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

2 July - The Kids

So, with much coaching by the social worker at St Vincents, armed with handouts and a book written by a little girl whose mother had breast cancer, it took us 2 weeks before telling the kids on Wednesday night 17th June when they finished school.

Jana held her mouth open in shock, Alexander kind of went white and Andres came by my side and held my hand. They took it pretty well. Jana's question were whether I was going to die and if my hair would fall out, would I be sick.....mostly the questions that other kids had asked in the handouts, which was very handy so we had answers for them. The social workers have also offered to work with the kids if they need it and I've told the school and their teachers and hopefully armed them with what they need to say if the conversation comes up.

Andres told me that he loves my hair, "but it will grow back Mum". Jana doesnt want to see me bald and asked if I was scared before my first chemotherapy. They are more resiliant than we think.

The hardest part was telling them that we will have to hold off on our trip to Disneyworld.....we were going to surprise them in July with their tickets, but it will have to wait now.

Andres also told me that I am the best Mummy in the world and I will still be beautiful without hair.

Jana left me a little present and inside was a letter with the heading "no cancer aloud", she told me that she will pray for me to get better and cant wait until I am well again. Very sweet.

All my decisions will be based around the kids and considering them, including my determination to get better.

30 June - On the freight train of Breast Cancer

A Reluctant Passenger - My updates on the 'c' word

I've written this blog for two reasons:

- Firstly to increase awareness for my friends and family, and
- Secondly, to provide an update on where my health is at without the 'c' word being the flavour of every conversation with my dear family and friends.

I did consider carefully whether I wanted everyone to know about the diagnosis. Keeping quiet amongst close friends and family is easier, but my friend shared her breast cancer news with me and encouraged me to investigate my own benign raisin further.

For this I am very grateful and want to 'pay it forward'.

We don't know who or when cancer will tap the next random person on their shoulder. When someone within our circle is effected it heightens our awareness. I hope that news of my diagnosis increases your own awareness.

Most women find a lump, or have soreness, or redness, but I had nothing. The shock of my diagnosis is worse because there was no evidence of any kind, no family history. It was quietly invading the cells in the depth of the 'wrong' breast. Detectable only under ultrasound and when comparing my previous mammogram.

So by writing this, I'm not looking for attention or sympathy, but I hope that you all have a mammogram, so you have a record of your 'girls' - a marker in place and time if you like.

And if you do have something of interest, have an ultrasound to see what's inside those interesting lumps and if you are still not satisfied, have a biopsy showing what it's made of.

I've read so many accounts of dismissed and accidental finds and getting it 'early' is key to survival. I only wonder if I had gone back at 2 years since last mammogram instead of 2.5 years, would my treatment plan be a little lighter on????

So visit www.breastscreen.org.au and book your mammogram on-line.