Monday 19th of
Feb
Soooo tired
today!
Spent a lot of the
day updating my blog (everything is getting harder now, thinking is getting
really tough. I keep forgetting my train of thought and it's frustrating). I'm
about half way through the 10 week period after radiation (things
"should" start to get better now..... Fingers crossed..... I just
want a little more energy and some quality time with the family and getting
back to a bit of normality).
I know it will
come....... I just need patience and those who know me know I don't have any
patience 😊😊
Today is Tahlia's
first day of netball coaching after school. She is so excited and I'm so happy
that she is getting into a team sport. The gorgeous Kay dropped Tahlia off
after netball with a yummy banana cake...... Yumm!!! (Was demolished in no time....
Thanks Kay). #sogratefulforawesomemummies #blessed
Not long after, my
gorgeous little man Lenny walked in with a massive bouquet of flowers (that
were almost as big as him.... my spunky man). Lenny arrived with the equally
gorgeous Fleur who brought over a with yummy dinner for all of us. Been so
spoilt with gorgeous vegetarian meals from my family (as cooking has become a
challenge). Simple activities like bending to pick something up or things like
cutting veggies take forever to do).
Although as spoilt
as we've all been Harper asked me to cook this week.... She wanted me to make a
vegetarian Bolognese I make (with mushrooms instead of mince)...... She says
she misses mummy's cooking.... Very cute Harper. So I might try it tomorrow,
just for my angel cakes.
I’m struggling a
bit tonight...... Very tired! I know there will be good and tough days, and
this one was a little tougher. I just want to sleep now. Really hoping I start
to come out of the other end soon and start to feel like I have a bit more
energy.
Here's to tomorrow
and a better day 💪🏾🦁👠
#stillkickingitsass
Tuesday 20th Feb
Today I am getting
an MRI on my brain and body. Looking forward to that because it will be
the first measure on the brain cancer since I’ve had radiation, so I should
have an idea if its worked.
Had to fast today
before my scan and had to get up earlier than normally do. I find that when I
wake up earlier than my body is ready to get up, I feel really nauseous so I
end up having a spew…...gross!!! This becoming a regular thing…yukkk!!! I’ve
always been a chuck guts but it’s no fun at all and I don’t like that the girls
see me like that, so I try and hide it from them.
When I went in for
the scan I was concerned because I was sure this wasn’t an MRI. I didn’t have
to remove any jewellery or wear special headphones. I thought no not another CT
scan…..I need an MRI. I’ve had so many scans and tests now, I know all the
machines. But today because I was a bit unstable on my feet I was more
concerned about that than what machine I was going in….but at the back of my
mind I knew it wasn’t an MRI.
After the scan,
Mum, Harper and myself went for a treat
of ice cream and yummy chips from “Lickings” and “Royale Bros”….on Church
Street Brighton……yummy!!
Then it was off home
so that mum could meet Fleur at her new
place to do her condition report. YES you see Mum has also bought a new
place as well and is moving into it in a few weeks!!! So exciting!! Finally the
place she has been building (for almost the last 1.5 years) is finally done and
she will get to move in very soon.
Mum was wrapped
with her place. She will be very happy there. It’s brand new and a perfect new
start for her. #soexcitedformum #abouttime #getstostarttoliveherownlife #ownpad
On another note Harper
hasn’t been feeling her usual happy self, I knew she would benefit from an
afternoon sleep today. We both slept from 1-4:30pm and it was exactly what we
needed. Poor Harper has a terrible cough that is persistent...... She just
needs mummy snuggles today and I loved it. #bestsnugglerintheworld #suchalover
Then for dinner
Aunty Raxy came over with tuna cutlets and salad..... Yummm!!! Delicious….thanks
Raxy, went down a treat!!! #hotandcancook #loveyou
Also received a
surprise delivery of some stunning sunflowers and a pack of daisy seeds for the
kids to plant from the gorgeous Mel Lee and Ames Ross……Loving them…they are so
bright and make me smile. #blessedtohavemetyou #loveoureveshammummies
Wednesday 21st
Feb
Another early start
today! Today I have a blood test before my Zometa treatment tomorrow and Harper
has a Minihaha photoshoot in Glen Iris!
Harper loves her photoshoots
(especially with Minihaha), she has been doing them since before she was 1
years old and just loves Jo (owner of Minihaha, Bebe, Fox & Finch, Tahlia,
Sophia) so much. She was a good girl as per usual and looked so cute in her
special occasion items coming out later this year!
The gorgeous Jules
(photographer) has offered to do a gorgeous family photoshoot for us. We have
been blessed by knowing the most amazing people who just want to help and do
things for us. We will definitely take you up on that offer when things calm
down a but…thanks Jules…you’re awesome!
Then it was time
for Mummy to go home and have a sleep, and I felt much better for it.
Then that afternoon
I decided that I would make a start on dinner for tomorrow night. So I sat down
and cut all the veggies for my vegetarian Bolognese (that Harper wanted me to
make), it took a long time. A job that would normally take a few minutes, took
well over 1 hour to do. But it was satisfying to get cook a meal for my dolly
girl (tomorrows meal….I hope they enjoy it).
The skills that
have been affected this week have been cognition and motor skills. I find my
handwriting is terrible and it takes me a long time to work out what I am going
to say and then to actually write it neatly. Kane thinks it’s not that bad….but
you should see his writing 😊 …jokes babe…love you!
The other thing is that I'm not getting back to everybody, everyday. The reason for that is that I wouldn't never get off my phone. I'm lucky and have lots of beautiful friends who are concerned about me. I seriously just forget. And I prefer not to talk on a mobile phone as it hurts my ears (prefer speaker phones). So please know I love you all. I know you are concerned and trying to reach out and I love you too.
Not long later we
got some special visitors. Katie and Luna came over….I haven’t seen them in
such a long time. Luna is crawling……WHAT?????? She has a tooth and is super
interactive….grown so much in the last couple of weeks. It was so nice to see
them both and it was interesting to me to see Luna trying to work out what’s
going on with my hair…..I think she thinks I’m her Daddy (clearly better
looking of course). So nice to have Luna snuggles and love, I was getting lots
of special dolly kisses.
Sean is in America
at the moment kicking his own goals. Things are just starting for him
#watchthisspace #excitedforyoubro #rememberImyouronlysister 😊
That night we had
yummy Ann Lanigan vegetable soup for dinner….thanks Ann for your yummy soup
make with love.
Got a message from
Kane stating that Gary has to change our appointment to Friday at 8:30am
instead of tomorrow morning. Oh I could have just made dinner tomorrow instead…DOH!
Oh well at least
I’ll get a sleep-in tomorrow and don’t have to wake up early for another
appointment…..bonus 😊
Thursday 22nd
Feb
I had the best
nights sleep. Was exactly what I needed and got up when I wanted to, not when
my alarm went off.
Today my mum was
able to have to whole day to herself. She was able to drop Harper at kinder at
8:30am and then have the whole day to pack for her own move in a few weeks.
My gorgeous friend
Gill brought Harper home after kinder and we had a catch up in our “new” pad!
Was lovely to catch
up (feels like we’ve been gone from Plummer Rd for ages and it’s only been a
few days…and I’m sure it won’t be long till we’re back). Although in the mean
time this house is a serious upgrade. This rental has 2 bathrooms (1 more than our
old home) and a renovated kitchen and the kids have a little cubby and a spare/playroom
too! It is also in the most convenient spot for school and kinder #couldnthavefoundabetterplace
#happywhereweare #therental
Harper was so
pleased with Gill picking her up from kinder, it was such a novelty for her and
she just loves Gill. Special thanks to Super Ange for staying back a bit longer
at kinder while Harper got picked up #loveeveshamrdkinder
That night we had
Mummy’s Bolognese for dinner and I have to say it was a disappointment…think it
is a mixture of my crappy taste buds and different ingredients to what I
normally buy. Or is could be that we have just been super spoilt by all the
yummy food we’ve been receiving from our gorgeous friends and family….I think
it’s that 😊
Decided I was going
to jazz it up tomorrow night to make it yummier.
Friday 23rd Feb
HOORAY WE FINALLY
SEE GARY AND FIND OUT NEXT STEPS AND WHAT’S GOING ON IN MY BRAIN!!!
Super early start
today, our appointment is at 8:30am, well before my wake- up time….my body is
not ready for me to be awake. I woke up nauseous and ended up vomiting in the
car on the way to see Gary.
*** fun story I
felt sick and alerted Kane whilst he was driving. I found a plastic bag in the
car (HOORAY!!) managed to vomit in the bag until I realised there were holes in
the bag and it was coming out on to my jacket…..CHARMING!!!! The joys!!! Poor
Kano…..Thanks for cleaning me up babe.***
We get to the
appointment and we’re ready with lots of questions and queries.
Firstly, was it an
MRI I had? No it was a CT scan I was disappointed as I thought this was going
to be the first measure of my brain since radiation. But this was my mistake as
he did say that we wouldn’t know radiation results for a few weeks (too early
to test with MRI now).
OK the CT scan is
not a good measure for brain activity but what it did show is a significant
growth in the lung cancer. I feel that this was to be expected given we were
not treating the lung cancer when we went on the Alectinib, as Gary was more
concerned with fighting the brain mets.
He said that our
options going forward are immunotherapy and chemotherapy together. He said that
I would have 4 extensive cycles of chemo (every 3 weeks) and immunotherapy
every 2 weeks for the rest of my life.
Kane I and I spoke
about the effectiveness of this as a treatment and he said it is really
effective and will give me a good chance.
We spoke about
being tested again (with new biopsy) for T790M (Targrisso meds) and if that is
a better option. He said he didn’t want to wait to get the results for that
test as it takes a long time (4-6 weeks), he said we needed to act now given
the tumour has grown so much.
I’m just
disappointed that I asked for the fresh biopsy in January this year (knowing
the test results take so long and he didn’t want to do it then due to perceived
risk from the biopsy but now he doesn’t seem concerned about the risk and I’m
having the biopsy on Tuesday this week.
So, my feeling is
we should have done this test last month and know without a doubt, if I am
positive for the T790M mutation or not and then this week we would just be
starting on the correct meds.
My concern is I
don’t want to have chemo if I don’t need it.
So, like with every
appointment you have you walk away and you think, and you start to come up
questions and queries.
We’ve gone back to
Gary and have asked these questions.
- We want to know if there is a way of
fast tracking the results for the T790M?
-
What is the next line treatment should immunotherapy and chemo fail
-
Are there other options?
-
Clinical trials we can get on?
-
How good are my chances?
-
How am I going to feel on immunotherapy and chemo?
-
What are the side effects?
-
Can we hold off chemo until we know results of T790M?
We sent this email
off to him, and to Prof Ben Solomon (who I am going to see as my second
opinion, this Thursday morning from Peter Mac).
Other things that
have changed is now I no longer need to take Alectinib and I need to take Folic
acid for my new treatment.
I will follow up
with Gary on Monday to see if there is any way we can fast track the testing to
know for certain? Although I feel he is going to say no.
From our
appointment with Gary I had my Zometa treatment in oncology. I haven’t had one
since last year because I was having radiation. The nurses were shocked to see
me because I look so different. The last time they saw me I had long hair and
now I’m bald.
Upon talking to
them and helping them understand what was going to happen they suggested I get
a port inserted (because I have very narrow veins and having immunotherapy
every 2 weeks and chemo every 3, as well as blood tests, scans, contrasts are
going to make my veins even more difficult to deal with because of scar tissue.
One of the lovely oncology
patients from Cabrini is an advocate for the port and showed me hers and she said
it was the best thing she did. The nurses feel it really is the best option for
me and will prevent a lot of grief in the future.
So next week is
looking like:
- Monday 26th following up
to see if we can get an early test result on T790M?
-
Tuesday 27th Feb lung biopsy Cabrini Malvern
-
Wednesday 28th Feb port inserted in chest Cabrini Malvern
-
Thursday 1st March second opinion meeting with Prof Ben
Solomon Peter Mac
- Thursday 1st March meeting
with Gary and starting chemotherapy.
After speaking with
the patient about her port, all I could wonder was how low in the chest can they
go with inserting the port?
The reason for
wondering this pathetic really…..it’s because I bought a dress for Kylie’s
wedding on the 17th of March
(and I love it and I don’t want to see the port!) Seriously such a vain
reaction, but wouldn’t it be good if you couldn’t see the port much? I’m going
to ask how low can they go and get ready for the #youresovainremarks 😊
I’m really just
hoping that I feel well enough after the chemo this week and immunotherapy in
the next few weeks that I can be there and party with my little cousin on the
happiest day of her life #IlldoeverythingIcantobethere #wouldntmissitfortheworld
On the way home I
picked up some more grocery items to jazz up the dinner a bit….and I have to
say, after my second attempt it made it much better 😊
Before we went home
we went past HASS our framer on Bay road with the Skylighths we had removed
from our house last week. As soon as he saw the job we had for him he said he
wished we kept going. I guess he’s not looking forward to a pain in the ass job
that this is going to be. But he is the best and I trust him and I can’t wait
to see the job completed and hung in our new home! How nice will it be to have
the original skylights (1940’s) from the existing house in our new contemporary
home? #cantwaittoseethem. #hesalegend
Also this weekend
is a good weekend for mum pack and get organised before she needs to move.
Chad popped around
with some gorgeous flowers, love them…my house looks like a florist now. He’s
just concerned and wanted to pop in….so sweet. #suchasweetheartcousin
Also the gorgeous
Mel Ward did a sneaky drive by bearing chocolate and wine……thanks honey was not
necessary…but definitely yummy 😊
Tonight was a
particularly tough night. My mind is just not working for me today. Over the
last 2 weeks that main symptoms that have been bothering me, have been fatigue,
nausea and especially losing train of thought. This has become particularly
difficult as I will totally forget what I am going to say if someone interrupts
me. I can forget completely till the next day or sometimes it comes back within
mins or hours.
It is very tough on
the kids because they are kids and they don’t completely understand it.
I hate being snappy
with them…..I love them and I miss (quality) time with them. So Kane and I are
going to try and schedule fun family time with them when we can. We’ll try to
go out for early dinner with them on Sunday with a special treat.
I want to try and
keep things as normal as we can for the girls. That’s why this chemo is not
ideal as I’m not sure how its going to make me feel. #couldbethefreakwithnosideeffects
😊
Saturday 24th Feb
YAY Corella’s first
game of Netball for the season!!!!
Tahlia has never
played netball before, so she is nervous. WOW early start….we need to be there
at 8:40am!!!
Tahlia and all the girls looked so
cute and are pumped.
We get to use the new
courts and it looks awesome….they are so lucky to start at the new courts. The
girls all look so gorgeous. They are nervous, as many haven’t played before but
they are excited too.
They did so well
for their first attempt and by the end of the game were really finding their
groove. I think she’s really going to enjoy it and love being a part of the
team!
Well the day proved
a bit too much for me, because a few minutes into the car ride home I started to get nauseous again and this time
came prepared with a plastic bag. But this one had holes in it too…..bummer and
there was no saving it. So I had to throw the spew out of the window…thank
goodness Tahlia’s window was up. It was seriously gross but provided the girls
with a good giggle….what is happening to their mummy???
I think Mummy needs
a good sleep….which I did till about 2:30pm.
Later Kayla,
Larraine (Mum) and Aldrin and Raquel came over for a visit. Kayla the honey
bought us a gorgeous Indian dinner and lots of naughty doughnuts. Was so nice
to catch up with everyone. Has been a long time with everything that is going
on. Kayla the girls adore you and would love a day with you….we’ll work it out
soon. Thanks honey #suchasweetheart
Sunday 25th Feb
Uncle Wayne came
over with breakky for everyone this morning (thanks Uncle Wayne) and to teach
Tahlia her song for Kylie’s wedding. Tahlia wants to do a good job for Kylie so
wants to be super prepared for it when she sings it in a few weeks. Wayne worked out a good version for her and
they recorded it and now she needs to practice before the big day. He’s going
to work with her over the next few weeks, so she feels good about it.
She is a good
little singer (definitely got her skills from my bros and not from me), but
this is going to be challenging, as she needs to sing it without a microphone,
in a cathedral with Wayne playing live guitar, in front of potentially 300
people! #goodlucktahls #youregoingtosmashit
After an afternoon
snooze by me, we took take the girls out for an early dinner to Tommy Ruff’s in
Mordialloc, so that we could have some fun time with them before the craziness
of the next week. Hoping chemo doesn’t knock me around too much, so I still get
to have energy to enjoy the fun times with the girls. After Tommy Ruff’s we
went to YOMG (YO MYGOODNESS) for some yummy frozen yoghurt. Was so nice to do
something fun with the girls, they’ve been so good adjusting to all the
changes.
Despite all this
stuff happening during the week we’re also in the process of building…..so our
house is going to be demolished starting tomorrow for 3 days, WOW!!!!. I have
mixed emotions about it. It will be sad to see it get knocked down, but
exciting because we’re starting our new project.
I’m sad because a
lot of the gorgeous features of the house are going with it (the gorgeous plaster
mouldings in the ceiling, the original windows, a Denon AMP, an electric gate, terracotta
roof tiles, light fittings etc etc) we just couldn’t sell it all in time. I
really want to see the house get demolished but we don’t know if we will be
there to see the house knocked down because of all our appointments this week.
I know it will freak the girls out to see it.
I’m excited to see
how fast it all goes up. Exciting times ahead can’t wait for our new home. We
are building with Thomas Archer, and to date they have been amazing to deal
with. They are taking a vested interest in this project and I feel they are eliminating
many issues for us. I would recommend them highly to anyone. #cantwaittoseehowitallcomestogether.
#fullonweekahead
#lotsofchanges #upforthechallenge #kickingitsass #cancercangetstuffed
#Ihavetoomuchtodo #notimeforthisrubbish #bringonremission
#BIGWEEKAHEAD #LETSDOTHIS
#LETSBETHEEXCEPTIONNOTTHENROM
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