Halfway Mark

Well today was a bit disappointing.

I received a call at 7:30 am telling me my white blood cells and neutrophils were too low to proceed with chemotherapy today!!!!!  Noooooooo........I was looking forward to getting this one over and done with!  (No wonder I've been so tired though).

Well that doesn't fit within my schedule!  I have appointments for work booked on my return, Mum has flown down for the exact time between chemo and when I start feeling well again plus I dont want the cycles messed up because we've booked a quick trip to Port Douglas in October. Luckily, I booked it for the second week I'm well, leaving 1 week's leeway for this circumstance.  After having cancelled our trip overseas I'm not sure that our travel insurance will be so helpful a second time with an existing condition.

Anyway I convinced them to reschedule to Friday, all going well instead of a week away.  It means 'The V' have to do a little more juggling than normal - oh well, if I'm going to be inconvenienced by the C then it can be on my terms!! (a bit of tough talk there :) )

I have been sent my appointment letters for my MRI and the Breast Surgeon in September. This will tell us how the Chemo is working on the tumours (Fat F*&^ and his friends). They are hoping that some have gone altogether or at least reduced but the softening of the density of the breasts is a good sign.

It will also provide information as to whether the schedule will change to surgery then more chemo or stick with the current plan of the second chemo drug cycle then surgery.

Now just waiting for Friday!

Dodgy day

Sunday (4 days on)

Today is always 'weird' day. Everything dodgy seems to happen 4/5 days after. My mouth is strange and thick, nothing seems to get rid of the taste. Food and drink is very unenticing. No energy to share either and watching tv seems the only option but the noise becomes annoying. So what to do - sleep, listen. I realized I forgot to get my e-reader organized before today, but not sure that would be successful either.

Mum is here to help, God bless her cotton socks! and has washed every piece of fabric, and sock in the house possible, I've never seen my laundry so clear for a long time. So she finally is sitting and reading the paper.  Mum arrived the night before my appointment at 'The V' and came and sat through the duration with John by my side. It was a long day starting at 9 am and finishing at 2:30 pm before going home to bed for a nap. 

I came home to some special surprises on my doorstep and a delivery of a homemade dinner, which all put a smile on my face to go to sleep with. Thank you all so much for your thoughts and kind gestures. 

Charlie, the cat has been particularly clingy - not sure if he is being more intuitive than normal or if he's just looking for a warm body to cuddle up to with this cold Melbourne weather?????? Hmmmm...either he really cares or he's just a user!   Getting lots more cuddles from Alexander, Andres gives 'side' cuddles so he doesn't 'hurt' me. 

Of course you never stop being a Mum. So regardless of how I feel, I've still got to make sure they've got the right uniform for the day, if they have fruit and some 'verbal encouragement' to get ready in the morning.

Sleeping a lot more this time. I hope that these symptoms will go away with the new drug for number 5 dose.  I have 1 more to the half way mark! Gotta be excited about that.

Looking forward to feeling 'normal' again.....any day now!!! :)

1 day to go for 3 of 8 treatment

So I am enjoying my last day of good health before they make me sick again :(

John took to my head with the shaver again, so we got a bit closer to the scalp on the hair that is left.  It hurts if it's too long and sticks in to whatever you are wearing on your head like a prickle! So he too was very brave and sheered me like a sheep. I forgot to mention that I look like George Calombaris with no hair!!! Lucky I like his cooking.

The past 3 weeks of shaved head and wig wearing does come with some benefits.....

1. it takes me 5 seconds to do my hair in the morning, I just pop it into position and brush it a bit
2. no more hair stuck in the shower drain
3. you dont have to move your hair off your face when putting your makeup on or brushing your teeth - there's no hair
4. I have more things in common for conversation with my friends' bald husbands......"so how often do you shave?  what size blade do you use? what kind of shampoo and conditioner do you use?" LOL
5. I can try new hairstyles, both in wigs and growing back into different styles (I would never have cut it this short normally!!!!)

Still, windy days always make me nervous.....you can see the edge of the wig when it blows off your face in the wind.  It hasnt blown off completely like I thought it would, so that's a good thing!!

I went wigless in public for the first time, at the snow.  I had beanies upon head caps so there was no need to. I looked like everyone else on the Mountain.

With treatment no. 3 tomorrow, I decided to mentally say goodbye to my little troublemaker tumours.

So I drew them out based on the measurements provided from the MRI, so I could get a good visual on the 6 little b#$%ards!

Here they are against a 5c piece (the biggest ones are considered average in size, not big, not small). With cancer it is more about what they are made of and how slow growing they are. Fortunately for me they are oestrogen receptive and slow growing:

I think I will give them all their own names....but not ones that I could publish on this blog! :)

Thanks Kumar for the cartoon inspiration  ;) 

Hair Be Gone!

Be Gone my friends

So Saturday morning my hair, forward of my ears fell out!!! 

Faced with taking my mullet out into the public, it was time to do the inevitable. Thank you Heidi for shaving it for me - it was done with a lot of laughter, beautiful sunset and yummy treats - but the wine will have to wait!  I think I was numb realising I had to be compliant and follow the rules of these chemotherapy side effects. I'm not much of a rule follower, I would rather poke holes in the rules to test for their usefulness, than comply. 

Sunset Shave

Some weeks ago, out with a friend, we were discussing the practical problems of wearing a wig in windy Melbourne in winter. What happens if it blows off or the kids grab me too hard and take my hair with them? or I have to chase it down the street in the wind like chasing a pet who's seen a promise of freedom! LOL.

Then came the topic of fake eyebrows. When with the girls at the wig shop, I asked about them as they sold them there. He recommended against them. He said they look like bad caterpillars!!!!!

Then that lead to what if it's raining and the adhesive moistens and you walk into a shop with half an eyebrow hanging off your head and worse still, you try and stick it back on in haste and end up with a monobrow!!!!! Ahh... these things I know nothing about - yet! 

On the subject of beanies and caps, how do they stay on a bald head? Do you use double sided tape to keep it from rising up and falling off? Wouldn't it just slip off with no friction to hold it? Then I thought from a practical point of view, Velcro could work, you could stick on the friction side to your head and the knit would attach to it.....right?! 

Okay, I get a bit delusional in my silliness to deal with these new problems to solve. We were crying with laughter contemplating my new first, or second world problems.

So here is my new hair (it feels like you are wearing a cap under your hair - weird!!!).

New Hair

So chemo no. 2 is done and dusted! 6 to go, but only 2 to go for this hairloss drug combination. Hopefully, my hair will start to recover after August. I have 2 chemo days in August due to the longer month.

Scans booked for September to check the effect of chemo - looking forward to that is both nerve racking and a relief to get to a milestone.

16th July - Chemo no. 2/8

Yesterday was chemo no 2/8. Meeting with my oncologist, she said depending on how the C is tracking I may not have to go the whole 8 sessions...yoo hoo!!! I'll affirm that goal. My White blood cells/platelets were low but not enough not to proceed with chemo.

After some problems with my IV, and a stupid neck kink causing an arm pain, we had to sort those out before administrating the radioactive drug. They needed my arm pain free so I would be able to differentiate if there was pain of the chemo drug going in. So it was a long process before finally getting going.

I had mum and John sitting by my side distracting me from the goings on. I didn't get the private room this time...damn it. I was facing some interesting character. 

The nurses were lovely as always. Very patient sorting out what was going on, covered me with warm blankets and heat packs to solve the kink in my neck. They should be paid more!!! 

So the same thing happened as last time half way through the doxorubicin where my world went dark and the sinus headache came. 

So pretty much the hung over effect, but more like I was drunk this time. Slurring my words and unsteady on my feet!!! Can't wait for the next reaction on 5 August. 

Straight home to bed and feeling much better today. Just hung over now!! Could use a real drink!!!

Had a lovely pre-chemo and friends birthday dinner at Hellenic Republic with the lovely Maria. It was beautiful food and good therapy!!! 

Mum is heading home tomorrow, so back to chores again. She has been a treasure sewing all the holes in our clothes washing and spending time and helping with the kids. Even spoon feeding Jana during our food avoidance issues she has.....very frustrating my girl. I'm certainly not going to be doing that for her. Not sure if its a power thing or she really has a fear of trying new foods. 

Thank you for your well wishes yesterday, they always make me smile. I was feeling a bit sad yesterday, maybe it hits me whenever I go to hospital, whereas the other weeks I feel like any other mum, wife person going about the activities that fill the everyday life. And then .....I'm reminded whats inside me. But not for long - the oncologist thought she felt the 1 tumour she can feel, that it was softer. 

Anyway, more scans after the 4th chemo to check the progress and then decisions on whether to keep going with it or proceed with surgery instead will be made. 

Kids are keeping me laughing - I asked Jana not to touch my hair so much....trying to preserve its natural life. Then she imitated a hair falling "nooooo - I don't want to leave my home,  noooo" acting out a falling hair. Very funny Miss Jana. "at least you don't have to worry about nits from us Mum" always looking on the bright side. :) 







Sent from

11 July

Ha!! I still have my hair!!!!!!

For all of you wondering if its gone yet? It is falling like the leaves of autumn but I have a lot of hair so it might take longer than they say :) Just 5 strands here and there, sometimes it looks like I've been holding our cat Charlie for too long :(

Anyway, its not long now until my next chemo on Wednesday. My Mum has arrived from Qld to help me out after Wednesdays session at the V. Its good to see her. The kids are loving having Nana around. Jana and Mum did some sewing on Friday while I went to work to make up some time and catch up before having next week off. John has been a great help taking days off here and there to help out.  He has been helping with the housework more too which is lightening the load.

I have finally felt good this last week, except for the very sore mouth. Mouth gargle all day and sucking sugar free lollies seem to be helping. Hopefully they will sort out my pre-meds this time to something that doesnt make me dizzy. I seem to have got my stomach under control only sometimes eating the wrong thing and being a bit sorry for it later. White wine tastes like vanilla - go figure. Red wine tastes very peppery even when its not but bubbles tastes like bubbles :) I have had the odd glass over the past week or so.

About 5 days after my first chemotherapy, I received a call from the hospital dietician. She said the magical words to me "you have so many things going on with your body that you just feel out of control and dont know where to start". Heeelllloooo - where have you been? Someone who understands what I'm feeling right now! Normally, you have 1 symptom in your body and you know what it is or what's caused it and you deal with it. But my side effects had everything going on and trying to address each one had me confused and a little anxious and losing appetite and weight. Finally, she gave me some tips with eating that has solved some of the side-effects but not all.

This chemotherapy will be round 2, only 2 more of this drug. Yay! This one causes hair loss so the sooner I finish it the faster my hair will start to grow back!

Some doctors just shouldn't be! My visit to the oncologist was unpleasant. My scheduled oncologist was delayed so a stand-in took my appointment. But I think I interrupted his coffee before his clinics were supposed to start!!! He was awful, condescending, belittling, and intolerant. When I described my side effects (which was the point of the appointment post first chemo) he told me that they aren't side effects, I need to learn to chill out and the cancer treatment "is what it is!!!" Then pushed me out the door with blood test requests that I didn't know what they are for! So rude! It made me very angry for not standing up for myself and putting up with his attitude. I'll make sure I re-schedule in future rather than see him again. I have been lucky so far with the doctors etc., so 1 bad apple is not too bad.

I visited my gym this week after canceling my membership. I told Pauline why and she was taken aback because I seemed well and I told her calmly without being upset. She expected me to be a blubbering mess. That's because I am pretending there's nothing wrong with me, I talk about the cancer as if it's somebody else's problem! It is still difficult to own it, or associate it with 'I' or 'me'.

Dread is starting to set in as the days get closer to my next dose. I am enjoying my well days more than ever but I know that it could be a lot worse and this is NOTHING compared to what other people go through!

 

I bought a nutrinfusion for juicing. I am now eating buckets of kale, radishes, chia seeds, Brussels sprouts etc in liquid form. It has been interesting what the final taste is - the juice combinations are quite yum. Hopefully, I can keep up my nutrition better with this on hand, easy and quick to to make and drink. Tried to hide some rocket in a strawberry milkshake for the kids this morning - it didn't pay. They figured it out - damn it, not enough strawberries!! Jana is very unforgiving and you only get one chance to trick her.

I've learned about foods that cause anti-angiogenesis, constriction of blood supply to cancer tumours. Interesting information - one of my drugs for chemo is an anti-angiogenesis type, there is a Dr William Li who is experimenting with high potency foods and the role they play in anti-angiogenesis for cancer tumours.  I saw a Ted Talk with him and it was very interesting. I notice the McCallum Cancer Institute is also doing some studies in this area. He has compiled a list of natural foods, and Japanese Green tea is one of the highest in potency, higher than my drug (in what quantities I dont know) but so is red wine and chocolate! ......Two of my favourite treats!!! I figure It's worth capitalizing on the opportunity to eat more of these foods in parallel with my chemotherapy :)

Green tea
Berries
Citrus
Apples
Pineapple
Cherries
Red grapes
Red wine
Kale 
Bok Choy 
Soybeans
Maitake mushrooms
Licorice
Turmeric
Nutmeg
Artichokes
Lavender
Pumpkin 
Tuna
Garlic
Tomatoes (cooked)
Olive oil
Grapeseed oil
Pomegranate
Dark chocolate 
Cheese (particularly Emmental, Gouda, and Jarlsberg)

For those who are interested in reading more:

http://www.eattobeat.org/pages/16/about.html

1st July - Diagnosis

So on 5 June, I was diagnosed with early, multi-focal breast cancer with 2 lymph nodes impacted. There are 6 tumours hiding in my 'uninteresting' breast. They are invasive so I am told I must have a mastectomy and Axilla clearance (removal of lymph nodes from the armpit).

And so I became the reluctant passenger on this freight train of breast cancer.

They signed me up for the Breast Cancer Network of Australia - my new club, gave me my exclusive sample bag, complete with journal and information volumes before I'd left the hospital. It's been fast paced with little space for catching a breath.

I have had bone scans, cat scans of my major organs and breast MRI to give me clearance of any secondary cancer. Yay! In the scheme of things, we celebrated with those results, quietly and I put my breast surgeon back on my Christmas list. At least she delivered the news fast!!! She's good at that, with the initial diagnosis delivered before John had even sat down.

Over the next 9 months, I will have 8 doses of chemotherapy, mastectomy (elective bi-lateral), radiotherapy and a hormone preventative course (for 5 years).

For chemo I have had 1 of the 8 doses. Friends say I came through the first one pretty well. I however feel like I'm in a constant state of 'hangover', we joke, 'without the good time'. I have chemo every 3 weeks until Christmas. 15 July is my next dose - looking forward to that calendar event!! Not.

For the technically inclined, or those familiar with the regime, I'm having 2 drugs administered 4 times Doxorubicin and Cyclophosphamide and then Docetaxil 4 times. The first 2 kill fast growing cells (cancer cells, hair follicles, fingernails, skin and mouth cells) so why my hair will fall out over the next few weeks (eyebrows and all). Great savings to be made on laser hair removal :/

Along with this journey came a visit to the local wig shop with 3 friends (mums from school - thanks girls) having a laugh, and cutting my hair to a short bob to get the kids used to my short hair. I thought I could defy everyone and keep my hair, my medical support team kept asking if I'd bought a wig yet?? Acceptance of things is coming slowly and quietly as I learn I will join this train ride!

The trick I've learned, and something my dear friend Lisa taught me was taking only the package that is being delivered, opening it, learning it, then wait for the next delivery without wondering what's in it. And especially only opening the package that is addressed to you. Cancer is unique for each person in so many ways, and other people's stories aren't mine. Even the good stories can be picked apart, and the differences then make you question - so does that mean it won't be a good outcome for me?

So, I am getting back to work slowly, my bosses have been great about everything. They are being very flexible and carrying my load of work when I cant (I'm the only one in the sales dept). And, ironically, their charity of choice this year was the Breast Cancer Foundation. My work email signature has had that we support Breast Cancer Foundation for the whole year!! 'Chemo brain' set in when I had to do my first sales call on my first day back, that was interesting!! They are a great group of guys. I now have blood tests and appointments with oncologists and social workers, with school holidays in between.

For peace of mind, I have been looked after by a great medical team at st Vincent's public in Melbourne. The multi disciplinary team includes oncologists, surgeons, social worker, psych social oncology and dietician. Also, a breastcare nurse.

Before, I distantly thought that the McGrath Foundation seemed to be doing great things for those women that get breast cancer, but wasnt sure exactly what!! First hand now, I have experienced the benefit of these McGrath Foundation funded Breastcare Nurses. From my diagnosis, to my scheduled scans, appointments and getting my films to different departments I never made one appointment - it was all done for me by Maryanne. She phones me each week to check on the kids, my wellbeing and follows up answers to my questions to any department. Each Tuesday, they all meet and provide feedback to have the full picture of my case.

Some of you have kindly offered assistance where I need it. Trouble is I'm not really sure what I need. I am not very functional around my chemotherapy days up to day 3 or 4 and they are intending on knocking me out a bit to relieve some of my initial side effects. Otherwise, I am working here and there and able to function at home, albeit a bit tired. I know I would want to assist someone in my situation too, so when I need something I'll shout out and there is a good resource on Breast Cancer Network of Australia:

https://www.bcna.org.au/sites/default/files/bcn_helping_a_friend_brochure_web.pdf