Begin again

It's been a mixed bag this week, I came back from Brizzie after being invited to go see a show there , had a tremendous time with the "godmother".  She booked me in for an awesome massage, ahhhh it was sooo good, I could go on for ages but then you'd have massage envy and give up reading !

We also went for a yoga class that she does weekly and I was pleasantly surprised as it was Iyengar Yoga and a discipline I was used to, even more surprising was the muscle memory of my body.  Ok don't get me wrong, I still do yoga at home, and follow some of the Yogis online and do between 20 to 30 mins every other day, so I can still groan, bend over and touch my toes  anddddd breathe at the same time! taa daa!  But Iyengar is a stricter discipline and I love all the muscle trembling moments of it, (No not masochistic) it makes me feel alive

the Catherine Tate Show at the QPAC

Which brings me to this, oh oh I can see you all holding your breaths, chill out , I"m fine, I'm still in remission and plan to be for a LOOOooooooonnngggggg time.

I had gone in recently for my regular oncology check up with a quick nip up to the vampire uh I mean hematology nurse for my blood test, this one was quite funny, she said my vein kept running away from the needle, so after a few attempts we moved to the other arm, where the vein there decided to play possum and give it up. 

Ok well minus the black plastic nurse outfit...

Aneeee how, after my chit chat with my long suffering Oncologist ,whom lets face it I've bullied, been sarky to, teased, made jokes about but is still smiling when he sees me, says "right everything is good, levels are normal for you (notice for ME) and I've got something here for you to read and go over.  It's a preventative chemo treatment called POMM" (ha ha ha ha.. stop it) " it's very low doses of chemo in a pill".

 Now in my mind I'm thinking , me and my big mouth, why did I ask him what symptoms to look out for should I be concerned about the cancer coming back,( note to self, kick your bum when you get home) thus he's pulling out the stops and we're talking chemo again.. (cue screeching to a halt sound)

So I ask my usual questions, what does it do, what are the side effects, how long will it be for... two years.. wait what?  TWO YEARS.???.. are you kidding me?  er no and there is that dreaded vincristine drip involved on a monthly basis.  I look at my doc and think, this is not the type of Christmas prezzie I was expecting dude.

This was all before I went to Brizzie so put it out of my mind until I returned and read through the bumpf... wronggg.. should have stayed ignorant of it all.. however the one thing that stood out was wha they called the median of survival for lymphoma which was 5 years.  So when he called me I said, "so are you saying I've got a possible 5 years only to live?! " He say "no not at all, it's just a general median, not based on individuals but on a group"

Now see, those sort of things do play on your mind, and with that I went in to the cancer centre as usual for my weekly get together and to speak to my Nurse there about the proposed treatment.

My Youngest Son and Daughter, at his formal.

There are a few things ....ok ok lets get a wee bit serious ok, pull up a chair and lean forward) . there are a few things I want to be clear about, I have spoken to my kids, they support me in what ever decision I make, and they know I've always said, I want quality of life as opposed to quantity of life. If for example the 5 year mark is the yard stick then I'm doing exactly what I've planned to do, that is to live life now, in this moment, with joy and gratitude in my heart, to know that I will put everything in place first as a consideration to my children (i.e. will, funeral arrangements, my own little collage of pics and music ala love actually heh heh a nutter even beyond the grave) because and I say this with all honesty, death is something we all face, weather it's now, later on in life, tomorrow, one thing is for certain, it's not something we can decide or plan.  It happens.  How it happens as well is truly out of our hands.  If you understand that there is nothing to fear from death, that it's just another journey.  The emotions you feel are due to you leaving loved ones behind, but if you are open and honest and prepare them, then death should be something celebrated, because it was a good life, it was a meaningful life, filled with the entire mixed bag of emotions, experiences and to have had the privilege of living it  and understanding why we are here.

Being a cancer survivor does not define me. in essence I am who I am with another new facet.

 So don't put off tomorrow what you can do now, today, go on that holiday you've planned for for ever, chat up that guy or girl you've always wanted to, dance naked under stars at night (but for god's sake don't let you kids catch you or they'll be scarred for life!) read all the books you want, compete in all the races or competitions you've said you wanted to do, latin dance classes, skydiving, just do it and have no regrets.  Breathe!

 I'll say this I am luckier than most, for that I am eternally grateful.  Stop blubbing, grab a tissue, I'm still here la!
with love and gratitude
Dx

Down the Rabbit Hole - Dodgy Daph's Medical Adventures pt 4

Going back home was great, you sleep in your own bed, you don't get woken up every 4 hours , apart from  when the kids are getting ready.   One has to play Elvis's blue Hawaii to kick off his morning (don't ask me where he gets his musical taste from k)  and the other one is listening to rap. (yeah well we know where she got her musical taste from!)   It's good to be alive!

Food and Kids... the game changer

I  try to get  back to the normal swing of things, go for my walks, have con calls for work, but all the while I'm waiting for the call that tells me when to go in to the Hematology Clinic. It's a worry at the pit of your stomach.    When I get the call it's like the calm before the storm.
The day arrives when I go in, Annie is driving me in and holding my hand.  My Doc is Dr Rich. Hes asking me what I know so far.  So I told him that I supposedly have a mass on my lung that was fairly large and that it was suspected Lymphoma.
He said " Yes you do have Lymphoma. "  I swallow.  "in fact the mass on your lung which is a very  aggressive form of tumor and rare is currently being viewed in Brisbane to determine weather it's lymphoblastic.  If it is we will have to begin with a very aggressive form of chemotherapy called HYPER CVAD.  Do you have any questions?
Yes at what stage is my Lymphoma.?  I ask nervously (c'mon we're all curious!) .
He says " it's stage 2, from the CT scans and PET scans it's just localised to the lymph nodes around the lung area only.  Phew that is at least good.  then he says," however I do want to do a bone marrow biopsy."
 I asked him"why?'
 he said "for the possibility that it might have spread to the bones or more for prevention purposes."  I asked him "why now as the other times they said they wouldn't do it because of the fluid in my lungs.. "
 He said "we'll be really careful and give you loads of local anesthetic to lessen the pain".
 For some reason I'm totally against it.  I mean OK we're talking about chemo , we're waiting to see the classification of the tumor and now this?"When do you want this by?"
 He says" I can get you on Thursday.  By then we'll also have the results from Brisbane. "
"Can I think about it,?
 He says "yes, I am not forcing you to do this, I don't want you in any pain , think about it and call me later to let me know if you're ok with it", and writes is number down for me to call by the afternoon".
Annie and I go for a coffee, she asks me why I don't want to do it,
I said " I just feel that it's really not necessary at this moment in time, it's not going to make any difference to the treatment they're giving me".
 Annie says "ok my friend it's you're choice and I'll back you but if I were you I'd do it and that's all I want to say."" 
I called the doctor and told him that I just didn't want to do it, so he said "ok, come in on Thursday for blood tests and results."
 I go in to the clinic on Thursday and yes it is confirmed that I have stage 2 non Hodgkin's lymphoma tcell lymphoblastic tumour.  Dr Rich wants me in on Friday for final check up and bloods and I'm in hospital next week.  I asked if I could wait to go to hospital, it 's all so fast.  He said "no Daphne, we need to get in there and get rid of this mass , you're not going to be able to travel and will have to stay put for a while". So in a flurry he starts to write down letters to all parties on my behalf.  So competent, and pushy but I understand why he's so adamant.

waiting for my blood tests

I go home and I'm in tears, I'm ranting, I don't want to do chemo, who the hell does?  It's like dropping a napalm bomb on your system.  It compromises your immune system and then there are all the side effects like hair loss, weight loss, muscle mass loss, and a whole host more one finds out after going through it.   I get several calls from those closest to me, with words of support and encouragement.  Bottom line is they all think I should just bite the bullet and do the chemo, "just look at it this way Daph, get it over and done with, it's 5 months of your life , then get on with your life and live it your way".  says Kymmie . 
Yeah this is it and I can't mess around, I want to be around for my Kids Graduation from university, may be kiss a grand child or two, finish my bucket list of travel destinations and get one more show off the ground.  Suck it up Daph, you can do this, after all you've been through more in your life, including watching your husband die in your arms, so get the warrior goddess in you to the fore and tame the beast.
 I see my doctor again we talk about the protocol I will be going through, the side effects, how many cycles and tolerance levels.
I look at Dr Rich and say, "but Doc, how am to pay for all of this?  My Insurance from AIG have refused to honour the payment, I don't have medicare , and I can't work now "  He says' look we've been in touch with Admin and we know what's going on but the most important thing here is we get you treated first, with regards to the hospital bills, we'll sort it out later and also get your social worker to start working on how we can sort that out ok, don't worry about that "  I'm shocked,  most of the hospitals I've been to don't even look at you unless you present your insurance card and your credit card. Here it is treatment first.

My Picc Line with 3 lines

So I begin my Chemo that Monday, the first thing they do is sit me down and brief me on what the protocol will entail, as well as leaflets and support groups that I can reach out to. (yes I behaved and didn't do anything silly)   Then I'm taken into the room to have my picc line put in,  it's easier for them to get a line in through one of your main veins in your arms as opposed to poking it with a needle, less damage done and it goes straight to your main ventricle in the heart that pumps out the most blood. I won't tell you about the pain, but this is the beginning of a lot of localised anaesthetic and long needles.

Calculating the ration of chemo and drip timing

Next I'm sent to the chemo chairs for the nurses to begin prepping me for my first chemo treatment.  I will be in hospital for a week as they need to keep an eye on me on how my kidneys are handling the chemo and to ensure that my pH levels are stable as well as my vitals.The nurses make it an easier stay,

oookk so this is what chemo feels like....

I have to have a lumbar puncture on my second day, no fun but it has to be done as they also inject a minute amount via your spinal tap to go past the blood brain barrier to get to the brain so it's more of a preventative dose . My two brain cells are loving the attention, lets see who makes the most of this.. ha ha.
My week of bad hospital food, lumbar punctures, chemo treatments, urine tests, 4 hourly monitoring, white blood cell shots are over, I get to go home and my brother surprises me with a visit from Malaysia!  Thank goodness for family.

I'm packed and ready to go home after a week in hospital!

So one treatment down and I'm back home, what is in store when I get back?  a friend who is working actively to promote her hair auction to raise money for me https://www.gofundme.com/down-the-rabbit-hole-with-daphne and what it really feels like to be a cancer patient.  I'll be back

Dodgy Daph's Medical Adventures - Down the rabbit hole Pt 1

This is not for the faint hearted, it is a kelideskope of a ride, and we are going down The Rabbit Hole...

So Monday Come along and the "Godmother" fusses around me so she can send me to the station to go to town as the Bupa Medical Centre for visas  is in the Heart of Brisbane.  I make my way in and am early , for once,  can you believe it.. no neither can I.

The staff are pleasant and do all the usual questions, "are you pregnant"... I fell over the chair laughing... "er no my dear, the plumbing came out a long time ago! "  Mind you when I was waiting my turn I heard the receptionist asking an Asian girl who was also there to do her Medical for her Visa, if she was pregnant, the girl who obviously didn't speak much English and was more into texting her phone looked up and said "Ah?" .  The Receptionist explained, "you have ticked that you are pregnant on this file you filled out online, are you pregnant. ?  "  she says patiently.   The Girl just says " Uh no"...
So the receptionist has to go back to authorise a change in the system.  They do have their work cut out for them.

hanging out at the reception area Bupa Medical 

Eventually I get called in, it's the usual, height, weight, urine sample, questions of lifestyle.. do you drink... ha ha ha,,, well. Lets not go there.  Then it's time for my Chest X ray.  After which I have to go see the Doctor, who's Russian.  I am biting my lip, so not doing the Russian accent here.  She prods and pokes me and asks me all manner of questions and then droops the bomb on me, and says they are not "happy"  (kheappy) with my chest x- ray,  as the left side from the heart down is white instead of black.  So I asked her what it could be , "we don't know, we need some time for diagnosis" Well I asked didn't I?  Is it cancer?  Is it pneumonia?  Is it a collapsed lung" what???
"Can you stay for a little while and I will get the other consulting doctor to speak with you" Dr. Svetlana says.   I'll wait, not like I have a hot date or anything....

Dr I really don't know that much more, hasn't much to say, more like, "you will certainly have to go to the designated "chest specialist" for further investigation, so please don't go back to the Sunshine Coast Just yet, we'll probably try to contact you by four today or tomorrow morning" . I said ok but just to let you now yeah, I don't have TB, Malaysia is not a third world country, we are a developing nation and all of us have to have TB shots when we are born and another compulsory one when we are in grade 6 of school.  So ( everything else is said in my mind and rhymes with rum)

I shakily get my stuff and head downstairs, and stop by the coffee shop to get my head together as I don't know what to do.  I text "the Godmother" who is flat out and says she will call me as soon as she's got a minute.  So whilst I'm having my coffee and croissant I call my Doc in Malaysia and tell her what's happened,  She's so placating, she says  "chill sweetie, You're not displaying any symptoms, so most probably it's either consolidation or pleural effusion (water on the lung)  you had a bad cough back in Malaysia this could have cause it.  so deep breath, and chill ok ?".

at the StellaRosa getting my fav brekkie, a cafe latte and a croissant... such an easy girl to please

I was heading back and get a call for the husband of "the Godmother", hey I'm close by shall I pick you up? he says.  "Sure!, "  they are such a great caring couple these two. (you know the song Fairy tales can come true it can happen to you if you're young at heart...  it's frank sinatra ...peasant ) 

As we head home I give him a glossary of what has happened.   I now have to let my son know, who seems to take it in stride  and we hang around waiting till the next morning, no call.  I eventually get an e mail from the Bupa Centre saying "non urgent further Chest Exams" , basically saying I'll have to go for more tests and it could take any where from 2 weeks to 2 months for the appointment so to be aware for it.   Well thank you very much and we outta here. 

My son (who has now been dubbed Boney M by his Uncles due to his fro)and I had a long trip back, by the time I got home I just wanted to fall in bed and sleep for a week, but no I had 7 missed calls and numerous messages on the phone,  as I was about to hit play the phone rang and it was the Doctor form the Bupa Medical Ctr,
"Daphne we've been trying to call you all day, you have to go to emergency "
"Huh?" is my answer (lucid and succinct as usual) , "Oh why?",
 The Doctor says  "we've discovered you have a lot of Pleural Effusion on your lung and you need to go  to Emergency...now"
 "but I'm feeling fine , can't I go tomorrow" . I say...
"No, you have to go now" Says the Doctor.
Bummer, and I just got in my comfy clothes.

I call down to my daughter and her boyfriend and ask for a ride to the hospital, they take me to the Sunshine Coast University Hospital Emergency (I'm certainly not going back to Brisbane), and the receptionist checks me in, "have you got travel insurance"?  she asks, Yes I have "AIG travel Guard", excellent , they fill out my details , look at the letter from Bupa and hand me a mask to wear.. uh LIKE I HAVE TB for crying out loud.  20 minutes later the receptionist comes to me and say take the mask off luv the doctor says you're fine... (small smirk from me zero to you)

SCUH is the largest infrastructure in Australia so far

Eventually we are sent to see the attending doctor in emergency, she goes over my vitals, asks me the usual "are you vomiting blood?" no, "are you short of breath", no . "do you feel dizzy" no, "have you got night sweats" no, "have you got headaches" no, well I have now with all this palaver!  Anyway, she says we'll have to go get a whole load of X'rays done and CT scans done by them.  So I get to wear the sexy white gown that does up at the back and flaps at your butt.(thankfully and THANKFULLY as we are women and women can be VAIN, i've got me good knickers on!)  It's hospital policy everyone has to be shuttled around in a wheel chair or a bed so I'm chauffeured around from one radiology room to another! wheeeeeee.

The X'ray is done then the CT scan, of which I've never had before.  They stick a cannula in my arm and then flush some saline through.  The nurse says the machine is going to just move me in and out of the tunnel a few time and to do as it instructs.  As I'm conveyed in this electronic voice says "breathe in",  then "hold you breath please", then "breathe out"... right that was fun.  Now for the fun bit really, they have to put the blue dye in my veins, I'm really nervous by this time as I'm not really a medicine girl and hardly take anything , even hard pressed to take a panadol for a headache.  So the nurse says do you have any allergies?  Not that I know of, ok if you feel anything let us know... my heart is racing by now and my anxiety is kicking in, the die gets injected into my cannula in my arm and I'm back on the conveyor.  I tell the nurse my heart is pumping, she say you're anxious my dear, you're ok.  it won't be much longer.

they have different themes on the celing... told my gyne this ages ago...bah

Finally they take me off the CT machine, and wheel me back to the emergency room.  We sit around for a bit and then more blood tests are done.  Finally in an hour Dr big brown puppy dog eyes comes and says "hi Dx , nice to meet you but I wish it was under different circumstances, we've found a large mass on your lung and it doesn't look good" . He's saying all this to me very gently and sadly.. I feel like reaching out and patting his hand,  "so what's the bad news doc"  I ask him, he looks up and says "do you want everyone in here to hear,?"  well it's my daughter so I say yes,  He says " well we suspect it could be cancer, it doesn't look like lung cancer but we'll have to do more tests,  we're worried about the fluids in your lung so you will have to stay in hospital while we sort out what is to be done."

I turn to my daughter and see if she's ok.  "Lani, look at me, it's nothing like what daddy had ya, I"m going to be fine, what would you like to do, you want to go home?  She says "No mummy I'll stay here with you till I know what room you're in."   It's getting close to 11 pm so I send her home and will inform  her where I'll be, after they put me in the respiratory ward. They wheel me into a private room while they wait for place for me.  There's a lot to think about, it's a bit surreal, I don't feel like there is anything wrong with me, I try to shut my eyes and rest and block out all the noise,  tomorrow is going to be  weird with a capital W,  .. I"m thinking man it's the longest time I've spent in my tennis shoes...

Tales from the Bush, pt 4

Day 4, Daph’s Caf (the new moon in Virgo wanes)

I hear clicking on floor boards, some thumping and then some breathing, and it’s close by, do I dare open my eyes, I’m going to have to see what type of creature from beyond is about to attack me.  I look down and two pools of liquid amber are staring at me.  Ahhh morning Doggie.

Doggie

We amble off to forage for food, prod Lurch to see if he’s still alive under the doona, and settle down to some work and coffee.  Doggie’s job is to watch me work and to get underfoot every time I walk around the kitchen.  He’s good at his job I must say.  

It’s time to let the evil cluckers out of the coop, when I open their door, I use my most strident tone and tell them to “get a move on girls, no lollygagging, move it move it move it!”.. Heh Heh, and they all march out in a line.  If anyone saw me curled up in laughter by the coop they would have thought I had lost my marbles completely.

EUREKA!  2 Eggs!

 I duck under the lemon trees, which have manged to scratch up my arms when I divested them of their heavy yellow crop, and look at the roosting area for eggs.  EUREKA! Not one but two eggs!  I do a little jig, look carefully left and right so as not to create any suspicion with the “hen brigade” and leg it back to the kitchen.

I show Lurch my treasure, he just shakes his head, “ma, whatever floats your boat” he says.

As long as there are carbs and high sugar treats, the teenage is happy.

We decide it’s time to explore our surroundings.  I believe there is a rather large dwelling type space, but it doesn’t house people, instead it has row upon row of provisions,  like dead animal flesh , there is even an entire area dedicated to crops that have no roots or soil! “ MUM you twit, it’s the supermarket, lets go !” says Lurch.  Humph teens, such killjoys.

The next day I'm joined by the heavenly child and her boyfriend , we're celebrating Lurch's birthday.  It's been ages since I've driven so I'm whizzing around in the little VW, forgot what freedom having a set of wheels can give you.!  

Just raining, and raining..... and raining

The weekend is full of rain, and hail and we 're batting down the doors and windows.  Such excitement, well at least it keeps me occupied and I don't have to think about Monday which is the dreaded "M" day.  ( that's M for Medical.. yuck)  now that's going to be another adventure.  

Stay tuned as the next adventure turns dark. 

Tales from the Bush, part 3

Day 3, Daph's Caf Log (the Sun, new moon Mars, Venus, and Mercury in Virgo)

Oh will you please please shutttt uppppp, sodding birds!!,  Kookaburras sound like they’re having a mad rave up, do they not have volume control???? Doggie looks at me from the side of the bed, "time for breakfast " he says with his eyes.  It's only 6.30 am and we're in full swing.  I grab the dressing gown as the temperature has fallen, hop into slippers and trudge upstairs, bleary eyed to feed and let the dog out.  He looks at me as if to say "wot, you're not coming then?"  (he's english, so he speaks that way)

I stumble back to bed thinking I can get another hour in, BUT NO, the dog begins to bark. Well let’s check to see if someone is at the door. Oh yes, of course, delivery man, with a package (oh behave!) , the earlier the better his attitude seems to say.  I keep a grip on the dog's collar, as delivery man tries to pet the dog.  Can't you see this is a trained attack dog that can kill at 20 paces? ...Not. I think the wagging tail gives it away.  People love Labradors, full stop. 

Leader of the Pack!

The day meanders on, and it's time to let the evil chooks out for their "run".  I head down to the coop and they all gather round the door, "don't even think of rushing me again girls, I've got my ammo with me again" I tell them as I open the door.  Oh, the look of utter disdain on their faces, I swear they're actually grumbling about me.  I go and check to see if there are any eggs, there must be mutiny on the bounty, as no one as laid ANY EGGS!  Oooo, well good thing I'm not having breakfast this morning eh.

Dog and I go for a trot later, and a mad gnashing black ball of fur comes hurtling out of a house trying to attack us.  Doggie just looks at it as if to say, "oi oi, what's YOUR problem guv".  The owner of the white gnashing teeth and black fur runs after his dog and apologises profusely as everyone winds their way around me and I stand in the middle screeching "arrrggghhhhh", like the big girls blouse that I am.    Well that was the excitement for the day.

and it poured down with rain, talk about a bumpy ride!

Lurch aka youngest son arrives later that evening, hens are already in the coop, everything is quiet, looking forward to good night’s sleep. I wonder what the evil cluckers will get up to tomorrow. For now… zzzzzzz

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Tales from the Bush, the log book.

Day 1, Daph's Caf Log (full moon in virgo)

Have arrived finally at the Capital, forgot to eat or have a coffee in my haste to get public transport to my destination, so was grumpy with hunger.  The Godmother whisked me to a mall as she had some errands to do, there she fed and watered me, thankfully, or I would have bitten her arm off (in hunger and anger... whichever is preferable at the time...)  I've also managed to mess up my con call with my tribe so no one is gong to save me now.

We arrive at casa Godmother, and the pygmies come bounding down the stairs to greet me.  It is a common custom they say, for these albino pygmies to jump on you and wrap their arms around you, or  so I've been told. "Stop calling them PYGMIES Daph! They're kids", shouts The Godmother.  Right... David Attenborough  mode off.

The Gin Deck of the House... he he he

I've agreed to house sit for a week, this means apart from getting a 5 bedroom house on an acre of land to myself, I also have a few "chores" to do.  One of the chores is to take care of their gorgeous brown Labrador doggie who is so laid back and the other chore, that has my inner "city girl" nostrils flaring, are the "hens" aka killer chooks who need to be let out of the coop at the bottom of the yard, next to the lemon trees.  "Don't worry, they will go back in on their own once the sun goes down" assures father to the pygmies and husband to The Godmother.  uh huh, righto.

Take me for a walk pleaseeeeee

Another godmother in disguise arrives, so do more pygmies, I am being plied with champagne and quiche (caviar is so passé sweetie dahlinks).  They plot, they cackle, they speak their own coded talk, (you know, mommy speak)  I eventually flee to my cave aka the guest room which is fabulous as it's on it's own floor downstairs.   He he he, this will be a walk in the park, are my last thoughts as I fall asleep , but I wake up a little while later, heard someone snoring... oh.. it's me. zzzzzz