) and finally won! Where is he now I ask you? I'm surprised X factor has any cred at all ,,,, but I'm still addicted this year! )
Brookie and GT have got a little cold that I'm trying to dodge. I've opened all the windows in the house and am washing all the things Brookie has wiped her runny nose on in the last week or so.
I'm at DAY 34. No GVHD (graft vs host disease) showing itself as yet. I'm travelling to RNSH Mondays and Thursdays to catch up with Drs and check in. I'm getting pretty bored turning up twice a week saying I'm doing well, no rash etc etc. I think tomorrow they'll start playing with medication doses to bring it. There will be no radiotherapy on my chest at this point, its apparently too difficult. So we sit and wait ,,,,,, however something interesting has started happening ,,,,,,,,,
Since my sister's stem cells have engrafted, I have been having dreams about her - almost every night now, completely different dreams, with the same general thread - we are on holidays together, and trying to find her a gorgeous single man. Thankfully, Babette doesn't read my blog cause she already has a boyfriend - but how weird that these dreams are occuring ,,,,,,, she has been in every dream I remember since engraftment. Spooky eh? And just for the record, I'm not doing any "test" driving.
The whole connection to my sister is weird considering I now have "her blood" pumping through my veins. She's a scorpio (starsign) - so I can imagine when the GVHD kicks in - its gonna be one aggressive little mother - with her and I combined, cancer will have no hope! Bring it! (,,,,yes sadly I have also been watching too much of the bloody X factor. I mostly sit there and go on about how (last year) that nut job kept getting thru (to my disgust) and finally won! Where is he now I ask you? I'm surprised X factor has any cred at all ,,,, but I'm still addicted this year! )
Friday, September 9, 2011
every day is ground hog day
These days my energy gets spent on the children/family and resting. Sorry if I haven't been returning calls, I run out of chat-power quickly, however thanks so much for thinking of me/us and ringing! I'll get back to you eventually.
Saw Dr Will yesterday and apparently my bloods are back to normal which indicates I am totally engrafted. That simply means its my sisters blood now running around my veins. Just waiting now to see what happens next regarding "graft vs host" disease. Have had some miscellaneous pain and did a CT scan which shows nothing, feeling better today so we will see.
Saw Dr Will yesterday and apparently my bloods are back to normal which indicates I am totally engrafted. That simply means its my sisters blood now running around my veins. Just waiting now to see what happens next regarding "graft vs host" disease. Have had some miscellaneous pain and did a CT scan which shows nothing, feeling better today so we will see.
Thursday, September 1, 2011
Glad to be home
Spending time with the family, and taking care to stay away from germs, loving the nana-naps.
Dr Will very happy with progress, I'll be doing some radiotherapy on the chest to keep the cancer there in check until my sister's immune system kicks in. That will happen in the next few weeks.
All in all, I'm feeling really good! Bring on spring.
Dr Will very happy with progress, I'll be doing some radiotherapy on the chest to keep the cancer there in check until my sister's immune system kicks in. That will happen in the next few weeks.
All in all, I'm feeling really good! Bring on spring.
Friday, August 26, 2011
BREAKING NEWS
CT scan done this week suggests that lesions in lungs are smaller! Yippee!
Just relaxing while waiting for GT and the chariot to arrive.
Jail break today!
But I can't escape without my drugs ,,,,, interesting colours eh, and nothing recreational!
Wednesday, August 24, 2011
Day plus 12
I'm back, last few days was feeling really flat and spent most of them sleeping.
Besides feeling flat, I've been doing really well and have not suffered any usual side effects at all - including spiking temperatures! Quite amazing really. However I'm not complaining, and "touch wood" I hope it continues.
Glenn is coming in with the shearers today, I've decided to have an "number 4" all over, as my hair has started to fall out, and dropping DNA everywhere is quite disgusting, particularly on your pillow - every time I rolled over last night i was blowing hair out of my nose!
Thanks to everyone who have called, sms'd and left comments on the blog! A special thanks to Giles/Jo and Jo/Tim for having the girls over the weekend - they had a fantastic time! and to everyone - especially in the St Patrick's community, who have been helping us keep our household running while I've been in hospital ,,,,, we truely are blessed to be surrounded by such wonderful family, friends and strangers (or friends we haven't had a chance to meet yet)
Engraftment will happen soon, and they are making noises about me going home on Monday.
Besides feeling flat, I've been doing really well and have not suffered any usual side effects at all - including spiking temperatures! Quite amazing really. However I'm not complaining, and "touch wood" I hope it continues.
Glenn is coming in with the shearers today, I've decided to have an "number 4" all over, as my hair has started to fall out, and dropping DNA everywhere is quite disgusting, particularly on your pillow - every time I rolled over last night i was blowing hair out of my nose!
Thanks to everyone who have called, sms'd and left comments on the blog! A special thanks to Giles/Jo and Jo/Tim for having the girls over the weekend - they had a fantastic time! and to everyone - especially in the St Patrick's community, who have been helping us keep our household running while I've been in hospital ,,,,, we truely are blessed to be surrounded by such wonderful family, friends and strangers (or friends we haven't had a chance to meet yet)
Engraftment will happen soon, and they are making noises about me going home on Monday.
Friday, August 19, 2011
Day plus 7
Ground-hog day again, doing really well. Its all about doing as I'm told, walking and sitting, saying a prayer or three each day and taking every day as it comes.
Thanks to my Mr Wonderful, who fussed over me today.
Thanks to Giles and Jo for burning some movies for me!
Thanks to my Mr Wonderful, who fussed over me today.
Thanks to Giles and Jo for burning some movies for me!
Thursday, August 18, 2011
Day plus 6
Glenn and my mum and a ward 12 friend chris visited today.
Resting now, waiting for dinner.
Wednesday, August 17, 2011
Day plus 5
Every day feels like ground-hog day, I'm doing pretty well and I'm taking every day as it comes. Lots of talking hurts my mouth, and upsets my stomach (even causes nausea) so I have been keeping that to a minimum.
GT has been here keeping me company, and he's been whipping my butt at cards.
Dr Will has asked me to do laps of the ward, so twice a day I do the corridor shuffle and I've been told to sit in a chair as much as I can during the day to minimise chest infections.
My neutrophils are zero and my platelets and heamoglobin are dropping, so its important for me to stay out of germs' way.
GT has been here keeping me company, and he's been whipping my butt at cards.
Dr Will has asked me to do laps of the ward, so twice a day I do the corridor shuffle and I've been told to sit in a chair as much as I can during the day to minimise chest infections.
My neutrophils are zero and my platelets and heamoglobin are dropping, so its important for me to stay out of germs' way.
Monday, August 15, 2011
Day plus 3
My girls drew me some lovely pictures.
Sunday, August 14, 2011
Saturday, August 13, 2011
Day Plus One
Two bags of cells all sorted over the last two days. Babs survived her ordeal - very stressfull having to lie in the one place with hugh needles in your arms for 6+hours at a time. Thanks babs for your life saving donation!
Today is saturday, I forgot the nurses start annoying patients here early - 5am obs, 6am drugs, 7am breakfast, 8am drugs, 9am shower ,,,,,, on and on it goes, only after dinner do you get some respite - until 8 pm when more drugs turn up.
Lovely Glenn has been here keeping me company. Nearly time for him to go home,,,,, that's the toughest part of the day.
Today is saturday, I forgot the nurses start annoying patients here early - 5am obs, 6am drugs, 7am breakfast, 8am drugs, 9am shower ,,,,,, on and on it goes, only after dinner do you get some respite - until 8 pm when more drugs turn up.
Lovely Glenn has been here keeping me company. Nearly time for him to go home,,,,, that's the toughest part of the day.
Friday, August 12, 2011
Day zero (yesterday)
Thursday, August 11, 2011
Wednesday, August 10, 2011
Day "minus one"
I told the girls that I really missed them and their hugs last night and asked them to send me a soft toy to cuddle tonight - brookie sent the christmas bear and jt sent the bunny! My big cuddly toy boy is in the background.
Tuesday, August 9, 2011
Finally in,,,,
See photo, my bicep is in there somewhere. There is a 45cm tube inserted into a vein that is pushed via the armpit into a main artery near my heart somewhere.
Got to 12D around 1pm and only in the last hour was my room ready. There was a steady flow of hospital staff visits while I waited, including the Boss Man (Dr Will) to keep me occupied. GT was patiently waiting with me, and thanks to dad, elaine and patty for visiting before their big trip to Russia/Scandinavia and to poppy-jack, vicki and jack snr for their visit on Saturday before their big trip to Croatia.
As per the photos above, I have lucked out again and gotten myself a single room ,,, with my OWN bathroom! (I must sound like a complete princess. I'm not usually, however past experiences have made me very "potty shy"!) Check out the brown tiles?
You will also see, I have computer and internet all sorted, even got my own beer fridge - GT's gonna be happy with that, and the floor to ceiling "mirror" would be "fun" except for the fact that it is only reflective tint on a window!
Monday, August 8, 2011
Ready and raring-to-go for another round of stem cells!
Friday had a lovely lunch with girls from uni et al! And I remembered to get a photo of the event (thanks Sam for sending it).
Sunday evening, my Baptism into the Catholic Church was an amazingly spiritual ceremony, thanks to all those who supported me! I am truely blessed to be surrounded by such a wonderful community. Special thanks to Sheridan for being my sponsor, and to the family for the lovely gifts!
Monday, August 1, 2011
Taking care of business
So, disappearing into hospital until the end of August has its draw backs as far as keeping the house hold administration running smoothly.
Credit card paid
Tax stuff sorted
Birthday pressies for up coming parties done
Hubby ready for my absence
Baptism organised
This week consists of a couple of visits to RNS, meeting with Father Borg, coffee and lunches with family and friends.
Credit card paid
Tax stuff sorted
Birthday pressies for up coming parties done
Hubby ready for my absence
Baptism organised
This week consists of a couple of visits to RNS, meeting with Father Borg, coffee and lunches with family and friends.
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