Hi everyone - Marc here. It's now my turn to update our blog! Our plans changed significantly last week as we were initially planning to fly to Sydney on Thursday for Lou's next Iribulen treatment, however we decided to head to Melbourne on Tuesday instead as Lou's breathing was not improving and we did not want to wait any longer! I spoke to Fran on Monday morning and explained the situation. Fran was her usual amazing self and arranged for us to transfer to a Melbourne Oncologist based at Maroondah Hospital.
Monday was an extremely busy day as we had to arrange everything from flight clearances via Dr Moller to organising portable oxygen concentrators and a very stylish wheelchair for our trip. Our little fur kid was dropped off to her second home (Pets In The City) for an extended holiday, and eventually we had everything set for our departure at 08:00 Tuesday morning. As usual my darling Lou took everything in her stride and we had a lovely evening at home together in Auckland on Monday evening.
Tuesday was a very stressful day. I was worried about how Lou would cope with a 4 hour flight. I have to say that the Air New Zealand flight crew were fantastic and did everything possible to make Lou comfortable during the flight. They fell in love with her (as everybody does) and wanted to spoil her with some extra treats and special attention - it was lovely. We were so relieved to touch down in Melbourne we high fived each other to celebrate making it across the Tasman without any complications.
Once in Melbourne we headed straight to Maroondah Hospital Emergency Department to get Lou "into the system". We were told to ask for the Oncology Registrar upon arrival. As I was wheeling Lou into Emergency she suddenly (and urgently) needed to find a bathroom (she had quite a few cups of tea during the flight)! I headed to the Disability toilet only to find it occupied. So I had two choices - wheel Lou into the Ladies toilet (no way), or into the Men's! Fortunately the Men's was empty so off we went! Lou was literally in fits of laughter which obviously made me laugh uncontrollably - I'm really not sure what the Admissions Nurse thought!
We spent quite a few hours waiting in Emergency before speaking to the Registrar and discussing the proposed way forward. The Registrar advised that Lou would need to be admitted to Hospital to ensure that Chemo was not delayed. We were both upset as we were looking forward to getting home to see everyone, and Lou was so looking forward to her Mum's home cooking (Lou's fave is Lamb Chops, Mash, Peas, and Mint Sauce).
The registrar also told us that the Melbourne Oncologist (Jacquie Chirgwin) would not be able to see us until Thursday morning as she was at a conference with Fran. It was a lot of information for us to take in - new hospital, new people, new procedures, and to add to that we were both very tired after travelling (I was feeling exhausted, I can only imagine how Lou was feeling). We perservered knowing that it would work out and Lou would receive the necessary treatment required.
I think I should say at this point (and to make things easier to understand in the blog update) that Lou's Mum is referred to as Mum, and my Mum is referred to as Mumsie! Now that is cleared up - Mum came and spent the evening with us at Maroondah Hospital and brought along a lovely hamper of our favourite goodies to snack on. It was so lovely to see her and a great relief to be with Family.
The next few days were spent at Maroondah consulting with various medical staff, and making sure Lou was comfortable. We met with Jacquie Chirgwin on Thursday morning and she was absolutely lovely. Jacquie had been in discussion with Fran and they both recommended that Lou cease with the Iribulen trial as it was not working quickly enough to improve Lou's breathing. Jacquie recommended Lou start Abraxane Chemo treatment and was able to schedule Lou's first dose on Thursday afternoon which was excellent. Lou was dischardged from Hospital Thursday evening (she would not stay a moment longer) and we were all very relieved to have her back home at Mum's.
We are scheduled to see a Peninsula Radiologist & Oncologist early next week and it looks like Lou will be able to have her next treatment at one of the Private Hospitals on the Peninsula which is great and means minimal travel to appointments. Mum & Stuart have been fantastic in every way and have made us very comfortable and relaxed. Mum has been giving us lots of hugs and kisses and cooking all of Lou's favourite meals. For those that do not know Lou's mum is a Registered Nurse which has meant it is much easier to look after Lou at home given her additional medications and treatment requirements.
Unfortunately Mumsie has not been able to visit Lou due to an infection - and she cannot wait to get over her bug and come and give us both lots of big hugs and kisses. Keep up the phone calls and messages coming Mumsie and we look forward to seeing you and the rest of the crew very soon xxx. All of our family have been so wonderful and we feel truly blessed to have them and all of our dear friends supporting us and sending messages of love and support during this difficult time.
Lou is currently sitting next to me on the couch and occasionally looking over between cat naps to make sure I finish this post and include everything on her list :)
With much Love
Lou & Marc xxxx
Saturday, November 13, 2010
Friday, November 5, 2010
Getting things under control....
Over the last week, my health has deteriorated quite dramatically, especially in relation to my breathing. I am getting out of breath walking up a couple of stairs, and have to walk quite slowly to keep my breathing under control.
As a result, Marc and I spent 3 hours at the Auckland Hospital yesterday to see how we can get the situation under control until we fly to Sydney next Thursday. After blood tests, and x-rays, they have decided to increase my steroids AGAIN........(seriously someone is messing with me!), and they will start me on a "take home" oxygen pack to help me until the "clever little sea sponge" kicks in. The chemo is obviously only just starting to kill some of my cells from the infusion a couple of weeks ago, as my eyebrows and eyelashes have only just started falling out over the last couple of days.....and apparently this new treatment can take a couple of cycles to fully kick in. The steroids will be help reduce the inflammation on my lungs (and increase the inflammation on my face - seriously.....what is all of that about)??? - and the oxygen will help me breathe normally again.
The funniest thing happened yesterday - as we got in the car to go to the hospital - I asked Marc to bring my shoes for me. Well, we were nearly at the hospital and I asked Marc where my shoes were - and his face just sunk! We were in hysterics at the thought of me walking (at a snails pace) into the hospital with NO shoes on.....what a look that was! Anyway, we quickly explained the situation to everyone we bumped into - and had a little chuckle with the staff. The only thing that was missing was my "Proud to be a Westie" T-Shirt!
This weekend will be a quiet one, depending on how I am feeling. Obviously food will play quite a large part in our plan due to the steroids.....so perhaps Indian for dinner tonight, and eggs on toast for breakfast in the morning....mmm!! Marc is an absolutely amazing cook - so I have already put in a request for my top 5 favourite recipes x
Millie is doing really well. We have actually had her for one year tomorrow, and what a fantastic year that has been. She is such an affectionate little thing, and is just ALWAYS happy - she is perfect!
Marc is doing well. He is exhausted after his 2 hour "oxygen" training session....and is now feeling pretty confident with his new machinery!
The last week has been a little stressful and unplanned as you can imagine, however now we have a "plan" and we are getting things under control, we are feeling much better.....and are counting down the days until we get my next infusion of the treatment.
Lou
x
As a result, Marc and I spent 3 hours at the Auckland Hospital yesterday to see how we can get the situation under control until we fly to Sydney next Thursday. After blood tests, and x-rays, they have decided to increase my steroids AGAIN........(seriously someone is messing with me!), and they will start me on a "take home" oxygen pack to help me until the "clever little sea sponge" kicks in. The chemo is obviously only just starting to kill some of my cells from the infusion a couple of weeks ago, as my eyebrows and eyelashes have only just started falling out over the last couple of days.....and apparently this new treatment can take a couple of cycles to fully kick in. The steroids will be help reduce the inflammation on my lungs (and increase the inflammation on my face - seriously.....what is all of that about)??? - and the oxygen will help me breathe normally again.
The funniest thing happened yesterday - as we got in the car to go to the hospital - I asked Marc to bring my shoes for me. Well, we were nearly at the hospital and I asked Marc where my shoes were - and his face just sunk! We were in hysterics at the thought of me walking (at a snails pace) into the hospital with NO shoes on.....what a look that was! Anyway, we quickly explained the situation to everyone we bumped into - and had a little chuckle with the staff. The only thing that was missing was my "Proud to be a Westie" T-Shirt!
This weekend will be a quiet one, depending on how I am feeling. Obviously food will play quite a large part in our plan due to the steroids.....so perhaps Indian for dinner tonight, and eggs on toast for breakfast in the morning....mmm!! Marc is an absolutely amazing cook - so I have already put in a request for my top 5 favourite recipes x
Millie is doing really well. We have actually had her for one year tomorrow, and what a fantastic year that has been. She is such an affectionate little thing, and is just ALWAYS happy - she is perfect!
Marc is doing well. He is exhausted after his 2 hour "oxygen" training session....and is now feeling pretty confident with his new machinery!
The last week has been a little stressful and unplanned as you can imagine, however now we have a "plan" and we are getting things under control, we are feeling much better.....and are counting down the days until we get my next infusion of the treatment.
Lou
x
Sunday, October 31, 2010
And here are the photo's...
I arrived home safely from Sydney, and it was SO great to be at home with Marc and Millie!! We have had a quiet weekend at home while I get over the recent treatment, which has been wonderful just to be at home and relax.
Here are some photo's from Gina's visit to Auckland - and from my time in Sydney.
The night that Gina arrived - cause for a celebration!
Marc and the our bestie - Gina! x
Gina and I
She just could not resist a turn of my 'Hannibal Lecter' radiation mask!
Here we go - me, with my "clever little sea sponge"
The excitement was nearly too much for Marc!
Me, with my AMAZING nurse (who also gave me chemo in 2007) - Paula x
My gorgeous friends, Jackie and Naomi who live a few hours out of Sydney - unfortunately we had just finished Jackie's first round of chemo again - after we met in 2007 having our original treatment.
The beautiful Shelley and I
And of course - here she is - Grrrraaaannnndddd Maaaammmmaaan (and baby Fraser)!
Francoise, Fraser and I x
This was a great night too - with Mindi, Tim (and Flynn)!
Lou x
Friday, October 29, 2010
Coming home......
I am currently sitting in the Sydney Qantas Club (.....mmmm....yes, I admit I played the C card and wore a hat not a wig.....thus gaining access to the Club AND access to priority customs (it's got to be good for something hey?)), waiting for my flight home to Marc and Millie - I cannot wait!
The last week or so in Sydney has been wonderful, and Tim has been a wonderful host and looked after me every step of the way - Marc and I could not be more grateful.
I have lots of photos to post, which I will do over the weekend, as I was lucky enough to be able to catch up with a lot of my friends in Sydney during the trip (Tim's parents, Jackie, Naomi, Mindi, Shelley, Francoise, Graaaaand Maaammmaan, Heidi, Fraser, Clover, The Farm Dogs, and all of the Signature Team) which was wonderful (thanks Niri for arranging the delicious Yum Cha lunch)! x
I had my "clever little sea sponge" treatment yesterday, and now I will have a break for a week and a half before my next treatment the week after next. All of my blood tests came back with good results, so we did not need to reduce the dosage as some women are forced to do which was fantastic. Got to spend some time with Fran which as always is amazing. I always feel absolutely on top of the world after any dealings with Fran - she is one of the most incredible people in the world. The only bad news was (and can you believe this???) they have had to double my steroids - which as you all know are my FAVOURITE part of this situation!!! This is just to keep my swollen eye under control, until we can schedule some radiation to disintegrate the little critter that is on the bridge of my nose! So, in the mean time I am (trying to) "suck it up" looking like the Michelin Man - I think that people think that I am part of some kind of Halloween exhibition or something peculiar... lol!
I will post all of the photos on the weekend.
Lou
x
The last week or so in Sydney has been wonderful, and Tim has been a wonderful host and looked after me every step of the way - Marc and I could not be more grateful.
I have lots of photos to post, which I will do over the weekend, as I was lucky enough to be able to catch up with a lot of my friends in Sydney during the trip (Tim's parents, Jackie, Naomi, Mindi, Shelley, Francoise, Graaaaand Maaammmaan, Heidi, Fraser, Clover, The Farm Dogs, and all of the Signature Team) which was wonderful (thanks Niri for arranging the delicious Yum Cha lunch)! x
I had my "clever little sea sponge" treatment yesterday, and now I will have a break for a week and a half before my next treatment the week after next. All of my blood tests came back with good results, so we did not need to reduce the dosage as some women are forced to do which was fantastic. Got to spend some time with Fran which as always is amazing. I always feel absolutely on top of the world after any dealings with Fran - she is one of the most incredible people in the world. The only bad news was (and can you believe this???) they have had to double my steroids - which as you all know are my FAVOURITE part of this situation!!! This is just to keep my swollen eye under control, until we can schedule some radiation to disintegrate the little critter that is on the bridge of my nose! So, in the mean time I am (trying to) "suck it up" looking like the Michelin Man - I think that people think that I am part of some kind of Halloween exhibition or something peculiar... lol!
I will post all of the photos on the weekend.
Lou
x
Saturday, October 23, 2010
The Dynamic Duo
On Thursday, Marc and I went to have our dose of my "clever little sea sponge" and we were delighted to be welcomed by Paula and Lisa the same chemo nurses who looked after me in 2007. They have moved buildings into this beautiful old convent, which is decorated so perfectly and looks incredible! Paula was fantastic as always, and the entire process only took 20 or 30 mins (I think it would have taken 5 minutes if we weren't talking and laughing so much)!
The side effects have been quite minimal at the moment, I felt a little tired and "off" on Thursday afternoon and yesterday, however am starting to feel better today. It is a gorgeous day here in Sydney, so we are off to enjoy the day with Tim.
Yesterday afternoon we had the pleasure in meeting Fran's husband - Dr Hennessy. Sal - you were so right with your comment - Marc and I have truly been blessed with the people that we have crossed paths with. Even with our run of bad luck - there really is a silver lining!! To have Fran and Dr Hennessy on our side is AMAZING! Dr Hennessy took photo's of my retinal tumours on a machine that is the only one of it's kind in the Southern Hemisphere- and they will take more photo's in 4 weeks to see how they are reacting to the treatment. The technology was incredible - Marc thought that he had walked into the twilight zone!!
Next treatment is scheduled for next Thursday, and all going well, I will fly home on Friday.
Lou
x
The side effects have been quite minimal at the moment, I felt a little tired and "off" on Thursday afternoon and yesterday, however am starting to feel better today. It is a gorgeous day here in Sydney, so we are off to enjoy the day with Tim.
Yesterday afternoon we had the pleasure in meeting Fran's husband - Dr Hennessy. Sal - you were so right with your comment - Marc and I have truly been blessed with the people that we have crossed paths with. Even with our run of bad luck - there really is a silver lining!! To have Fran and Dr Hennessy on our side is AMAZING! Dr Hennessy took photo's of my retinal tumours on a machine that is the only one of it's kind in the Southern Hemisphere- and they will take more photo's in 4 weeks to see how they are reacting to the treatment. The technology was incredible - Marc thought that he had walked into the twilight zone!!
Next treatment is scheduled for next Thursday, and all going well, I will fly home on Friday.
Lou
x
Thursday, October 21, 2010
A sea sponge to the rescue!
Well, we certainly have had a topsy turvey week! We celebrated our great news (or so we thought) over the weekend with the awesome company of Gina - and we had an absolutely amazing weekend filled with LOTS of laughter....and funny stories!! I will post some photo's of our weekend together shortly!
On Monday we met with Dr McCrystal to give him an update on our successful admittance to the AU drug trial. When he saw my eye he was concerned that it was still so swollen, and as a result referred me to an Acute Opthamologist on the Monday evening. Unfortunately our "good news" was dampened with the fact that my tear duct is blocked probably due to more cancer.....and whilst they were checking everything else, I was diagnosed with Retinal Cancer in both of my eyes! That explains why I have been having so many problems with my vision, which previously they have put down to the brain radiation!!
Anyway, Marc and I flew into Sydney yesterday and met with the AMAZING Fran. We felt as though a weight had been lifted off of our shoulders as soon as we saw her!
So, basically the next steps are to prioritise our "issues" which at the moment are my breathing and lung function - so we are off to start the new trial drug (derived from a clever little sea sponge) this afternoon, and wiil have a further treatment next Thursday, and I will fly home on the Friday (29/10). We have faith that this drug will have an effect on ALL of our tumours, and start getting things under control again. For this cycle I am required to be based in Sydney so that they can monitor me for side effects etc, however the next cycles may be more flexible, so that I can spend the week inbetween treatments in Melbourne with family and friends which will be great.
Can you believe this - Fran's husband is an Eye Ophemologist - so we have an appointment with him on Friday, so he can take some scans of what is going on with my eyes, so that we can monitor their progress as we make our way through the next treatment.
We caught up with Tim last night for dinner which was great too!
Lou
x
On Monday we met with Dr McCrystal to give him an update on our successful admittance to the AU drug trial. When he saw my eye he was concerned that it was still so swollen, and as a result referred me to an Acute Opthamologist on the Monday evening. Unfortunately our "good news" was dampened with the fact that my tear duct is blocked probably due to more cancer.....and whilst they were checking everything else, I was diagnosed with Retinal Cancer in both of my eyes! That explains why I have been having so many problems with my vision, which previously they have put down to the brain radiation!!
Anyway, Marc and I flew into Sydney yesterday and met with the AMAZING Fran. We felt as though a weight had been lifted off of our shoulders as soon as we saw her!
So, basically the next steps are to prioritise our "issues" which at the moment are my breathing and lung function - so we are off to start the new trial drug (derived from a clever little sea sponge) this afternoon, and wiil have a further treatment next Thursday, and I will fly home on the Friday (29/10). We have faith that this drug will have an effect on ALL of our tumours, and start getting things under control again. For this cycle I am required to be based in Sydney so that they can monitor me for side effects etc, however the next cycles may be more flexible, so that I can spend the week inbetween treatments in Melbourne with family and friends which will be great.
Can you believe this - Fran's husband is an Eye Ophemologist - so we have an appointment with him on Friday, so he can take some scans of what is going on with my eyes, so that we can monitor their progress as we make our way through the next treatment.
We caught up with Tim last night for dinner which was great too!
Lou
x
Saturday, October 16, 2010
Good things come in 3's
It was a triple tick Friday!!!
Firstly, my best friend from Melbourne - Gina - arrived to stay with us for the weekend.
Secondly, we had a CT scan on Friday morning to see what was causing the swelling below my left eye, as there was a possibility that I had a new brain tumour (it looks as though I have been punched in the face!). The results came back and it is just some inflammation from the radiation (the symptoms from the radiation are really only starting now - sore head etc), so nothing to worry about - and ALL of my previous brain tumours have "reduced significantly"!!!! The large tumor that they were really concerned about (that potentially needed brain surgery) is now "barely visable" - so that was just the BEST news ever. Dr Moller and I read the report together and were just over the moon.
THIRDLY - we had our conversation with my amazing AU Oncologist, Fran, and I have been accepted into part of a new trial drug from England, that is based in Sydney (and potentially Melbourne)!!!! It is a "named patient program", so Fran has thrown my name into the ring so to speak, and I have been accepted!!! I will travel to Sydney by Wednesday next week, have the treatment on Thursday, and the following Thursday, and spend 10 days in Australia in total to be monitored. There is a possibility that I can have the second treatment in Melbourne - however we will see how I go with the initial treatment - it is all so exciting!!! The main side effect is hair loss - so that is no issue :)
We just could not believe our luck.
Gina arrived yesterday, and we have had a great time. Today we went for breakfast (mmmm....eggs benedict), and then to Mission Bay where we walked along the beach in the sun, eating waffle cones from Movenpick Icecream. Tonight we are heading to our local Indian Restaurant for dinner....and then we will plan what we are going to do tomorrow before Gina leaves to go home to her boys (and Tilly Cat).
Lou
x
Firstly, my best friend from Melbourne - Gina - arrived to stay with us for the weekend.
Secondly, we had a CT scan on Friday morning to see what was causing the swelling below my left eye, as there was a possibility that I had a new brain tumour (it looks as though I have been punched in the face!). The results came back and it is just some inflammation from the radiation (the symptoms from the radiation are really only starting now - sore head etc), so nothing to worry about - and ALL of my previous brain tumours have "reduced significantly"!!!! The large tumor that they were really concerned about (that potentially needed brain surgery) is now "barely visable" - so that was just the BEST news ever. Dr Moller and I read the report together and were just over the moon.
THIRDLY - we had our conversation with my amazing AU Oncologist, Fran, and I have been accepted into part of a new trial drug from England, that is based in Sydney (and potentially Melbourne)!!!! It is a "named patient program", so Fran has thrown my name into the ring so to speak, and I have been accepted!!! I will travel to Sydney by Wednesday next week, have the treatment on Thursday, and the following Thursday, and spend 10 days in Australia in total to be monitored. There is a possibility that I can have the second treatment in Melbourne - however we will see how I go with the initial treatment - it is all so exciting!!! The main side effect is hair loss - so that is no issue :)
We just could not believe our luck.
Gina arrived yesterday, and we have had a great time. Today we went for breakfast (mmmm....eggs benedict), and then to Mission Bay where we walked along the beach in the sun, eating waffle cones from Movenpick Icecream. Tonight we are heading to our local Indian Restaurant for dinner....and then we will plan what we are going to do tomorrow before Gina leaves to go home to her boys (and Tilly Cat).
Lou
x
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