Sunday, June 17, 2018

How ya like me now !

                                       YOU TUBE LINK FOR VLOG

"Mum, you really don't need to get a DSLR camera for your vlogs you know " says my son the all knowing 17 going on 35 year old.
"Your smart phone is more than adequate for the job".  He continues.
"Yes well I need to find out if I can get a tripod and a microphone to attach to it as I'm worried it's going to sound tinny and the video will be shaky"   I reply
"Mum, this is a vlog, not a professional production for Pete's sake! there is no need to make it look so polished.  The guys I watch on you tube just aim and shoot with a bit of editing ".. says smarty pants.  "You can just use your editing app on your laptop and later on figure out if the sounds needs to be tweaked"
When did he get so damn smart hmmnnn.??

The producer in me groaning

I had been thinking for a while now of what I'd like to do, I knew I couldn't  and can't go back to work, and that any sort of travelling is out, and what ever I do has to be a minimal stress level type of set up.  I strongly felt that I needed to give back and to help those who were also in the dark like me, in the beginning,  on the side effects of Chemoteraphy.  What to expect in hospital, how to prepare yourself, etc.    A lot of the info is gleaned from other Cancer patients and survivors, nurses and dietitians etc.    Sharing is caring they say and I'd like to do my bit as well.(to a certain point okkaayyy)

So yea, I shot my first vlog intro on my smart phone's camera,  I corralled my daughter to shoot the video for me.  She used the back of a chair she straddled to keep the cam phone stable.  We did it in less than an hour with me stumbling through all the things I wanted to say and having "chemo brain" or "brain farts" as some people put it !  I've bought an art block since with some masking tape and an  artline pen to write the points down that I'll tape to a wall when I'm shooting so when my mind goes "BLANKKKKK" I can do a quick refocus!  Like using an el cheapo teleprompter!! ha ha ha.  which brings to mind the scene from Love Actually.. remember it?

Now to find a cute guy to hold the cards for me too!! he he he

I 've decided that I wont shoot the vlogs in any particular order, just what ever comes to mind that week.  So everyone can flick through and view the videos they feel are most pertinent to them.  Well it would be nice if all the vlogs were viewed but I totally understand!  Plus I was doing some research on you tube to see if I could leave links on my vlogs for people to use as examples but Uhhh .. so many videos too little time.  So yeah lets keep it short and sweet.

Hmmnn with or without glasses to video?

Since I can't drive yet, it's easier to order everything online.  My brother tells me to not believe in  Dr Google!  I'm like "waaahhhtttt"??!!! "neeveeerrrr" !!! (he thinks I try to diagnose myself and my ailments online!! bah humbug)    However I do google a lot of ways to use essential oils, where to buy herbal teas, pure flax seed oil etc. So I'll be sharing those sites as well on my vlogs as well as the other products I use daily and regularly to keep me going.

OOOPPSSS! errr it was to show healthy eating!

Anyway, I do hope you enjoy the vlogs, and get something out of it.  Don't hesitate to drop me a line if you have some questions or suggestions on topics, am all ears. (literally ha ha ha) . take care and see ya on the flip side.

Wednesday, May 16, 2018

Out of the Rabbit Hole and into the LIGHT! YIPPIEEEEE!

"You're so bloody stubborn!" says my bff Peggs over the Phone,
"Yes , I am, look at the dictionary under Dx and it says stubborn cow" . I say
"You know it's for the best right, just get it over and done with" . Says she who's never gone through chemo but loves me anyway
"No friggin way, after the last round (my 7th cycle) there is no way I'm going to go through that again, it's my body, and it's my decision, the end" . I grit out mulishly
"Come on Dx " she says
"I don't want to talk about it, So when are you coming over to visit " I say changing the topic very very quickly
"sigh... let me check my diary, hopefully April" she says

We chit chat a bit more and I know she's not really going to let it go but as I said, I just didn't want to talk about going to do another cycle , or going through the horrible experience like the last time, the nausea, the vomiting the stomach spasms,  aches,  the weight loss and weakness.  I was done.  Did you hear me DOC, I'm done!!!

Yes I did tell the Head Nurse and Doc about my decision, Doc said "Dx, we're going to give you an extra week, you're anemic and obviously need to rest but reconsider please, the dose won't be as strong because of the weight loss and this is the final cycle, lets kick it in the arse" ( I know who I want to kick in the a@#$.. humpf)

A couple of weeks later I'm in Hospital, having my final cycle of Chemo, I told everyone I'd be partying in between the chemo drips, bring on the disco balls and the non alcoholic dwinkies, we'll boogie down till we get told off or fall in a faint on the beds.


Yeah that was all in my head, I was making like the bestest of the best patient so they'd let me out pronto.  Which they did.

After that it was regular blood transfusions and blood tests to ensure I was ticking along, my final P.E.T scan was in the second week of May, and wouldn't you know it, during my transfusion, my temperature sky rocketed .  Doc walked past me and said, "we're admitting you Dx, gotta find out what that infection is"... LURVERLY, I just love being in hospital.. NOT.   Anyway, fast forward a week later, I'm sent home and am recuperating with bi weekly visits to the Doc until the P.E.T Scan happens.

Talk about a cliff hanger, I had the P.E.T scan (more of the "take a deep breath and hold please,  now breathe normally..)  but had to wait for another week before my oncologist talked to me about the results. anxiety much?   Results day came pretty fast and...... I'm in REMISSION!!!! oh yes I beat the beast folks.  (I would try to do a jig but the body ain't up to it YET)


What a long road it has been, but the Doc says, "Now's the rebuilding and recuperation period.  You have to watch out as you're aware your immune system is still weak, you have to start an exercise regime to rebuild the muscles that have all gone, (ya do you know where my bum has gone? I seem to have lost it)   you have to start eating properly to gain weight and you have to stop stressing."
   "Can I travel?" I ask hopefully.  He shakes his head, "because the tumour on your lung is taking it's time disintegrating, you'll have to wait till it's gone completely, it's just a dead lump (charming) right now. (He gives me the "look")  We'll talk about radiology in a couple of months time.  Booooo. Oh well as long as I'm healthy and there's no more chemo , everything is blue skies and sunshine.

So because I can't be in large public spaces I spend a lot of my time at Bloomhill Cancer Care.  I have my Art Therapy Classes on Wednesday

as well as  Group Meditation :

Meditation Room  this is a link to the video (for some reason I can't upload it here)<--- br="" link="" nbsp="" to="" video="">

Today however I did a workshop that is provided by the LOOK GOOD FEEL BETTER program, I had been given their leaflet when I was going through Chemo at the ADEM CROSBY CENTRE but just wasn't up to it.  Last week the girls at Art Therapy class egged me on so I called up and attended their workshop. Hey, I'm bald, no eyebrows and no eyelashes what have I got to lose?  (Please do not ask about hair in other places like some of my friends do... :-p )

It was a two hour workshop to show us how to take care of our skin, do our make up and to try out some wigs, scarves and caps by they two lovely ladies from The Look Good Feel Better Team

Mary is on the Right and she's the one you'll be dealing with when you book in QLD

All this Skin Care and Make Up once we've tried it on is for us to take home,!

And since we loose our hair, the wigs, scarves and caps are a welcome part of the workshop

After the two hours, I'd learned a lot , not only about Looking Good and Feeling Better but also the women around me who were going through or had just finished Chemo just like me.  Knowledge is power, the more you enquire and talk the more you find out.

So with that I've decided to start vlogging about simple recipes for our shattered taste buds, and tips from my cancer experience.   I'd love to give back to society as they've loved and supported me during my protocol.   I've just got to set up a crowfunding site to purchase the equipment etc.   If you have any suggestions, I'm all ears... hairless ones that is . Ha Ha Ha Ha

Wednesday, February 21, 2018

Is that the light at the end of the Rabbit Hole?

I was thinking of writing my blog a few months ago when we uploaded all the videos of the blond hair being lopped off, but then I've been a bit pre occupied with the chemo treatments and was in emergency with a high fever (it's what happens when you have a compromised immune system) so was in the hospital for 3 days with blood transfusions and antibiotics , they finally let me out. I must have looked like a missile outta control getting out of there!  Well I was counting my free days, 4 more and I had to go back in for another round of treatment.

Hello it's me!  still alive n kickin at Noosa! 
Reading through some of my texts and letters to friends and family it looks like I've totally lost my sense of humour ( I know I have as I've started posting on Face book political pages... which I never do as a rule!) and it seems that the treatment was my total focus (kinda of hard not to be! but hey there's more to life),  so I took my self to the  cancer centre called  BLOOMHILL   Best thing I ever did.  My designated nurse was fantastic, my brother had arrived on the same day so he came along to and was mightily impressed.   It's situated in the middle of this fab rain forest, the cafe which is on their deck is wonderful, peaceful and you could just sit there sipping your latte and nibbling on your lemon slice for ever.

Whilst we were taking in all this goodness, there was an unexpected cancellation and since I was there I managed to get a reflexology session.  It was bliss, and she dropped some important knowledge on me.   The thing I noticed is as cancer patients, we ask all sorts of people for advice but the best are the nurses and caregivers.  So now I've got something I can do with the numbness on my fingertips which is caused by one of the chemo combos.  You leave the centre feeling calm and peaceful.  Next time I went was for a psychiatrist consult.  Not scary at all, peaceful, lovely cuppa , brilliant view an such a patient calm doc. 

I have yet to go back and use their yoga or massage classes but I will as soon as we've got a rein on the appointments at the hospital  and my weekly chemo sessions.  Oh you want to know how it went with the Psychiatrist?  Well of course I'm mental but then it's a good mental and I'm in the normal zone so far!!!! I'm now closing on the last two cycles of my treatment.  Because of it's toxicity levels building up in me, my hemoglobin and platelet counts get wiped out so I have to go back n forth to the hospital for loads of transfusions.  A big huge thank you to those of you who donate blood and Platelets ( that's you Annie), we couldn't survive without you.

I'm sure my oncologist wished I'd be as thankful to him,  the other day at our appointment before he could do anything i said "look at my eyebrows!", he looked at them and said " err they're nice",  I said are they straight and do they look too dark?"   he said " no..., is there a reason to this? " .  "Yes !" I said, "as part of  an ongoing care for patients, doctors should provide eyebrow and eyelash accessories as part of hairloss due to chemo!", which floored him.  Well it kept him grinning for a few minutes. I have no idea how to do eyebrows, mine were low maintenance when I had them,  so I have to  keep asking my daughter to help out!  Annie finally got me eyebrow stencils, thank god for that, makes life so much easier. Don't even ask me about eyelashes, I'm still staring at the false eyelashes wondering how I'm going to glue it on... knowing my luck it'll adhere to upside down!! eeekkk     Hair Growth After Chemo

My Doc keeps reassuring me I'm doing really well, and I'm dealing with it well too.  Huh if only he saw the sobbing, and sulking and moaning I do . (well none of you get to see it cept my kids and brothers... well that's what brothers are for!). Kids more because I love when they hug and hold me and tell me it's OK.  It's been a real ride down this rabbit hole and I've got 5 more weeks to go.

So here's the thing, I think I'm hooked on food porn, my appetite is totally shot to smithereens but with one of my close buddies posting Malaysian Specialties and my family and friends posting all the dishes they're eating, I'm addicted!  Which led me to search you tube for cancer friendly meals... lemme tell you, there is a LOT out there!!!  Let your common sense guide your tummy's path is all I can say.  I've turned into a pesco pollo vegetarian, even the smell of steaks on the grill turn my tummy.  And correct you want a slight tang with your food, so dishes like NOT SO HOT Tom Yum, Pho, fried glass noodles etc are so much more appetising.


Curry Mee

Asam Laksa


 (I sent out a distress call to all my close friends for sour plums!).   I've actually been toying with the idea of doing a small vlog on cooking for your self as a cancer patient.... well I might have a go at it once I get the wind in my sails again.

Dried preserved plums!
Anyway just wanted to touch base with you all, thank you for posting all your positive notes on my blog and fb wall as well as my Insta account .  To those who gave and gave for the GoFundMe Account that Annie hosted, thank you from the bottom of my heart ( a little bird told me I had so many of you caring for me) Reach out to me please anytime if you have questions or if you have answers.

Thursday, November 30, 2017

Down the Rabbit Hole - Dodgy Daph's Medical Adventures Pt 5

I was discharged from hospital on Friday, a faster exit the nurses haven't seen! so much so I left my computer cable behind! (luckily the nurses kept it for me!)  I thankfully went home and slept as much as I could, with this funny taste in my mouth (er hello I did brush my teeth ok) and a constant grip on my thermometer,  as I had to make sure my temperature did not go up.  After the first day back I actually went for a walk with my brother and had a little smoothie as  a treat afterwords, no smoothie  no walk.!   The smoothie helps keep my mouth cooler as it was beginning to heat up.  Having home cooked meals a blessing and being able to have family around. 

No Smoothies NO WALK!
For the first 3 days after my first treatment, I was ok, I could still go for walks , and though I was really tired and took a lot of naps (NOT NANA NAPS K!!!), I was doing pretty good, the doctors were happy the toxins were flushed out of my system and I was going through the normal after effects. 

BFF just arrived , had an appetite and was going for it!
After the 3rd day, oh my goodness!  I thought my mouth was on fire!  I could only eat ice chips or really cold watermelon, no ulcers in the mouth though. The headaches, I used peppermint oil to begin with as I was already on so much medication I was trying to give my body a break but the headaches was just a killer  My mouth felt on fire,   I tried to sleep it off as much as I could, but I was up most of the night gulping water.(how do the damn fishes do it?!!)   The next two days were awful , the headaches were so bad I started popping panadol like candy and I don’t usually self medicate but, my jaws ached and then my gums started to swell and ache.  No one prepared me for this…I lost my appetite, preferred to crunch on watermelon as it was sweet and kept my mouth cool, I said no more meat, it was too hard to digest , I’d stick to my fish and occasional chicken diet that I had stipulated. 

My brother was worried I had dropped 4 kilos very fast and that was not good , Though my best friend cooked some phenomenal food at my place and went scouring everywhere to get the freshest ingredients, I could hardly taste anyting let alone had much appetite. Believe me when I tell you fruit juice or smoothies becomes your best friends.!

They cajoled me, they stern talked me, and made me go out, even for a little while,   wallowing in my very grumpiness, I said "if I want to leave when we get there we go ok, I'm not good with a lot of people at the mo" My brother nodded his head , my bff Peggy said "surrreeee" . (they are so sneaky)

Ol Grumpy pots and Peggs
It turned out to be a beautiful day, a seaside cafe, lovely sea food , cold beers and I had the best glass of  san pellegrino  sparkling water with fat wedges of emerald green lime.  Ahhh it felt sooo good!  Fresh crisp bread, salt and pepper calamari, which were tender to the bite and oh loads of other goodies I couldn't eat but watched.( yeah and drooled.. I"m not ashamed to admit!)  Eventually the heat got to me ( I know, and a Malaysian to boot, where is the shame eh?!!) and told them to take their time and finish I'll go wait in the car. 

For the next few days everyone watched me like a hawk, trying to ensure I ate as much as I could, I had another lumbar puncture(I hate those long needles) and then another chemo out patient treatment that was a very toxic,  The Vincristine chemo dose they used is strong and aggressive, you feel the cold in your hands and though it's only half an hour treatment, they had to stop several times so I could get some feeling back in my hand.  It does affect the nerves. 

Poster Child of getting toooooo comfy in the Hospital

I guess it was another day for "captain bed".  I must say one thing though, you have to make your bed your oasis.  You're going to spend a lot of time in it so, get fav sheets, blankets you like to snuggle with, pillows you just want to sink you head into and your own personal home theatre.. believe me it helps!

I  also got my cold press juicer so was juicing the reds in the morning and the greens in afternoon. Believe me, raw food works if you can't eat it , drink it.

I vant my bloooddd . muuaahahahhaha
My brother headed off, leaving me in better frame of mind and pep talking me all the way.  It was so hard letting go of my brother, you don’t realise how much you want your family around you, I had another week to recuperate before I start B Cycle of my protocol.  

My scalped ached , and I was massaging it  a bit on Tuesday,  I had brushed it several times before tying it up but nothing major.   Wednesday though was a bit of a carnage.  I felt the texture of my hair strange so I undid my bun and brushed it out and clumps of hair came off on the brush!!!! (ok I was prepared for this, so I was kinda calm ) .. so I pondered, do I wash my hair as I’ll probably have it cut tomorrow with Annie or Lani. ( can you imagine, I'm still faffing about washing my hair???)  Because I had to go in for my CT scan that afternoon I was  not sure if I could have it cut afterwords.   So in for a penny  I went in and washed my hair, was blinking rapidly when I saw how much hair was filling up the shower drain… eeekkk, finished rinsing my hair  and put it in a towel then dried it and OMG  I had a freaking rasta dreadlock mess … every time I tried to pull more hair out of the knot more hair would fall out!  
I quickly texted Nora my sister in law and called for help as I didn’t think I could handle the total fall out, literally.!  She called back and said her hair dressers would be able to clip my hair now if I was ready, I said yes absolutely.  We went in and they started clipping my hair, Nora grabbed my hand as I was in tears, its more symbolic the hair, like the final frontier to admitting you are well and truly into the whole chemo cancer thingy. 
Anyway, the girl clipped a beautiful lotus flower onto the side and back of my head and they told me afterwords that it was compliments on the house.  Nora and I walked outside and I felt strange with small breeze blowing though my hair.  

  We went to the hospital, and had the CT scan done, the orderlies were saying I rocked the shavings on my hair, well, what was I to do, I felt strange, like my neck was too scrawny for my head.  Sent a pic to my brothers, who of course said I looked like mum.. duh At least I had a few more good days before I went in for the next cycle which I was told was harder that what I'd just been through.

Thank you for reading my blog and for being so supportive of me and of course of my buddy Annie who's set the date to cut her hair on the 15th of Dec.  Our link is .  It would be great if you could support us, Annie will also go on radio and will be on "My Weekly Preview" mag to promote her hair auction and cut (we're still arguing as to how short she'll go!)

The New Me

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Wednesday, November 15, 2017

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 and what it really feels like to be a cancer patient.  I'll be back

Thursday, November 9, 2017

Down the Rabbit Hole - Dodgy Daph's Medical Adventures pt 3

Well when they say the sun will always rise and moon will always shine and the stars will come out at night, "they" are not wrong.

I woke up to yet another  new room mate.  This was the third one so far (bleedin heck what am I a permanent fixture?) . anyway his name is Harry, he's in his 80's and he's got a wicked sense of humour.

I decide to leg it for a "real " latte before "coffee man" gets ahold of me,  and asked Harry if he wanted one,  "a chailatte" please he says.  Oooeerrr very new age of you Harry.  As I return to the ward after nodding and greeting all the nurses and students, I'm unfortunately "caught out" by coffee man as I am about to step into my room.  "Oh, two coffees is it, dunno why you'd go pay for those when you get them for free here"... I am mortified, I didn't want to hurt "coffee man's feelings" . so I said,  "it's a lattee.."  He says "I can make them too! This is a 15 hundred dollar machine, it makes everything, I can even do espresso's..."  Suitably chastised I promise him I'll try his latte tomorrow.  I hand over the Chai Latte to Harry who's grinning at me, naughty man.  The Nurses come in and asked him how he slept, he said "I didn't sleep a wink what with Dx snoring away all night" . The CHEEK!  The nurses fall over laughing.

Annie comes in to take me downstairs for lunch, and as we're about to tuck in, I get a call from the Insurance Agents of AIG.  They're sorry to hear about what's happened, can they have some details and can I send it to them.  I look at Annie, I guess I must be a one stop admin centre eh, will have to dig through my e mails now.  We head back up to my room.  The doctor comes in to visit and says "I know you'd like to be discharged today Dx but we'd like to monitor you since there's been a slight increase in the fluids in your lung after the biopsy."  I look at her like I've been sentenced to prison.  "However we can give you a day pass for the weekend, you can go home for the day but you'll have to be back here by 6pm ok?"  OH YES!! (cue : zippie de doo dahhh zippie de day)

The next few days was a small slice of heaven,  I'd get picked up either by Annie or Max and deposited home, get to cook some real food and be back in the ward in the evening.  "all right for some " grumbled Harry,  'well at least you're taking it for the team" he says.   However on one of the last days of my day pass, I get a disturbing call from the AIG insurance agent, this one is not the lady I spoke with.
 He's rude and abrupt and says "your insurance is void". 
I blanched , "I beg your pardon?"
Ya you didn't buy the insurance while you were in Malaysia , so the insurance is void.
 I said " well first of all , it doesn't state anywhere on your website that it has to be purchased from country of origin, and secondly why did you take my money if it was not going to be in effect?"  "You better write in to the company and explain then " he says and rings off.
 This then sets off my anxiety and so I ask the kids to send me back to the hospital early.  I spoke with the doctor and told her what had happened, she told me to engage my solicitor and also would get the social worker on to me.  She reassured me again, not to worry, most important thing is for you to get better, the finances will get sorted out later.
I've got a PET Scan and and echo scan to go through and then I'm done with the tests. 

Rejection... oh the pain
The PET scan is similar to a CT except you are injected with radioactive glucose so the cancer cells are illuminated when you're scanned.  As I'm wheeled in to the room again I have to tell them my name and birth date.  For GOD"S sake, does everyone have to know my age! I tell them.  In the back ground one of the orderlies pipes up, "it's ok, I like older women"!  Cheeky but I'll take it.

The Echo is like a sonar to check my heart (yeah yeah get on with the jokes about a bleedin heart will ya... everyone is a comedian) and it takes about half an hour with a technician who goes over certain spots to catch the readings. Because we're so close to each other I can hear her tummy rumbling, she laughs and apologises, "must have been something I ate, it's just going off isn't it!"... Well better you than me !!  Then I'm wheeled back , another orderly cracking jokes, so much so that we end up on the maternity floor !  I'm looking around and saying "hang on this does not look familiar at all" and the Head Nurse says "having a baby are we ?"  everyone cracks up and the orderly is shown the way back out to the lifts and down to where my ward is.  Phew. adventures abound even in hospitals.

They're going to discharge me, Annie is calling to see what time I'm to be "sprung", I have to speak with the Hematology Team, who are still keeping pretty stumm on my diagnosis.  So I asked the attending Doctor, "seriously though, you say it's suspected lymphoma, can we confirm that it is?"  and this was his cryptic reply,  "sometimes when we see a shadow of a cat , it's a cat, but if you go around the corner it's a dog".... I look at him and hold my self back from strangling him.  He gives me a benign smile, one that says " I know what you're thinking but you can't do anything about it!"  HAH!  Anyway, the tests will take longer, some of them are in Brisbane, so I'm to go home and the week after I'll be called in to the Adem Crosby Centre to meet with my oncologist to discuss the results and treatment moving forward.  Right e o, Feeedoommm , Freeedoooommm, Freeedooommm (George Michael sing it bebeh)

Whilst I'm home I have to update all my family on what's going on so far, yes everyone is frustrated because there has been no definitive diagnosis, but this is the calm before the storm.  I go back on my daily walks, I start the budwig protocol and do as much research as I can regarding lymphoma, diet and lifestyle excluding the "woo woo" theories out there.  I'd love to try alternative therapies as opposed to chemo, but a lot of them are integrative and can be done here.  Ok, we're getting some where. 

I get my organic flaxseed oil from
Annie and I have a quiet drink together, she say's "I miss my drinking buddy!"  lol, yea no more martinis for now until we figure out what the hey ho is going on.  Annie's already taken me to the Cancer Support group in our area.  She says " Daph, we need to set up a "go fund me" account to help you out." "if the insurance folk and not coming into play how are we going to sort your finances out, you can't work, your daughter is stressed out as it is with her job and your son is still in school".  I look at her " Not charity Annie, I don't want charity, can we just wait and see how this pans out.?"  Eventually she gets back to me and says she's going to pledge to cut her hair to raise money for me.  My eyes pop, "are you kidding me?!! all that long blond hair??!!"  "I do it for you my friend, I want to pay for your rent and if this helps than I' m doing it"   I of course start to blub like the big girls blouse that I am, who else would do this for me  who else? : Down-the-rabbit-hole-with-Daphne

To date : Annie's launched "down-the-rabbit-hole-with-Daphne  Go Fundme, a few days ago on my FB timeline, she's organising a radio interview with the local radio station here and is hoping to build more traction with some of the other cancer charities.   I'm leaving you with the link as I promised her I would write about it in this blog, we were going to cut our hair together but I've had to cut mine off as it started falling out in clumps so hopefully we'll be able to do a real "event" out of Annie's hair cutting ceremony.
If anything to auction off your hair for cancer is a HUGE deal.  Thank you my dearest friend. X
In the mean time my lovely friend and lawyer  Daljit is hounding the AIG insurers, apart from an official letter to state they won't be honouring the insurance, they've been rather quiet and not responding to either the Hospital Admin or my lawyer. 

It's a lotus flower 

This blog is not current to timelines, it's a way for me to express what I went through leading up to what's happening in real time.  But that's a story for another day... 

Monday, November 6, 2017

Down the Rabbit Hole Pt 2

I hear voices, nurses talking, some groaning, beeping... the night has not gone peacefully, Morpheus deserted me completely, the cad!  Eventually I'm wheeled to the 4th floor which is the Respiratory Unit of the Hospital.

They wheel my bed into a twin sharing room, and tell me to settle in as the nurses will come to do the rounds and the Respiratory Team will have a chat with me.  So I look around me and I'm sharing the room with another lady, who's also had a bit of surprise as she was actually on holiday when this happened to her, her family are visiting so I draw my curtains and get all my gizmo's out and settle in. I then ask the nurse if there is any breakfast as I haven't eaten at all since yesterday, so she finds me a sandwich first.(good ol sanies eh...)   I've informed my buddy Annie where I am as she wings in with a Latte .. bless bless bless. and my daughter the heavenly child will pop by with my son Boney M after work/school.  Ok we're set.

Coffeeeeeeeeee (or cofe fe ??) 
Annie is looking at me, I've known this woman since we were kids in school in Hong Kong, I can feel the wheels of her mind cranking up.  "Daph" she starts - this has been a shitty week for you" , I hold up my hand and say " It is what it is, and we'll deal with yah?"  "absolutely lovely, I'm here for you, I will do what ever I can to help".   Done.
 The nursing team comes in, introduces them selves, writes their names on to board so I know who's on call, and show me how to buzz them.  They are a lively, chirpy happy bunch, with easy smiles and a shoulder when you need a cry (and believe me I cried plenty).   A while later the head of Radiology and her little cutie pie intern comes in, obliviously I'm not a hospital regular so now days  there were no more doctors gowns with stethoscopes hanging from their chests and intense I know it all faces.  More like laid back clever people , dressed as hip as today's trends would allow with a very sympathetic attitude and  a lot of empathy for the patient.  

I didn't actually have their pics, they'd be mortified!!! 
The chat started with "Dx so you have been told that we need to do more tests on you, we suspect it could be Lymphoma, we need to do a biopsy and take tissue samples out via the CT scan imaging, do you have any questions you'd like to ask?" .. "yeah when can I leave?" .. No? ok so what is Lymphoma.?  It is a type of blood cancer that begins in the lympathic system.  Everyday our bodies carry stem cells and cells to all parts, cancer cells replicate and die, however if one of the cells becomes infected  they undergo a cancerous change, and multiply in an uncontrolled way, these  lymphoma cells, form collections of cancer cells called tumours, in lymph nodes and other parts of the body, hence the mass on my lung.  Ahhh . (not so light bulb moment) 

Annie's mind I can see is already gong into overdrive, and she's shooting questions out, the Doctors won't give her any more speculation, it is all suspected for the moment and they can only find out more after the biopsy.  Oh yes the biopsy... do tell..  "Oh don't worry Dx you'll have lots of local anaesthetic so not much discomfort".  "Oh I shall be awake for this one then shall I... lovely, can't wait.. bring it on."
Unfortunately there was a bit of a mix up, I was not supposed to have eaten anything as they scheduled the biopsy that day so since I had,  they rescheduled for the next day.  (suspense much)  I did however mange to explore the food courts in the Hospital..  and got my kids to sneak me in my fav pack of salt and vinegar chips for possible snack time as I believe this is the case worldwide,   Hospital Food SUCKS a big one.   

Yea, breakfast for champions...
The next morning, the nurses come to to the shift change and they all look at me and say NIL by mouth!  OK OK I get it, do not feed the animal in bed 26, geezzz.
To say I wasn't shitting bricks sideways  regarding the biopsy would be an understatement, the nurses brought more gowns in for me and an antiseptic wash for my shower,  they then wheeled me down to radiology, (hey I've been here before!)  The orderlies are so funny, mine said "Hi, I'm Steve and I'll be your uber ride for the day.!".. uh huh!.  They ask if you need a blanket, if you want socks .... who trains these people.. they're great! 

Eventually I get wheeled into the CT scan room, so what's going to happen is they will use the CT scan imagining to get the perfect spot to go in from my front , avoiding ribs etc to lessen pain.  The Nurses get me on the gurney for the CT scan and make me wear the gown opening up the front.  It is protocol to ask my full name and birth day every time they do anything.  They then send me into the dough nut several times, stopping above my ribs and neck , they bring me back out.  The Doctor who is a lovely lady comes in and introduces her self, she says she met me yesterday and that she'd try to minimise the discomfort.    First they had to wash the area and prep it, which was on my left breast.. oh yeah well that mammary was about to have another memory! ha ha..  Then the dressing sheet, more in and out of the CT scan, monitors winging left to right and she said "ok I'm going to administer your anesthetic, I'll try to go as easy as I can" ,  'wokay" me thinks.  I ask her to just keep talking to me and explaining what she's doing as it made it easier for my racing brain to cope with the over imaginative thoughts.  As she was sinking the very long needle into my chest, I did to my inner warrior goddess shame, the "pain noises" , and  you know what, the Doc, apologised to me,  "I'm sorry Dx it won't be much longer we've gone through one layer I need to get to the lung now so you won't feel anything,"  "Urngghhh" yeah oook, but that .. hurts" .   "Just a bit more I'm sorry, tell me about your kids, where are you from , you have a very distinctive accent" ... And finally the needle was done and she managed to mark a spot.  I heard a clank and asked her what she was doing, "oh I made a small incision to insert a tube in, oh right, felt like some tapping on my muscles.
" I'm gong to send you in through the CT scan again as I want to make sure I've got it just right ".  Oh sure,  So when I come out of the CT scan I ask her how many samples she'll be taking, she says about 2 to 4, the more we can get the better.  I look down and I see all manner of steel things sticking out of my chest.. oh hey.   Then she says "Dx I'm going to use this  to take a sample, it makes a clicking noise when I press it like this" (it looks like for lack of a better word a mini pooper scooper... SERIOUSLY!!), it clicks and she blinks her eyes, riggghhtt.  I'm just going to watch her because I'm not in the land of pain anymore, I'm now fascinated at how doc's going to get all my tissue sample.   So she goes in the first time and "click" blinks her eyes and looks at me, OK.. yep, second one does the same,  so I ask how many more bits of my lung are you taking Doc?  and wouldn't you know it, behind me is also another Doctor , the voice says "ve vill need as many as ve can get now, so ve vill not haf to go back inside and do another biopsy, it's safer as well madam and ve can do our testing faster"... right right... I"m trying not to giggle, my sense of humour just has no timing at all.
Four samples later, they CT scan me again before they pull everything out so they get the angle right, and all I get is a transparent dressing the size of an Orange along my inner to outer breast ...(not a fair exchange... a glass of bubbly would have been appreciated) 
The Doc says "good luck Dx, we'll try to do as much as we can but its a long weekend here so the tests will only be in on Tuesday next week,"  "Thanks Doc, I mean it, you've been so good to me."
The nurses come in and say "don't move, we'll move ya!"  They slide me onto my bed and wheel me to my room. 
Annie is there waiting with a coffee, that I can't drink as I have to lie flat for the next 2 hours and so she improvises with a straw... that woman is magic.  So she wants all the deets, once she hears the results wont be in till Tuesday, she's already asking if I can be discharged tomorrow so I wont' have to be twiddling my thumbs in hospital.  We'll ask the doctor!  Kids come to visit and bring me a meal, and change of clothes (like i need it now)

Staking out the joint to see if it's safe from Doctors! 
Now all this time the nurses always ask me if I'm allergic to anything, I"m like "uh not that I know of", that evening I actually have a shot that has to be administered by the nurse.  "What is it?" I say, it's Clexane stops unwanted blood clots from forming, right e o.  So she needles me in the belly, "ouch that stings " I say, "yeah it will for a bit" says night nurse.  Okk.  10 minutes later ... Ur nurse , it's still stinging.. "hmnnn let me see do you have a rash , no, ok lets give a bit of time."   20 mins later... "nurse I dont' feel so good".. " Ok let me come back from my round and check on you" .  30 mins later my mouth is tingling and my tongue starts to swell,  she looks at me and says yup your tongue is swelling, I go get the doctor.  In five minutes it's like Grey's anatomy, I have one emergency doctor, one doctor on call , one attending doctor , nurses and all asking me to stick my tongue out , 'yes it's swollen" can you breathe' yes' lips still tingling yes... and then GET THIS, (oh sods law I hate yee)  OF ALL THE TIMES, when finally the "Mc Dreamy" of doctors is before me, he has to attend to me.  He needs to get my heart rate via the ol stethoscope, so he discreetly pushes it under my gown that is of course now bound in the front and because it has not been tied due to the biopsy... yes the left flap drops open and everyone has a view of a twin peak... , he mutters an apology and quickly pulls it back.  Stands next to me and asks more questions, the last one being "so how do you feel now.?".. I look at him and say, "well what do you think after having to stick my tongue out at more than 5 strangers in a a room and having no idea if this is an allergic reaction " ... "right, understood".... My brain flips me the bird and says "smashed that one D"
Eventually every one disperses, but they leave the defib next to my bed just in case.  I fall asleep in a wave of mortification, irritation, and dying to take  good swipe at Murphy's law.... don't think I'll see McDreamy again ....