MASSIVE POST......BIG WEEK OF OPERATIONS, NEW TREATMENTS, SECOND OPINIONS...TAKING IT DAY BY DAY

Monday 26th of February

After another busy week I had the house to myself so that my mum could pack for her move in a few weeks. So, I made the most of the situation and slept most of the day. I woke up at about 2:30pm.... I clearly needed it!!!! 

Mum had Harper at her place and they got stuff done!! 

Gorgeous Gill brought Kiara home after school and we had a bit of a catch up. Then after netball training finished beautiful Kay brought Tahlia home with a fresh batch of her world famous brownies..... Still warm and delicious!!!

Also after we finally have the Internet in our rental...... NBN guys came and sorted it out today! 
Also heard from Gary today and I feel better that he feels Targrisso is not a better option than chemo and immunotherapy for me at this stage, however, it's still an option for us we can use it if required. 
We learned there are many different types of chemotherapy. People receive different chemotherapy based on their situation and everyone is an individual and how they respond to it is different too. 

I just want this process started now!!!  #impatient

Still not getting back to everyone as I have my phone off during the day so I can sleep. #soblessedtohavesomanypeoplewhocare

Tonight we had a yummy dinner by made Aunty Maureen....thanks Aunty, everyone it!!! My little meat eaters Kano and Harper smashed it, I even tasted a small piece of roast pork it was yummy!!

Also my darling doll Kiara loves giving mummy foot massages so gave me one tonight.....#toocute

Also today Uncle Rex posted on Facebook that Janet and Steph did a cake reveal to find out the gender of their baby........THEY'RE HAVING A BOY!!!! HOORAY a friend for Lenny and Spencer!!! Makes me so happy....another little bubba to love...due in August!

Tuesday 27th of Feb

I have noticed that my "brain fog" is getting worse so I need to write a list of things for me, my mum and Kane to do so that I know it's all happening....otherwise I'll forget.

My list is something like:

Wake up 7:50am
Have a banana
Take meds
When I wake up before I need to, I always vomit. I wake up sooooo nauseous, so I just need to sleep. I'm just worried I'm not keeping my meds down, so I need to do the gross job of checking my vomit to ensure that I keep it down.
Go back to bed, wake up at 10:45am
Take all necessary paperwork
Leave at 11:15am

Off to Cabrini Malvern for my first operation which is to get the lung biopsy under guided CT scan. The procedure sounded a lot scarier than it was. 

You're awake for the process. They show you where they need to go in. 

And surprise surprise of course it's a bit difficult for me...... Not really at the front, not really through the back and guided through my ribs in a strange angle. Luckily for me I had Dr Jacqueline Price who is a legend at her job and seriously confident in her ability...... I really like her 😊😊

They clean the area, sedate it slightly on the surface and then inject you with an anaesthetic that should be the "most" painful/stingy part. But I didn't really feel anything (I guess I was trying to work out what I was feeling..... But it really wasn't too bad..... Dental injections hurt more I reckon 💉 

Then they go into the lung about 4cms with scissors/ scalpel type object and cut out 2  x 2.8 cm biopsies from my lung (look like worms). The Dr was wrapt and called out "bullseye"🎯 I knew I liked her😂 She was really happy with her work. It was neat and it was relatively pain free. She was instructed to try and get 3 biopsies but was worried because of a pneumothorax. That is where they puncture your lung and air gets in. This is not ideal as the positing had difficult breathing. Dr Price felt asking fur 3 would definitely result in a pneumothorax and wanted to avoid the risk. She said she'll get as much as she can without causing danger and SHE DID!!!

Had to stay in recovery for a few hours to ensure my lungs were stable and I wasn't feeling any pain...... All good. All I'm feeling is fatigue and nausea. 

Got home not long after 6pm and Raxy was over with yummy seafood marinara and salad....... The girls, Kano and Mum loved it. Unfortunately I'm off food at the moment (which is a pleasant change from eating like a ravenous 🐷) and couldn't eat it unfortunately. But it looked delicious, thank you Raxy. 

I went to sleep around 7pm and slept through to the next morning, great nights sleep. 
Tomorrow we are confused what to do should we wait to get the chemo port put in my chest and go through another operation?? Or should we wait a few weeks till we get the biopsy results and then have the operation if I need it? Confused about what to do. Guess I'll see if I'm up for another early start and operation tomorrow. 

Wednesday 28th of Feb (last day of summer) 

Another early start this time, we got up just before 7am and Kano got the kids ready for school and I slowly got ready for round 2 of operations this week.  As per usual because I'm awake so early I was nauseous again..... This time I have the proper vomit bags from the hospital..... Hopefully no problem with leakage! I was awake early so thought I would go to get the operation and I was feeling fine from yesterday's procedure, so we decided to go ahead. 

Today was going to be a fun day I was going to catch up with my mothers group who were coming over at 10am ..... But now there has been a change of plans as today I'm getting my chemo port put in. So no catch up with mothers group. Plans change daily/hourly around here. I guess that's what we need to do and just play one day at a time. (Tough for a planner/organiser like me) I guess during this period in my life, I might be teaching myself to let go and maybe not be so organised......... Nah who am I kidding???? That will never happen 😂😂😂

We also received a voucher to the Melbourne Tram dinner (last chance to use it), which we thought might be a possibility after the second operation. I now think it's unlikely given I have the operation in the afternoon and there is a 2-4 hr recovery period and I'm on a lot of meds and don't have an appetite. So I think that's wishful thinking. Hopefully they will still honour the voucher and we can go later in the year!! 

Anyway it was de ja vu. Back at Cabrini Malvern and this time it's time to get my port inserted. Kane and I heard from Gary and felt we get the port regardless. Because the earliest we could get all the results for lung biopsy will be in about 7-10 working days...... It is being put through as URGENT.... We will keep chasing it up. So there is no delay. But we were assured to start immunotherapy and chemotherapy regardless, then if I don't need the port we use Targrisso or some other drug.

We felt comfortable with that decision and I felt strong enough for another procedure.

This time the process sounds even more daunting but I'm sure it's not because so many people have them and it saves their veins from getting completely scarred and messed up (I've already got dodgy veins..... So this should be great for me). Sometimes they spend over 1hr trying to get a vein before they can even start my procedures....this will be much better for me. 

Today's operation seemed more like an operation..... Lots of doctors, lights, shiny metal tools. I was protected from really seeing anything (with a tent like sheet they use when you have a caesarean). 

Again you're awake for this procedure. They clean the site and give you a local anaesthetic on the site of where the wound will be. Then they give you a drug that's supposed to give you the sensation of having a few glasses of wine (unfortunately for me I didn't get that feeling)...bummer! But because of that I felt everything!!  I think the port got stuck...... All I know it didn't go in cleanly so they were there for ages and it was painful, with all the adjustment and poking and prodding, they finally got it in to the right position but left the needle in for my first round of immunotherapy and chemotherapy tomorrow afternoon. It was oozing a bit so they wanted to monitor it for a while. 

Then it was back to recovery where I had to wait for a few hours and then was free to go after I had something to eat. We only got out of there at 6:15pm.....long day!

I'm groggy on my feet so I was escorted in a wheelchair to the car. Thank goodness for that because I was dreading that walk through the hospital. All the nurses are amazing...... Definitely #angelsindisguise 

#blessedwithamazingnursese

We finally get home and it's nearly 7pm. And dinner tonight is by the gorgeous Ann Lanigan and famous chunky vegetable soup and pasta. Unfortunately I can't eat...... Will be sick for sure. Trying to get by on plain crackers and water, seems to be working so far. 

Kids were emotional to see me tonight because of the needle in my chest and plasters but it really isn't too bad at all..... I think they just miss me. I know I miss them.

Thursday 1st March
Didn't sleep well at all last night......tough to sleep with operations on both sides of your body and the needle still inserted in my chest (tough to get comfy). Had a really early start, had to leave home before 8am, so meant I was super nauseas and vomited as per usual. But we've been looking forward to this day so we had to go!

BIG DAY TODAY!!!! 

Today we are seeing Prof Ben Solomon at Peter Mac for second opinion. He has been highly regarded to us. 
We had a series of questions for him. But before that he just wanted us to take him through the whole story!!! He has most of the reports but wanted to understand the story from me. 
He is a calm, quite man who listens, thinks then comes back with his opinion based on fact. We like him. 

We asked him: 

1. Should I have been put on Alectinib in January or was that the wrong med.... Given I've never tested positive for ALK mutation so why am I treated with a drug that treats ALK cancer mutation??? He said he didn't understand Gary's logic around that. 
2. We asked should he have tested on fresh biopsy before I started radiation? He also agreed that he should have done that as we wouldn't be waiting now to see if I'm positive  for T790M? 
3. How quick can we get results in before we need to do chemo? He agrees that the biopsy results will come back in about 7-10 working days and then we will know how to proceed (maybe Targrisso is still not an option and immunotherapy and chemotherapy are the best options for me). 
4. We asked so should I go in for immunotherapy and chemotherapy this afternoon to which he replied " It's up to you".
He didn't think it would hurt to wait till results are in but Kane and I feel given I've got the port inserted already and my appointment is this afternoon, we don't want sit around and not do anything. We also feel that Ben hasn't seen the latest scan and report, so there may be a real reason for moving faster than waiting 7-10 working days. Ben agreed and reminded us that there are MANY treatment options and we can always come back to that.  

He said he feels Gary has our best interests at heart (which we don't doubt) we just need better communication skills.
At the end of the meeting we walked out believing Ben and Gary's approach may be different but we felt confident that Gary does have our best interest at heart.
Ben also said he would write a letter to Gary to ask some questions and discuss our concerns. We also have a follow up appointment with him in a few weeks, when we receive the results of the biopsy. 

After the appointment we had time so did a drive by our place....... Still not demolished! Gorgeous Gill is keeping us updated with progress reports too. Apparently they'll start tomorrow with it all done by Tuesday next week!! Sad but exciting!!!

Now it's time to see Gary for our appointment before my treatments. I felt like I went behind his back (felt like I was cheating on my Dr) so I told him where we came from and asked Prof Ben Solomon for a second opinion based on our unconventional methods. Gary took it well, saying Ben's good.

I discussed what we spoke about with Ben and that we agree to start treatment today. I just wanted to reiterate to him that I just want to know everything is going to be OK. He said "yes I know you want me to tell you you're going to be here in 30yrs and all will be good....but I can't do that....we have to just go through the process." He said there are many options (which made us feel better) because last week we thought we were towards the end of the line. There are new drugs and trials and we just need to go through the process. 

Kane and I have a new strategy where we'll have a "Gary folder" and make sure we walk out of his office with all the answers we want to know..... (Probably should have been doing that from the start 🙂 #smartnotsmart) 

Well now down to oncology day clinic...... You know you're there too often when they kiss and cuddle you when you arrive, other patients know you well and are praying for you and your family ....... Cute!!

I'm telling you some really sick people are getting treated in that room, but somehow it's the warmest, compassionate and positive room. People just want to be there for their families and they fight and they're positive...Amazing people!!!

Treatment was long. We got in at 1:30pm and then after a few bags of meds (given intravenously) I was walking out of there at 6:15pm

They warned me that I'll probably feel pretty average for next few days/week but I'll need to get on top of my nausea/ constipation (too much sharing ?????)

So I have the following meds to help with this:  
- Movicol
- lactulose
- Coloxyl with senna
- Dulcalax tablets
- microlax enemas
- Dulcalax suppositories 
- even fleet (what you use for colonoscopies) 

And for nausea: 

- maxalon
- Zofran (Ondansetron) 
- antacids 

Then if in not keeping food down and loose weight I need to have:

- a protein powder 
- and Metamucil for fibre

So I think I'm sorted! 

Today during the treatment I vomited a bit but then I managed to eat 2 savoy crackers and keep some dry ginger down. It helped a treat. 

When the nurses removed the dressing from the port operation they could see something was different. There a few layers of tape because it was oozing a little and stitches looked different. Still fine, they just had trouble getting it in (everyone's different)! My brother Wayne said the wear that scar like a badge of honour🏅.....Great idea Wayne I will just like I've embraced the scar on my neck from when they did the lymph node biopsy (mediastinoscopy) in June 2017, or my multitude of stretch marks from my 8 pregnancies and 3 bubbas (5 angel babies/miscarriages... Story for another day)!

Still quite nauseous and really can't eat. Rachael cooked up a storm tonight though. Thanks so much Rach. Sorry I couldn't eat it myself, but the rest of the crew devoured it!! 

Although I managed to get down some steamed corn 🌽and that felt great! Might try some of your yummy soup tomorrow. 

Thank you also to the gorgeous Katherine for scones, jam and cream!!!! Girls are loving all there special treats!!! Thanks honey..... So nice of you. 

Surprisingly I'm not that tired tonight and took ages to fall asleep 💤💤 but when I did I slept like a baby (needle from the port removed made it much more comfortable to sleep) 

Friday 2nd March 

So what does tomorrow hold??? How will I feel? Will I have my head in a bucket the whole time? Will I be fine? 
Well to be honest it wasn't too bad. I was tired, so slept a lot but then was well enough to hang out with the kids for a while and snuggle and watch a movie. Love "Fantastic MR Fox"' great kiddy movie and great for the adults too!!!!!

Tonight is the OLA Sports carnival. Tahlia has YABC (musical theatre) so won't be going to the sport carnival and Kiara just wasn't up for going tonight. She just wanted some mummy snuggles.

Also they have started some work on the demolishing of our house.....

Saturday 3rd March

Can you believe it's March????? Too much to do!!! 
Tomorrow morning Tahlia plays her second game of netball at 8:40pm (early start for me....... Hope I can get there, but one step at a time.

Tahlia is playing GK, GD and then C. Because they're just starting they get a go in every position. It's a really good idea because you can work out their strengths and it's fun having a go in each position. 

After netball, Kayla is coming all the way from Plumpton (FAR AWAY) to pick up kids to spend the day with them, just because we have no idea what this weekend will be like......Thanks for being so thoughtful.... Love you 😘

Then they are going to have a sleepover at Aunty Fleur's and Uncle Wayne's so Tahlia can practice her song 🎤🎼 for Kylie's wedding 👰🏻💍🎂💞and then spend the day with their cousins.💃🏽👯👫

Going into this full on week (hospital Tuesday, Wednesday and Thursday) for procedures was really daunting. Really didn't know what to expect, if we were doing the right thing and also getting a second opinion felt like cheating on Gary 🙊🙉🙈 

Also I've had new symptoms which were a bit worrying too, because this week was the first time since I was diagnosed with cancer that I've started to feel the cancer pain in my spine and pelvis. Gary told me to expect more of that in the next week and not to be alarmed because it will be from the treatments and I should take pain relief as I need it (Endone etc). 

I also went in thinking maybe I'll ask them to put the port is as low a possible so you can't see it under I bought for Kylie's wedding. But thankfully common sense prevailed and vanity took a back seat and I let the surgeons be surgeons 😷

Also I guess at the back of my mind I've been working towards the idea that "usually" you start to feel better after 8- 10weeks of radiation. I'm at week 7 now, so maybe subconsciously I was excoriating to start to feel better, maybe have a bit more energy. But now that hasn't happened and there are new developments, with the operations and immunotherapy and chemotherapy, I'm hoping the treatments don't stuff me around too much!!

So many a parties that I thought I'd be be better for and just generally having more energy so I can go back to living a full life. 

In the next couple of months we have: 

1. Bruno Mars on the 10th of March
2. Immunotherapy treatment and Zometa on the 15th March
3. Kylie's wedding on the 17th of March 
4. Chemotherapy and immunotherapy on the 22nd of March 
5. Luna's first birthday party on the 25th of March
6. Peters 70th on the 29th

Then there is good Friday and Easter 

7. Chemotherapy and immunotherapy on the 12th of April (2days before Kane's 40th ) 
8. Mini trip away to Cape Schanck on the 21st- 22nd April …thanks Jen and Trev
9. Immunotherapy and Zometa on the 26th 
10. Then Harper's 5th birthday on the 30th.

So all these events are up in the air for me. Hope I get to go to most of them. Maybe it will be like how I handled every other treatment and it doesn't knock me around too much. 

#cancercangetstuffed #messingwiththewrongchick #imdetermined #notgoinganywhere #kickitsass #mykiddiesneedme 👠🦁💪🏾

Didn't get to netball this morning unfortunately but Kane went with the girls and he said Tahlia did really well and she is really enjoying it. 
Later that day Kayla arrived to pick up the girls to spend the day with them. They are soooo excited. Then she is dropping them off at Wayne and Fleur's so that they can have a sleepover......they will have a fun weekend. The girls spent the day playing in the park with Kayla and Shivs and had a ball.

That night they had Japanese food for Karen's birthday (Happy Birthday Karen) and then watched fun movies in a giant sleepover mattress. They had a great day....Thanks Kayla, Shivs, Wayne and Fleur for taking them out, didn't know what the day would be like. 

So far I'm feeling OK. Just really tired and nauseous (as per usual, but I didn't vomit today).

Then we had the gorgeous Gill and Xander pop in with some yummy fish curry for us tonight.....hoping I'm able to eat some, although at the moment I'm living off Savoy crackers and dry ginger ale.

Now I'm tired so sleep I guess. #dowhatyourbodytellsyou

Woke up and Daddy and I started watching "Sinner" on Netflix.......looks great!!!! Jessica Biel is a great actress, looking forward to really getting into this.

Sunday 4th of March

Then it was bedtime and I slept really well......went to sleep at about 9pm and woke up at 7:30am!! Then I went back to sleep at 10am and woke up at 3:30pm......was what I needed today. 

I've been doing well. Really uncertain how I was going to feel after chemotherapy and immunotherapy and 2 operations this week. Still just taking each day as it comes and adjusting to what my experience is going to be, because we're all individuals and feel and experience things differently. So far so good for me.

The symptoms I have been experiencing in the last day have been extreme dizziness, nausea and fatigue.

Wayne and Fleur took the kids out to Frankston sandcastles today! They had such a great day.....thanks guys....they would have been super bored with us. We are so lucky to have you in our lives and your support is incredible.......couldn't do this without you....love you more than you'll ever know. 

Later that day a had a quick visit from my gorgeous friend Patty who is fighting her own battles and she looks amazing! Thank you for your thoughtful gift Patty....love you and can't wait to catch up with you properly when we're both stronger!

I have eaten a bit more than usual today......my usual diet over the last couple of days has consisted of Savoy crackers and dry ginger ale. Today Gill you'll be happy to know I was able to have some of your yummy fish curry and I managed to keep it all down.....(eating like a grown up 😊). It was delicious....thank you so much for all your help and support...love you. 

As the night progressed more of the symptoms I have been expected to feel have begun. I'm starting to feel more pain in the cancer areas (lungs, chest, pelvis, spine, head, ears and now a little in my tummy too) it's more bone pain than anything else. It's nearly meds time so I'm going to hold off on pain relief until then. I'm finding nights to be the most difficult with dealing with noise and energy...but lets see that could all change in the next few days.

I feel I have been doing really well and just will play it by ear, day to day.

My mum has been incredible and available for us at an instance notice. The next couple of days/weeks are so up in the air in regards to how I'm going to feel or what symptoms I'm going 
to feel. My mum will be here with me (as well as my massive support crew) to ensure I'll be OK......(what would we do without our mums??? Love you mum....thank you for all your help). 

So here's to another eventful week, of what knows what to expect. 

#upforthechallenge #massiveweek #happytohavestarted #cancercangetstuffed #justaprocessineedtogothrough