Day Two

Slow day today, on the downhill slide.  Neutrophils are at 0.9, heading down to 0.  Just rested.

Day One

Good day today, feeling energetic.  Had a walk around the grounds with GT, wandered down to the supercentre for some retail therapy at Toys R Us.  GT left to pick the kids up and we had a skype session, had a chat on skype to family, and chat on phone to more family and friends.  Making the most of each day and taking one day as it comes.

Loosing my coolest room mates in the next few days ,,,, shame, but great for them!

Special thanks to Grant for fixing our home computer so the whole skype plan could work! VERY much appreciated!  Thank you Grant - hope you enjoy the wine!

Photos day ZERO

Day ZERO

Woke up with a spring in my step and had a relaxing morning with my lovely room mates chatting.

Had a walk in the fresh air with GT before 3pm rolled aournd.  Stem cells arrived and the transfusion took less than 30 mins and all done.  My blood pressue dropped to below 90, but all was well apparently fernergan does that - also makes me sleepy so had a big nap. 

Ready for another!  Just waiting now to see what happens ,,,,,,,

PS happy 40th Birthday to my friend Nads! hope you have a fantastic day.

Day minus 1

Last bag of chemo went in today - the most toxic of them all, however there are special drugs to make it tolerable, so I'm feeling tops. Thanks to Jennifer for the fantastic sushi and salad for lunch and the chat, always great to see you!  Thanks also to my little bro - Giles - for visiting and shouting me hot chips, yoghurt and a coffee - great to see you also and show you around my new home.

I've been a bit bored and have been wandering youtube for entertainment, I have linked Achmed the Dead Terriorist, its funny and racist - so don't watch if this doesn't take you fancy, but it made me laugh.

http://www.youtube.com/watch?v=1uwOL4rB-go

and this is a special christmas Achmed for the festive season

http://www.youtube.com/watch?v=wskT6YfVB6E

Day minus 2

Thanks to my visitors this morning - GT, Jay (and divine cookies!) and the Broughs! And for phone calls and text messages.  All keeping me sane.

Days go by - Keith Urban ,,,,, for all of you who should know a few Australian country songs.  http://www.youtube.com/watch?v=QlQVF-_D7Iw

Yes, days go by! Yesterday was a non-event.  Biggest excitment was to watch the fireworks at Carols at the Domain from my window. 

Today looks like a lovely day outside ,,,, maybe I'll go for a little fresh air later - walk off the extra kilo's I seem to be putting on.  How the hell I don't know,,,, the hospital food is disgusting, and when I do eat it - I'm hungry hours later.  Thanks to GT who bought me Pad Thai yesterday, and I've already gotten into the cookies Jay brought today, so maybe I have solved the "where did those kilo's come from" mystery.

Considering I've been pumped with hours of chemo cocktails for the last 4 days I'm feeling relatively good.  Apparently it'll be a downhill slide from about tuesday - which is DAY ZERO - stem cell transplant will happen at 3pm, so the schedule says.

Day minus 4

All went well again today regarding the medication.  There was another anti-histamine type drug added before the etoposide that worked a treat and no further reaction occured.

Had some lovely visitors - GT and Jessica popped in, at the same time as Jack, Vicki and their granddaughter Sammie, and the lovely Deb popped in this afternoon and escorted me to the ENT department to have a chat with the registrar there - and we killed about an hour or so waiting for him with some interesting and girlie chat - that had as laughing like the two old guys on the muppet show that sit in the mezz level.

Spoke with Dr Will today - and always, he never seems to come with the best news, howeve nothing surprises me any more.  So I handed over the PET scans a day or so ago, and they reviewed them at the department meeting this morning.  He said is was unaware at just how LARGE the lymphoma was to start with, and he still consideres what is left in the most recent PET scan to be large,,,, go figure.  He's not overly positive that the stem cell transplant will have me in remission by the end of it, however he reinforced the importance of the radiography at the end of it, and I will need to get onto that pretty quickly after I get out of here.  Dr Harris will need to organise this with the SAN when I meet with her on January 10th.

Room with a view

12D, bed 23 - can't complain!

Day minus 5

All good, slept well and got the juice bar underway by lunchtime.

Had the big dose of etoposide - and survived, with only a slight rash eventuating on one arm (same arm as the PICC line) and on the knuckles of the other arm.  Nothing else to report there.

Had a nana nap and missed seeing my first visitor for the day - Peter, sorry! Thanks for the lovely flowers.

Got to skype my girls which will be my saviour while staying in hospital for weeks on end.

GT is here and I've had my coffee fix from downstairs, and feeling good all things considered - must say the nana nap helped!

Day minus 6

PICC line went in this morning "relatively painlessly", then up to ward 12D to say 'hi I'm here!'. Found my bed - in a room with ladies and a view! :)

Touched base with Dr Will and the heam team.  Outcome - we are ready to go!

Then went out for my last lunch and a walk with GT in the fresh air and sunshine.

Back to the ward for 1.30pm Etoposide test that ended in an anti-climax of no reaction! Great news! Now its full steam ahead with the BEAM chemo cocktail.

Tommorrow starts the next treatment phase - autologous stem cell transplant

But before I get to that, the past 8 days have been very busy catching up with the "usual admin" that accumulates while away from home for almost two weeks, and getting ready for being away from home for another 3 weeks

I have:

• had a meeting with the principle and orientation for jessica at St Patrick's last monday
• had a heart gauge pool test and had a pap smear - if I have cervical cancer after all this God help me! As you can imagine last tuesday was fun! (Not)
• had fitted and purchased the school uniform and stuff for St Patricks, finished the christmas shopping and wrapped all the pressies last wednesday
• signed off wills etc (and got the bill!) last thursday
• did two christmas pagents last friday
• did two swimming lessons on saturday, and one dance concert
• had too many champaign's with family and friends on sunday, went to one more dance concert sunday arvo, then passed out on the lounge sunday night with the hang-over
• had Santa deliver pressies for monday morning, set up skype, went to the zoo to see the baby elephants and balmoral beach for a swim
• had a ct scan for my sinuses on tuesday and did lunch at the pub with GT, my dad and brother and then did 'coffee and cake' at the pub for new mothers to St Patricks tuesday night
• finished insurance claim, paid credit card and other sundry bills etc etc
• made phone calls and got through the daily "to do list"
• packed my bags for hospital and most importantly
• cuddled my girlies as much as I could and helped Jessica work through her little melt-down's about me being away for 21-days

I'm exhausted, however ready for tomorrow (well not really ,,,,but you can't stop progress,,,,)

Back to RNSH tomorrow, for the PICC line (like a canula except uglier and longer lasting!) to be inserted at 9am, then I'll be on the juice machine by mid afternoon and "day minus 6" of my stem cell transplant will have truely begun.

I'm free, I'm free!

Oh the sunshine never felt soooo good!

One more sleep

Spoke with Dr Will on friday and it seems the conclusion from the experts is that I didn't have an allergic reaction, more likely an infusion reaction - so Dr Will has suggested that we use BEAM cocktail of chemo drugs, and manage the infusion better. I have agreed.

Thanks to everyone who visited in the last few days, and for the long walks/short drives off the premises!

Rooming with sick old men has really started to do my head in, so apologies to those that got the 'ear bashing about how unpleasent it is, and all the gory details'. In the future I will refuse sinus treatment if having to room with sick old men again! I've even developed my own set of OCD routines!

Thankfully I am well enough to make myself scarce - the nurses lurve me! They also know I'll turn up again when my drugs are due! I've found my own toilet in the hospital that is clean, relatively quiet and very clearly marked ladies only!

Get me outa here!

A blog about nothing

Other than boredom! Still working on getting sinusitis fixed.

Saw the immunologists' today - smart, snappily dressed and handsome! They have changed my impression of the immunology speciality forever!

They feel I may not be allergic to etoposide, that it was possibly an infusion reaction. They were going to chat to the pharmacist again and then to Dr Will who will have the final say on the etoposide issue. I'll probably see Dr Will and the 'heam team' tomorrow for his thoughts.

Other than that, I only have my roommates to report on. Nice quiet blokes by day. But last night they turned into the Master Farter (silent but deadly), Mr Rattles, his dentures clatter together all the time, and the Freight-train, snoorer extrodinare! They got their own back, cause during the day I probably had the TV up too loud, was always on the phone or yapping to hospital staff!

Food still looks like road kill and tastes like nothing. The flimsy white plastic plates that meals get served on are starting to annoy me and are adding substantially to the land-fill issue.

Won't be home til monday and its been a week since I've seen my girls, so it was GREAT to see GT and BCT today for a few hours which put a real shine in my day!

Thanks also to paul and tabbie for visiting, the 'coffee, walk and talk' was therapeutic!

A complicated case

Spoke at length with Dr Will this morning which gave me the opportunity to revisit a conversation we had last friday regarding my diagnosis.

At my first meeting with Dr Will, it was thought that I was simply a Diffuse Large B Cell Lymphoma (DLBCL) that hadn't gone into remission, however it is now thought my cancer is more complicated than that and one that is in a 'grey zone' between DLBCL and Burkitt's lymphoma, that has genetics markers t(14;18), and could have transformed from follicular lymphoma. Nothing is for certain, but this is his thoughts after reviewing the data.

What that means is tougher to treat and tougher to get to remission.