Room with a view

It's monday morning, and I've been a guest at the RNS Hilton since thursday night. Floor 12, ward B, room 5. The harbour bridge and city looks sensational from here, and yesterday's sunrise was glorious!

About 8.30pm thursday, after feeling like death-warmed-up all week, my temperature finally peaked at 38 degrees, flagging the 'go straight to emergency, do not stop' card.

I must say, being 'neutropenic' has a substantial amount of power in an ED. Because I have NO immune system, they process you immediately and get you to a room of your own. Top-shelf antibiotics follow, and then you are pretty much left alone.

Why RNS? Because I need to be here for the harvest on Tuesday 30th. The experience here has been interesting!

Firstly, I am impressed with the amazing variety of tasty road-kill I have had to eat! I think the kitchen staff here would give any iron chef a run for their money on originality!

Secondly, you do much better here if you can 'do it yourself'. Eg the bed has a crank-handle at the front for putting the back rest up and down, just like an old model T ford.

Attention to detail is an asset, particularly for the patient. It was saturday, when I pointed out that I didn't have any patient wrist-bands. I was only worried about it cause I needed my patient number to get the pay-TV organised. Drugs kept turning up that I didn't need and lastly, I was getting a blood transfusion that I knew nothing about. By sunday I had all the staff organised!

My veins have gone underground, so when its time for needles, I've developed the die-hard fortitude of a junkie and got the pin-cushion, black & blue arms to match.

Dr Will visited on Friday afternoon with the following update:

ENT (ear, nose, throat) surgeon will investigate my sinus issue, because I am going to be a great deal sicker in the near future and the infection in my sinuses needs to be resolved before D-Day on the 15/12

Immunologist will investigate my allergy to etoposide. This drug is a key drug to the usual 2 chemo cocktails for stem cell transplant, apparently my remaining alternative will make me many times sicker, so etoposide would be prefered if we can include it safely.

Dr Will has reviewed my biopsy history, and is of the opinion that the lymphoma is slightly different from its original diagnosis, suggesting the core is indolent (slow growing), and therefore harder to treat, evidenced by results so far ie lack of remission.

Plan A is to have my own stem cell transplant. If this doesn't work, he has recommended that we have a back-up plan which is to do the whole thing again and use someone elses stem cells - from a full blood sibling. BK and GK have said they will do a blood test regarding their compatibility to me.

Why can't we just cut it out you ask? Non-hodgkin's lymphoma is a cancer of the white blood cells, its therefore in the blood and removing a lump does not get rid of the disease.

That all said, hospital can be a drag, so a thanks to GT, Sam, Jay and Mel for visiting me and bringing me 'survival treats' and being such great distractions. Thanks to everyone who called and checked in on me!

Very special thanks to the Jack and Vicki for looking after the girls on Thursday night and Friday while GT and I were at the hospital, to Uncle Giles for running the girls up and down the F3 for us and to the Bock family who adopted my girls for the weekend. Particularly to KB and TB who worked tirelessly from 6am to 730pm keeping my babies entertained, fed, watered, toileted and bribed with treats! Great job girls, I love you heaps! Can't wait to see the Santa photo!

In memory of beautiful Shrubby, who passed away suddenly last week. You will be forever in our hearts, and I know you're with us.

To my darling GT, I love you and I'm so proud of you.  Through shock and grief you were amazingly strong on Saturday to stand up and speak about Shrubby, your best mate, and all the wonderful times you've had together in the past nearly 37 years. Not many people can say they have known someone all their lives, and seen each other or at the very least talked by phone every week! You guys had a special friendship and I'm sorry I couldn't be there in person for you! But you did it, and Shrubby would have loved it.

And to the Shrubbs. Thank you for the lovely native flowers you sent with Glenn to the hospital. Forever thoughtful in your time of massive loss! Thanks for looking after Glenn, you will always be like a second family to us and I look forward to giving you all a big hug when I get out of this bloody hospital!