Well, I suppose I was due for some bad news....
The echo I had yesterday showed some more fluid had gathered around my heart. I don't know what else, as I haven't seen the report, so I am not sure if the heart function is impeded which is the factor the drug trials group will be looking at. I am preparing however to hear that I have been unsuccessful at getting on the trial. I believe that will probably be the outcome in light of the results of the CT scan I had yesterday too.
It was all bad. Instead of going into too much detail I will recite verbatim, the conclusion from the report ; "Overall there has been progression of the disease, with an increase in size and number of the pulmonary, hepatic and myocardial metastases. Multiple new bilateral breast metastases. Metastasis in the upper right anterior abdominal wall is also larger. New pleural effussions and larger pericardial effusion." For those who get lost in terminology, in my words, more and larger tumours in lungs, liver and heart. New tumours in the breasts. The one in my gut is bigger. There is fluid around my lungs and there is more fluid around my heart than previously.
So as you can gather from that, all is not happy in the Mulcahy household this evening.
Another slap in the face you may say. A wake up call that this is real and it is going to take everything I have to win this fight.........it has one the first round, but it's only the beginning.
Oh, we found out yesterday that the house has been sold. Our lease is valid until February 2010, but the house settles on 11th Nov and the new owners want to live in it, not rent it out. So legally they can't kick us out but it would be nice to get out before it settles. Just something else to occupy us if we found ourselves with some spare time!!!
Well, I am absolutely exhausted and suffering from terrible nausea so I am off to sleep.
Sorry, to drop such a bombshell then run, but that's the internet for you.
I will let you know more as I do....probably tomorrow I will hear about the trial. xxx
NEVER, NEVER, NEVER GIVE UP! Even when they give you shitty news!
Wednesday, September 30, 2009
Monday, September 28, 2009
b-raf follow up
Well, I had my appointment today with Prof Kefford to get the deal on the b-raf trial.
I have a few tests this week, an echocardiogram and CT scan tomorrow, I have to wear a heart monitor for 24 hrs on Wednesday and Thursday and then a PET scan on Wednesday next week. The CT and heart tests are to test my suitability for the trial, so they are the one's I have to pass. If they are all good, I will then have to do a raft of blood and urine tests and an EEG. They will probably be made for Friday or Monday.
The PET scan is to give us a base line for the start of the trial.
They plan on getting me in on 8th October. They don't waste any time at all. I have to wait 4 weeks from chemo to get it out of my system before they can start me on the trial. 28 days is 7th October!!!
So about the trial, the first day I go into the chemo day suite at 7am and am there for 12 hours. I take my first dose on arrival and then am monitored closely. I have blood taken every half hour for the first 2 or 3 hours (I can't remember exactly) and then every hour for the next 6 or 8 hours and then twice more before I go home. Days 2-7 I just take the drug at home but return on day 8 for a similar regime to day 1. On day 8 I also have another PET scan, tumours have shrunk in the first 7 days of taking this drug! Isn't that the most amazing thing you have ever heard. I cried when she told me that......I am really going to beat this! (Just in case you had any doubts!!)
I figure at that rate, I will be CANCER FREE by Christmas, what a great present!
The only thing the doctors are worried about is my heart. The ECG tomorrow will determine whether or not I will be starting the trial on 8th October. If it is unfavourable, in that there is fluid build up again, and the heart isn't beating as strongly as it could be but there is improvement from the ECG in hospital, they will give me another round of chemo and try another ECG in the hope that it will improve enough to get me onto the trial. So I am glad they have a backup plan they just aren't going, "oh well, didn't work too bad move on to the next one."
Once I am on the trial, whether it takes a few goes to get me on it or not, they will have to monitor me very closely because of my heart issues. Another concern they have is how my heart will react if the tumours shrink too quickly. Now isn't that a lovely problem to be faced with!
There are only 15 trial spots available worldwide so you have to have a pretty good case to get onto it. We met the lady this afternoon that puts our case forward to the worldwide committe. She has a very tough job, she has a stack of people that want to get onto this trial, but has to choose only a handful to put forward. It must be heart wrenching, and possibly why you are not allowed to have any contact with them until you are actually b-raf positive confirmed and signed the consent form, so 'a chosen one'.
She said one of the criteria she looks at is age and family situation, so in my case, a 38 year old with a 5, 3 and 4 month old would get a call up before a 90 year old. Not because my life is more valuable, but I have dependants relying on me.
Anyway, we should know fairly quickly the outcome so by the end of the week I expect I will have the good news!
Oh by the way, it's 10:43pm for those who asked!!
Off to sleep now xxx
NEVER, NEVER, NEVER GIVE UP! (Especially now we have b-raf!)
I have a few tests this week, an echocardiogram and CT scan tomorrow, I have to wear a heart monitor for 24 hrs on Wednesday and Thursday and then a PET scan on Wednesday next week. The CT and heart tests are to test my suitability for the trial, so they are the one's I have to pass. If they are all good, I will then have to do a raft of blood and urine tests and an EEG. They will probably be made for Friday or Monday.
The PET scan is to give us a base line for the start of the trial.
They plan on getting me in on 8th October. They don't waste any time at all. I have to wait 4 weeks from chemo to get it out of my system before they can start me on the trial. 28 days is 7th October!!!
So about the trial, the first day I go into the chemo day suite at 7am and am there for 12 hours. I take my first dose on arrival and then am monitored closely. I have blood taken every half hour for the first 2 or 3 hours (I can't remember exactly) and then every hour for the next 6 or 8 hours and then twice more before I go home. Days 2-7 I just take the drug at home but return on day 8 for a similar regime to day 1. On day 8 I also have another PET scan, tumours have shrunk in the first 7 days of taking this drug! Isn't that the most amazing thing you have ever heard. I cried when she told me that......I am really going to beat this! (Just in case you had any doubts!!)
I figure at that rate, I will be CANCER FREE by Christmas, what a great present!
The only thing the doctors are worried about is my heart. The ECG tomorrow will determine whether or not I will be starting the trial on 8th October. If it is unfavourable, in that there is fluid build up again, and the heart isn't beating as strongly as it could be but there is improvement from the ECG in hospital, they will give me another round of chemo and try another ECG in the hope that it will improve enough to get me onto the trial. So I am glad they have a backup plan they just aren't going, "oh well, didn't work too bad move on to the next one."
Once I am on the trial, whether it takes a few goes to get me on it or not, they will have to monitor me very closely because of my heart issues. Another concern they have is how my heart will react if the tumours shrink too quickly. Now isn't that a lovely problem to be faced with!
There are only 15 trial spots available worldwide so you have to have a pretty good case to get onto it. We met the lady this afternoon that puts our case forward to the worldwide committe. She has a very tough job, she has a stack of people that want to get onto this trial, but has to choose only a handful to put forward. It must be heart wrenching, and possibly why you are not allowed to have any contact with them until you are actually b-raf positive confirmed and signed the consent form, so 'a chosen one'.
She said one of the criteria she looks at is age and family situation, so in my case, a 38 year old with a 5, 3 and 4 month old would get a call up before a 90 year old. Not because my life is more valuable, but I have dependants relying on me.
Anyway, we should know fairly quickly the outcome so by the end of the week I expect I will have the good news!
Oh by the way, it's 10:43pm for those who asked!!
Off to sleep now xxx
NEVER, NEVER, NEVER GIVE UP! (Especially now we have b-raf!)
Friday, September 25, 2009
b-raf positive!
Great news!
I am b-raf positive! They rang us this morning as soon as they received notification.
This means now that I have a chance of getting onto the new trial drug that has been showing so many positive results.
Next week I will have a whole heap of tests to make sure I am well enough to go onto the trial. I think it's mostly that your heart, liver and brain are functioning within normal limits.
My biggest risk is my heart. They hook me up to a monitor for an amount of time (of which I'll find out more next week) and then check to make sure it's strong enough to take the drug.
I will find out more on Monday so I will fill you in on the details then. At the moment I just have a handful of appointments and a 20 page document I need to sift through and sign before they can put me forward. I can't imagine that there is anything in the release document that I wouldn't be happy to sign? Oh well, let's wait and see!
I was completely spoilt yesterday for my birthday. Jason got me an eternity ring. It was a complete surprise and is absolutely beautiful....just like him! The boys got me a diamond heart pendant that apparently Matt picked out on his own. Before going to a jewellery store he already knew he wanted to get that. I think he will make some woman very happy one day. Thoughtful with great taste, what an awesome combination.
We saw the psychologist today about Matt. She had some good ideas and some resources that we could use so we will see how those go over the next few days. It seems we were pretty much doing the right thing anyway, but there are some stories specifically targetted to young children with a parent with cancer that could be helpful.
You wouldn't believe that the staff at Matt and Andy's kindy, Kindalin West Pennant Hills, put in a whole lot of groceries for a hamper for us. I think it will last us a month! Just so thoughtful again......people never cease to amaze me.
I think that's about it for today....it can't get better than the b-raf news can it!! It was well worth the wait.
Best be off to sleep now, keep my body strong to fight this. I AM going to beat this.
Until next time xxx
NEVER, NEVER, NEVER GIVE UP
I am b-raf positive! They rang us this morning as soon as they received notification.
This means now that I have a chance of getting onto the new trial drug that has been showing so many positive results.
Next week I will have a whole heap of tests to make sure I am well enough to go onto the trial. I think it's mostly that your heart, liver and brain are functioning within normal limits.
My biggest risk is my heart. They hook me up to a monitor for an amount of time (of which I'll find out more next week) and then check to make sure it's strong enough to take the drug.
I will find out more on Monday so I will fill you in on the details then. At the moment I just have a handful of appointments and a 20 page document I need to sift through and sign before they can put me forward. I can't imagine that there is anything in the release document that I wouldn't be happy to sign? Oh well, let's wait and see!
I was completely spoilt yesterday for my birthday. Jason got me an eternity ring. It was a complete surprise and is absolutely beautiful....just like him! The boys got me a diamond heart pendant that apparently Matt picked out on his own. Before going to a jewellery store he already knew he wanted to get that. I think he will make some woman very happy one day. Thoughtful with great taste, what an awesome combination.
We saw the psychologist today about Matt. She had some good ideas and some resources that we could use so we will see how those go over the next few days. It seems we were pretty much doing the right thing anyway, but there are some stories specifically targetted to young children with a parent with cancer that could be helpful.
You wouldn't believe that the staff at Matt and Andy's kindy, Kindalin West Pennant Hills, put in a whole lot of groceries for a hamper for us. I think it will last us a month! Just so thoughtful again......people never cease to amaze me.
I think that's about it for today....it can't get better than the b-raf news can it!! It was well worth the wait.
Best be off to sleep now, keep my body strong to fight this. I AM going to beat this.
Until next time xxx
NEVER, NEVER, NEVER GIVE UP
Wednesday, September 23, 2009
Not quite firing on all cylinders
I am sorry to say that I am still feeling pretty ordinary. I am not sure exactly what it is, part nausea and part pain I guess, but just generally don't feel anywhere near my best. I expect that the dust hanging around today probably added to the problem making me cough which of course leads to the pain! Unfortunately, I had to go out too, (I had planned on staying indoors and not moving from my room), so there was no avoiding it.
It was quite funny actually, my appointment today was with the palliative care doctor. I had no idea I had an appointment and when the community nurse, Jenelle, got here she had to ring him to get different anti-nausea medication for me. When she spoke to him he said, "Oh, she is next on my list", and Jenelle said "Well she's sitting right here in front of me so I am guessing she won't be next up!". Woops!!
She quickly set up my pump and thankfully Jason was home today so he raced me straight up there. They waited for me to get there which I thought was nice but they didn't change any of my drugs, just added this anti-nausea one.
For some reason it can't go in the same line as the pump so they had to put in another sub-cut butterfly needle. Now I have one in either side of my tummy which means I am going to have to sleep on my back. Oh no.....how will I ever survive!
You may have noticed I am feeling a bit down about the whole thing today. I think I have had enough. Time to wake up from the nightmare and get on with life I think.........
I weighed myself on their scales at the clinic today too, I can't remember if I had already written on here just before they admitted me to hospital I was 75kg of which 13kg was fluid as my usual weight is 62kg. I weighed today at 65kg so all that excess fluid has just about gone which is great! I am guessing it also keeps fluid down around my organs so fingers crossed that the heart won't start getting fluid build up around it again.
Do you believe they still don't have the B-raf result. We ended up ringing yesterday because we couldn't wait until my appointment on Monday, but they still don't have it. That's been 4 weeks! I think Jason may actually go down and speak to the pathologists in Melbourne in person if we don't have an answer soon.
Of course, if we don't have an answer before Wednesday and my blood tests come back normal I will have cycle 2 of DTIC I would expect, which I don't really want either. Although my veins are finally starting to come back a bit I think! For someone who hates needles.....man I have them all the time!!
My biggest issue at the moment is Matt. If only there was an easy way to help our kids through this stuff.....
When I wake up in the mornings, my cough is at it's worst. It hacks for about 30 mins and sounds dreadful, kind of between choking and vomiting, (sorry for the graphics but I am trying to get you to see what Matty sees!). Yesterday morning, I had come down for brekky and was sitting at the bench next to the fish and in front of Matt's teddy bear. I started my coughing fit....Matt came over took his teddy and asked me to move away from the fish because if I coughed on them they would catch cancer and die.
Now while that hurt terribly for me, can you even begin to imagine what is going on in his head? How scared he must be? How he sees this situation? My poor baby boy.
Then add to that the fact he cries everytime we part because he thinks I am going back to hospital and he doesn't like that. It's really, really awful. I wish I could take it all away for him. A 5 year old shouldn't have to worry about awful stuff like that. His biggest worry should be whether Andy is going to try and play with his favourite toy!!
Anyway, subject change....it's my birthday tomorrow...38. My God, where does the time go! I am catching up with an old friend on Friday and I have been thinking about old times hanging out as teenagers. Life was so simple back then, I wish you had the wisdom as a teenager to appreciate it! Instead, you spend all your time though complaining about how tough you have it...funny isn't it.
I don't think there is anything else to report. Everything else is same old, same old. The trivia night is looking good, just a reminder to make sure you RSVP to Sharon with definite numbers as soon as you can if you are going.
Till next time xxxx
NEVER, NEVER, NEVER GIVE UP
It was quite funny actually, my appointment today was with the palliative care doctor. I had no idea I had an appointment and when the community nurse, Jenelle, got here she had to ring him to get different anti-nausea medication for me. When she spoke to him he said, "Oh, she is next on my list", and Jenelle said "Well she's sitting right here in front of me so I am guessing she won't be next up!". Woops!!
She quickly set up my pump and thankfully Jason was home today so he raced me straight up there. They waited for me to get there which I thought was nice but they didn't change any of my drugs, just added this anti-nausea one.
For some reason it can't go in the same line as the pump so they had to put in another sub-cut butterfly needle. Now I have one in either side of my tummy which means I am going to have to sleep on my back. Oh no.....how will I ever survive!
You may have noticed I am feeling a bit down about the whole thing today. I think I have had enough. Time to wake up from the nightmare and get on with life I think.........
I weighed myself on their scales at the clinic today too, I can't remember if I had already written on here just before they admitted me to hospital I was 75kg of which 13kg was fluid as my usual weight is 62kg. I weighed today at 65kg so all that excess fluid has just about gone which is great! I am guessing it also keeps fluid down around my organs so fingers crossed that the heart won't start getting fluid build up around it again.
Do you believe they still don't have the B-raf result. We ended up ringing yesterday because we couldn't wait until my appointment on Monday, but they still don't have it. That's been 4 weeks! I think Jason may actually go down and speak to the pathologists in Melbourne in person if we don't have an answer soon.
Of course, if we don't have an answer before Wednesday and my blood tests come back normal I will have cycle 2 of DTIC I would expect, which I don't really want either. Although my veins are finally starting to come back a bit I think! For someone who hates needles.....man I have them all the time!!
My biggest issue at the moment is Matt. If only there was an easy way to help our kids through this stuff.....
When I wake up in the mornings, my cough is at it's worst. It hacks for about 30 mins and sounds dreadful, kind of between choking and vomiting, (sorry for the graphics but I am trying to get you to see what Matty sees!). Yesterday morning, I had come down for brekky and was sitting at the bench next to the fish and in front of Matt's teddy bear. I started my coughing fit....Matt came over took his teddy and asked me to move away from the fish because if I coughed on them they would catch cancer and die.
Now while that hurt terribly for me, can you even begin to imagine what is going on in his head? How scared he must be? How he sees this situation? My poor baby boy.
Then add to that the fact he cries everytime we part because he thinks I am going back to hospital and he doesn't like that. It's really, really awful. I wish I could take it all away for him. A 5 year old shouldn't have to worry about awful stuff like that. His biggest worry should be whether Andy is going to try and play with his favourite toy!!
Anyway, subject change....it's my birthday tomorrow...38. My God, where does the time go! I am catching up with an old friend on Friday and I have been thinking about old times hanging out as teenagers. Life was so simple back then, I wish you had the wisdom as a teenager to appreciate it! Instead, you spend all your time though complaining about how tough you have it...funny isn't it.
I don't think there is anything else to report. Everything else is same old, same old. The trivia night is looking good, just a reminder to make sure you RSVP to Sharon with definite numbers as soon as you can if you are going.
Till next time xxxx
NEVER, NEVER, NEVER GIVE UP
Sunday, September 20, 2009
Side Effects
Well, it seems like those dreaded chemo side effects have finally caught up with me. They told me the worst time would be 7 - 14 days after treatment and we are smack bang in the middle of that now.
The nausea is the most prevalent thing, but I got a fright last night when my nose started bleeding profusely! I freaked out. Of course it always seems a lot worse than it actually is when it's night time and you aren't expecting it. Once I checked the informamation they gave me about DTIC and it's side effects and saw that bleeding is one of them I felt a bit better. I find comfort in knowing why something is happening. I may not understand or agree with it, but if I know why I feel better somehow.
The pump has been running like a gem the past 24 hours. Unfortunately, we had a bit of a hiccough with it, not last night but the night before. Firstly, it kept stopping. It would go for 20 - 30 mins, beep and then stop. I would fiddle with it for a bit and it would start again. They came out and swapped it for a new one because I obviously can't be fiddling with it during the night all night. It seems when they reset the new pump they had set it too fast as it ran through during the night and was finished before I woke up. This was not good given they had been burning off on Saturday so I had been coughing all Saturday afternoon/night so I was in a bit of pain in the morning with no drugs from the pump!
Anyway, the nurse came around mid morning and fixed it all up for me, so the pain was back under control but unfortunately there's not too much more they can do for the nausea.
Oh, I finally had one of those green juices yesterday. Yes I am a procrastinator!!! It wasn't awful, but you cerainly won't find me running to the fridge to find some more! The juices are really good for the nausea too. When you feel like you can't stomach any food at least you know you are getting some good stuff - nutrients and stuff.
My friends came over on Saturday and it was so wonderful to see them. You know real friends when it can be so long since you have seen each other but it was just like we picked up where we had left off all those years ago. I said there were 3 coming but there were actually 4 and then I had another visit later in the day from another 2. I am feeling very spoilt!
Jason has gone back to work today. Let's see how he goes.....I am guessing his feet won't even touch the ground today, it has been 4 weeks now since he was in the office. It will be nice for him to get out into the real world again and try to get some normality back into his life. Well, as much as you can under the circumstances.
Well, I'm off to have my nebuliser and hopefully stop this cough for a bit.
Talk soon xxxx
NEVER, NEVER, NEVER GIVE UP!
The nausea is the most prevalent thing, but I got a fright last night when my nose started bleeding profusely! I freaked out. Of course it always seems a lot worse than it actually is when it's night time and you aren't expecting it. Once I checked the informamation they gave me about DTIC and it's side effects and saw that bleeding is one of them I felt a bit better. I find comfort in knowing why something is happening. I may not understand or agree with it, but if I know why I feel better somehow.
The pump has been running like a gem the past 24 hours. Unfortunately, we had a bit of a hiccough with it, not last night but the night before. Firstly, it kept stopping. It would go for 20 - 30 mins, beep and then stop. I would fiddle with it for a bit and it would start again. They came out and swapped it for a new one because I obviously can't be fiddling with it during the night all night. It seems when they reset the new pump they had set it too fast as it ran through during the night and was finished before I woke up. This was not good given they had been burning off on Saturday so I had been coughing all Saturday afternoon/night so I was in a bit of pain in the morning with no drugs from the pump!
Anyway, the nurse came around mid morning and fixed it all up for me, so the pain was back under control but unfortunately there's not too much more they can do for the nausea.
Oh, I finally had one of those green juices yesterday. Yes I am a procrastinator!!! It wasn't awful, but you cerainly won't find me running to the fridge to find some more! The juices are really good for the nausea too. When you feel like you can't stomach any food at least you know you are getting some good stuff - nutrients and stuff.
My friends came over on Saturday and it was so wonderful to see them. You know real friends when it can be so long since you have seen each other but it was just like we picked up where we had left off all those years ago. I said there were 3 coming but there were actually 4 and then I had another visit later in the day from another 2. I am feeling very spoilt!
Jason has gone back to work today. Let's see how he goes.....I am guessing his feet won't even touch the ground today, it has been 4 weeks now since he was in the office. It will be nice for him to get out into the real world again and try to get some normality back into his life. Well, as much as you can under the circumstances.
Well, I'm off to have my nebuliser and hopefully stop this cough for a bit.
Talk soon xxxx
NEVER, NEVER, NEVER GIVE UP!
Friday, September 18, 2009
My new friend - "the pump"
Well the new pump is great!
I woke up this morning and felt the most like a normal person, mostly pain free, that I have felt in months. It was great!!
The better news was, that the pump had actually stopped working during the night so I hadn't even got my full dose. It makes me think how good I will feel tomorrow morning, can't wait! The nurses fixed it up when they got here mid morning but it means that the timing is out now with it needing to be changed at 5:30am! Which I think is probably a bigger issue for them than me, given they have to come here to do it whereas I just have to wait. They will manage it over the next few days though to try and get it back to a more reasonable timing.
They are so wonderful and helpful. I am very lucky when it comes to all that kind of stuff. I always seem to be lucky enough to get the the really sweet helpful nurses. She makes me laugh, I am starting to think she is actually coming to have a nurse and play with Hamish rather than to see me!
The massage was great too! I have to wonder if that also led to the good feeling when I woke this morning. There is a lot to be said for the power of touch and when it comes to healing I think it's integral.
The other thing that has blown me away is people organising fund raising for us. Thank you so much to you. Again we appreciate it more than you can imagine. Every little bit helps Jason the boys and I and the fact that they will be held in different areas with different groups of people just helps to make it inclusive of everyone who wants to be involved.
So for those that are interested, I know of 2 definite events...a trivia night at North Ryde RSL on 9th Oct, and a night at Glenmore Heritage Valley Golf Club Mulgoa not sure on the date yet, but not too far away. I will keep you posted on details as I become aware of them. They should both be fun nights from what I have heard is in store.
I am a bit excited for this weekend, 3 of my best friends from high school are coming to visit and I haven't seen them in YEARS. It's kind of sad that shitty stuff finally brings you back face to face, but great that we have the opportunity to catch up again. Love you guys.
I am ready for a big sleep tonight, Matt had an earache last night so kept Jason and I up for most of the night, so it will be nice to have a decent sleep and with the new medication, if the relief is constant I should sleep soundly. Can't wait!!!
Sleep well
NEVER, NEVER, NEVER GIVE UP. xxxx
I woke up this morning and felt the most like a normal person, mostly pain free, that I have felt in months. It was great!!
The better news was, that the pump had actually stopped working during the night so I hadn't even got my full dose. It makes me think how good I will feel tomorrow morning, can't wait! The nurses fixed it up when they got here mid morning but it means that the timing is out now with it needing to be changed at 5:30am! Which I think is probably a bigger issue for them than me, given they have to come here to do it whereas I just have to wait. They will manage it over the next few days though to try and get it back to a more reasonable timing.
They are so wonderful and helpful. I am very lucky when it comes to all that kind of stuff. I always seem to be lucky enough to get the the really sweet helpful nurses. She makes me laugh, I am starting to think she is actually coming to have a nurse and play with Hamish rather than to see me!
The massage was great too! I have to wonder if that also led to the good feeling when I woke this morning. There is a lot to be said for the power of touch and when it comes to healing I think it's integral.
The other thing that has blown me away is people organising fund raising for us. Thank you so much to you. Again we appreciate it more than you can imagine. Every little bit helps Jason the boys and I and the fact that they will be held in different areas with different groups of people just helps to make it inclusive of everyone who wants to be involved.
So for those that are interested, I know of 2 definite events...a trivia night at North Ryde RSL on 9th Oct, and a night at Glenmore Heritage Valley Golf Club Mulgoa not sure on the date yet, but not too far away. I will keep you posted on details as I become aware of them. They should both be fun nights from what I have heard is in store.
I am a bit excited for this weekend, 3 of my best friends from high school are coming to visit and I haven't seen them in YEARS. It's kind of sad that shitty stuff finally brings you back face to face, but great that we have the opportunity to catch up again. Love you guys.
I am ready for a big sleep tonight, Matt had an earache last night so kept Jason and I up for most of the night, so it will be nice to have a decent sleep and with the new medication, if the relief is constant I should sleep soundly. Can't wait!!!
Sleep well
NEVER, NEVER, NEVER GIVE UP. xxxx
Wednesday, September 16, 2009
Crappy day - with some good stuff too though!
First, I want to thank our mystery Santa shopper who obviously reads this, based on the package left on our front doorstep this morning. I didn't get to juicing the cabbage today but I will tomorrow, I promise! And to everyone else for your support it has been truly overwhelming and we are so grateful that we are lucky enough to such beautiful friends and family. Thank you.
I decided today that the crappy feeling is the chemo side effects, the nausea is getting worse and unfortunately the pain is back with avengence! Not good when you are still coughing incessantly.
On the upside though, the nurse who comes out to see me regularly can fix it all! She made a couple of phone calls and organised for more pain relief and nausea medication so by this time tomorrow I expect to be on top of the world!
It was great to see this nurse at work.....she has obviously been doing it for a while. She got on the phone to the Palliative care doctor at the hospital who of course wanted to admit me again to "stabilise" me. She very nicely but firmly suggested that perhaps we could try getting me onto a pump at home to avoid another hospital stay given I have young children with whom I would like to be with at home.
She managed to convince him, thanks so much Jenelle! She bought us some time so at least we have a chance to see if the pump can work before they will try to admit me again.
I am really amazed at how much community health assistance is around. I guess you don't normally have a need for it so it's not something you would just happen to stumble across. They have a child bereavement counsellor that Matt can sit down with and we can see where he is at with all of this. The nurse was here for about 2.5 hours and in that time saw Matt really acting up, which we can only assume is his way of reacting to everything going on. Talking to this lady will hopefully give him a chance to let out some stuff.....and help us understand a little better what's going on in his head.....if that's possible!!! Oh, and I think the counselling is free!
If nothing else is achieved he will have the hugest 5 year old medical vocabulary in the world. It's amazing what he remembers and then regurgitates in the correct context which is more surprising.
Apart from new drugs tomorrow, I have another high point planned. I have an oncology massage booked at 2pm. I can't wait. He comes to your house so it's all stress free I basically just have to move from the chair to the massage table relax and it's done. Doesn't get any better than that!
Best be off to sleep now xxx
NEVER, NEVER, NEVER GIVE UP!
I decided today that the crappy feeling is the chemo side effects, the nausea is getting worse and unfortunately the pain is back with avengence! Not good when you are still coughing incessantly.
On the upside though, the nurse who comes out to see me regularly can fix it all! She made a couple of phone calls and organised for more pain relief and nausea medication so by this time tomorrow I expect to be on top of the world!
It was great to see this nurse at work.....she has obviously been doing it for a while. She got on the phone to the Palliative care doctor at the hospital who of course wanted to admit me again to "stabilise" me. She very nicely but firmly suggested that perhaps we could try getting me onto a pump at home to avoid another hospital stay given I have young children with whom I would like to be with at home.
She managed to convince him, thanks so much Jenelle! She bought us some time so at least we have a chance to see if the pump can work before they will try to admit me again.
I am really amazed at how much community health assistance is around. I guess you don't normally have a need for it so it's not something you would just happen to stumble across. They have a child bereavement counsellor that Matt can sit down with and we can see where he is at with all of this. The nurse was here for about 2.5 hours and in that time saw Matt really acting up, which we can only assume is his way of reacting to everything going on. Talking to this lady will hopefully give him a chance to let out some stuff.....and help us understand a little better what's going on in his head.....if that's possible!!! Oh, and I think the counselling is free!
If nothing else is achieved he will have the hugest 5 year old medical vocabulary in the world. It's amazing what he remembers and then regurgitates in the correct context which is more surprising.
Apart from new drugs tomorrow, I have another high point planned. I have an oncology massage booked at 2pm. I can't wait. He comes to your house so it's all stress free I basically just have to move from the chair to the massage table relax and it's done. Doesn't get any better than that!
Best be off to sleep now xxx
NEVER, NEVER, NEVER GIVE UP!
Monday, September 14, 2009
The Au Pair!
Well, Melissa, our Au Pair started today.
For those of you that didn't know, Jason did all the organising and interviewing because I was in hospital, so I met her for the first time this morning.
It seems like he has done a good job! She's not Swedish, with a figure to envy Jennifer Hawkins, but from the US with a love for kids and really easy going. Of course it's very early days yet, but from the conversations we have had so far the match seems pretty good. She seemed to handle witching hour in her stride which I think is an impressive feat for anybody let alone a first day on the job carer.
I am feeling a bit crappy today......can't figure out if it's lack of sleep, pain or chemo side effects but I just don't feel right. It kinda makes everything feel crappy. It's 11pm and I am about to have my shower for the day. I guess on the upside, it meant I had a lot of rest, and I think sleep is one of the best healers.
Oh and the juicer is fantastic! I am a big fan of carrot juice....yummo. I have found though that adding mandarins in their skins can spoil a very nice juice so make a note of that one. I am going to start experimenting tomorrow with different veges that are supposed to support different parts of your body. Some of them sound pretty ordinary though, there is a green juice that has like cabbage, spinach, celery, capsicum and parsley. Doesn't that sound appetising!! Jason assures me it doesn't have to taste great, just as long as it's doing something good for you is all that matters.
Anyway, I am getting these recipes from the Ian Gawler cookbook so if anyone knows of any other juice recipes let me know and I'll give them a go. It couldn't get worse than cabbage juice could it??
Well I'd better go have this shower, until next time
NEVER, NEVER, NEVER GIVE UP xxxx
For those of you that didn't know, Jason did all the organising and interviewing because I was in hospital, so I met her for the first time this morning.
It seems like he has done a good job! She's not Swedish, with a figure to envy Jennifer Hawkins, but from the US with a love for kids and really easy going. Of course it's very early days yet, but from the conversations we have had so far the match seems pretty good. She seemed to handle witching hour in her stride which I think is an impressive feat for anybody let alone a first day on the job carer.
I am feeling a bit crappy today......can't figure out if it's lack of sleep, pain or chemo side effects but I just don't feel right. It kinda makes everything feel crappy. It's 11pm and I am about to have my shower for the day. I guess on the upside, it meant I had a lot of rest, and I think sleep is one of the best healers.
Oh and the juicer is fantastic! I am a big fan of carrot juice....yummo. I have found though that adding mandarins in their skins can spoil a very nice juice so make a note of that one. I am going to start experimenting tomorrow with different veges that are supposed to support different parts of your body. Some of them sound pretty ordinary though, there is a green juice that has like cabbage, spinach, celery, capsicum and parsley. Doesn't that sound appetising!! Jason assures me it doesn't have to taste great, just as long as it's doing something good for you is all that matters.
Anyway, I am getting these recipes from the Ian Gawler cookbook so if anyone knows of any other juice recipes let me know and I'll give them a go. It couldn't get worse than cabbage juice could it??
Well I'd better go have this shower, until next time
NEVER, NEVER, NEVER GIVE UP xxxx
Saturday, September 12, 2009
I'm Home
Wow, the difference between waking up to a lady with a needle trolley and your 3 beautiful sons is incredible. So incredibly happy to be home at last.
While in hospital I met people who have been there for months at a time, their strength amazes me, I have no idea how they do it. It makes my 2 weeks pale in comparison.
The trickiest thing so far is keeping on top of the "drug regimen". Someone going from never taking medication to some ridiculous amount of tablets per day that I have to take at certain times then add to that nebulisers and "mixes", it's all a bit foreign. I used to wonder why people needed pill boxes but now I get it!
As for the anxiety I managed to get through the first day without trying to take over the household again let's see if I can keep it up. If Jason has anything to do with it I'll have no choice but to be couch bound with everybody waiting on me hand and foot.
As for how I feel today physically the cough is getting worse again, I'm 3 days after Chemo and still no vomitting but I think the fatigue is starting. Emotionally happy to be home but still can't comprehend my new reality.
By the way, bought a you beaut juicing machine and plan to use it tomorrow so I will let you know how it goes. Apparently juicing is considered to be a great way to get nutrients and vitamins when you are figthing cancer.
NEVER, NEVER, NEVER GIVE UP xxx
While in hospital I met people who have been there for months at a time, their strength amazes me, I have no idea how they do it. It makes my 2 weeks pale in comparison.
The trickiest thing so far is keeping on top of the "drug regimen". Someone going from never taking medication to some ridiculous amount of tablets per day that I have to take at certain times then add to that nebulisers and "mixes", it's all a bit foreign. I used to wonder why people needed pill boxes but now I get it!
As for the anxiety I managed to get through the first day without trying to take over the household again let's see if I can keep it up. If Jason has anything to do with it I'll have no choice but to be couch bound with everybody waiting on me hand and foot.
As for how I feel today physically the cough is getting worse again, I'm 3 days after Chemo and still no vomitting but I think the fatigue is starting. Emotionally happy to be home but still can't comprehend my new reality.
By the way, bought a you beaut juicing machine and plan to use it tomorrow so I will let you know how it goes. Apparently juicing is considered to be a great way to get nutrients and vitamins when you are figthing cancer.
NEVER, NEVER, NEVER GIVE UP xxx
Thursday, September 10, 2009
Going home!
Hooray.....I am going home this arvo!
I don't want to get too excited though until I am actually walking out the door. If there is one thing you learn very quickly it's that you have to be flexible. You have to be ready to change all plans from one hour to the next. That's a little difficult to come to terms with when you are a control freak like me.
There is nothing worse than losing control, and I find that I have lost control everywhere. Maybe that's what this is all about for me.........a lesson in learning to let go. Pretty drastic measure to go to though I must say. It even makes the whole going home event difficult, while I am obviously thrilled to be going home, I am also a bit apprehensive.......
Everything has changed now. I can't do the things I used to do, I won't be able to do anything much really, except hang out on the lounge and spend as much time with my beautiful boys as I can. While that does sound very appealing, for someone who is a control freak, very anal, and likes to be the one doing all the work because of course no-one can do it as well as me, this is a very daunting prospect.
I am still struggling to come to terms with how 3 weeks ago I was researching buying a campertrailer for family holidays for the next 15 years or so with the boys, and within 24 hours your world is turned upside down and the next thing you are planning a funeral. How does that happen? And so suddenly.
Anyway, on a brighter note my first chemo cycle seems to have gone OK so far, (touch wood). Minimal nausea and no vomiting. Apparently the worst time is 7-14 days after infusion so maybe I shouldn't be getting too excited just yet!!
With any luck though, I won't need to go back onto this drug because my result for the b-raf gene will have come back positive and I will be able to move on to the new trial drug in a fortnight. Then I'll really give this Melanoma what for. Man has it picked the wrong body to take up residence.
Well, that's it for now xxx
NEVER, NEVER, NEVER GIVE UP!
I don't want to get too excited though until I am actually walking out the door. If there is one thing you learn very quickly it's that you have to be flexible. You have to be ready to change all plans from one hour to the next. That's a little difficult to come to terms with when you are a control freak like me.
There is nothing worse than losing control, and I find that I have lost control everywhere. Maybe that's what this is all about for me.........a lesson in learning to let go. Pretty drastic measure to go to though I must say. It even makes the whole going home event difficult, while I am obviously thrilled to be going home, I am also a bit apprehensive.......
Everything has changed now. I can't do the things I used to do, I won't be able to do anything much really, except hang out on the lounge and spend as much time with my beautiful boys as I can. While that does sound very appealing, for someone who is a control freak, very anal, and likes to be the one doing all the work because of course no-one can do it as well as me, this is a very daunting prospect.
I am still struggling to come to terms with how 3 weeks ago I was researching buying a campertrailer for family holidays for the next 15 years or so with the boys, and within 24 hours your world is turned upside down and the next thing you are planning a funeral. How does that happen? And so suddenly.
Anyway, on a brighter note my first chemo cycle seems to have gone OK so far, (touch wood). Minimal nausea and no vomiting. Apparently the worst time is 7-14 days after infusion so maybe I shouldn't be getting too excited just yet!!
With any luck though, I won't need to go back onto this drug because my result for the b-raf gene will have come back positive and I will be able to move on to the new trial drug in a fortnight. Then I'll really give this Melanoma what for. Man has it picked the wrong body to take up residence.
Well, that's it for now xxx
NEVER, NEVER, NEVER GIVE UP!
Wednesday, September 9, 2009
First post (as opposed to the last one!)
Well, I figure I have to start this sometime, and now seems as good a time as any! At the pace that everything is moving it will all be over before I begin so I need to get a start.
I am told as well as being incredibly useful in keeping everyone up to date I might find it really therapeutic as well. We'll see I guess.
Brief background
At the risk of boring everyone, including myself to tears, I will just quickly go back over the start of this journey as a reminder of how quickly this insidious disease can turn your life upside down.
In March 2007, I was diagnosed with Melanoma. The original tumour on my back had already penetrated the tissue and made it's way to the lymph nodes in my left armpit. In a whirlwind of appointments and hospital stays, I had the intial tumour removed, then all the lymph nodes in the left armpit (an axilla clearance). I then started on a month of adjuvent therapy, Interferon, a form of chemo but not cytotoxic like chemo it was actually immunotherapy which builds the immune system to kill the cancer. I didn't manage to finish the treatment, it made me too ill, so I was pulled of about a week early. By July 2007, they were happy with my prognosis. As far as they could tell, all signs of disease were gone and there was no reason for any further concern.
We went on with life pretty much as normal....except I decided not to return to work and changed my career path to start studying Naturopathy. We faced decisions a little differently too I guess, like the decision to take the family to Europe with Jason for business trip, just because we could! Everyone thought we were mad taking a 13 month old and a 3 year old but it was a fantastic experience I would never change if given the opportunity.
20th August 2009
I wake up in the Emergency room at about 4pm.......I have no clue what has happened and am told by Jason that I had some kind of fit or seizure at about 4am. He had called the ambulance and they had brought me to the hospital and heavily sedated me and done some tests. The next thing, a Neurologist comes to speak to us and says they can't find anything neurological that would have caused the episode, however we have found cancer in your liver and lungs.
SHIT! Did he just say what I think he said??? No, must still be drugged go back to sleep.
Wake up again about 30 mins later and ask Jason and Scott, was that real?? Unfortunately, yes it was.
21st August 2009
I was admitted to the San and they did a few more scans that morning. The afternoon was the drop of the first bombshell. A visit from my surgical oncologist confirmed the news I had received the previous day but worse still, when I forced him into a corner to get some idea of how serious this was his response was "months". SHIT again! It is inoperable and there is no effective treatment currently available for Melanoma. My only hope is a trial that has only just started where I am required to have a particular gene - braf - and this new very promising drug can give me some hope.
I stayed in hospital for a few more days, I was feeling pretty crap and the cough I had had depleted me of sleep for so long, the first chance my body had to rest it was going to take it whether I liked it or not!
They let me go home on Thursday 27th August after making an appointment for me to see the medical oncologist in Westmead on Monday 31st August.
First appointment at Westmead
I turn up to my first appointment a little scared/apprehensive but am assured by Jason that "it's not like they can give us any worse news is it?" A piece of advice for everyone, don't ever be too sure about that........it can get worse!!
Anyway, I finally see the doctor and sure enough it is worse than we had thought. Not only was the cancer in my lungs and liver but it is attacking my heart. This has put enormous pressure on my heart in the form of surrounding it by fluid. The ramifications of this heart failure are the most urgent medical problem at the moment and they need to admit me immediately to get it seen to. Also during this appointment, the reality of "months" to live was hammered home. You see when the first doctor had said months, I thought 12 months....at least! However, this doctor was talking 1 or 2 months. SHIT!!! Again!!
Hospital stay
They literally took me straight from the room I was having my appointment in straight up to a ward and the tests and poking and prodding started.
The only way to relieve the pressure from my heart was to drain the fluid manually. This is a horrible procedure that I was awake through and it hurt like hell and I thought I was going to die! If it was not for an angel of a nurse that was there for me after the procedure I think I wouldhave given up then and there......seriously.
They took off 550ml of fluid, that's a lot I would think given your heart isn't really that big in the scheme of things!!
Anyway, it took about 24 hours to get that pain under control and I was moved back to the oncology ward.
I have been here ever since....they are trying to get my pain relief right before I go home. Unfortunately, because the cough is so bad, (caused by the tumours in my lungs), everything hurts. I am living on pain killers and nebulisers amazing how fast things deteriorate.....
Today I had my first cycle of chemo. While there is not much hope that this chemo drug will actually do anything as far as stalling the cancer goes, it is the only option they have and I have to have tried a different chemo before I am allowed to go on the trial drug with the b-raf gene.
So hopefully, I will be out of here soon, maybe Friday, with enough pain meds to let me have some play time with my boys, and with a positive result on this b-raf gene and then I can be on the road to getting rid of this horrible disease out of my body once and for all!
I have many questions, but the most prevalent one at the moment is how can I be planning buying a camper trailer for our family holidays for the next 15 years and 3 weeks later be planning my funeral? It just doesn't make sense............
I am a little bit of my face at the moment with all the drugs and a bit sleepy, so I will probably read this tomorrow and go, "oh my God, what was I thinking". Hope it has brought you up to date on where we are medically. I am sure I have left out lots, but I can always pick it up on another day!
My motto........NEVER, NEVER, NEVER GIVE UP!
xxx
I am told as well as being incredibly useful in keeping everyone up to date I might find it really therapeutic as well. We'll see I guess.
Brief background
At the risk of boring everyone, including myself to tears, I will just quickly go back over the start of this journey as a reminder of how quickly this insidious disease can turn your life upside down.
In March 2007, I was diagnosed with Melanoma. The original tumour on my back had already penetrated the tissue and made it's way to the lymph nodes in my left armpit. In a whirlwind of appointments and hospital stays, I had the intial tumour removed, then all the lymph nodes in the left armpit (an axilla clearance). I then started on a month of adjuvent therapy, Interferon, a form of chemo but not cytotoxic like chemo it was actually immunotherapy which builds the immune system to kill the cancer. I didn't manage to finish the treatment, it made me too ill, so I was pulled of about a week early. By July 2007, they were happy with my prognosis. As far as they could tell, all signs of disease were gone and there was no reason for any further concern.
We went on with life pretty much as normal....except I decided not to return to work and changed my career path to start studying Naturopathy. We faced decisions a little differently too I guess, like the decision to take the family to Europe with Jason for business trip, just because we could! Everyone thought we were mad taking a 13 month old and a 3 year old but it was a fantastic experience I would never change if given the opportunity.
20th August 2009
I wake up in the Emergency room at about 4pm.......I have no clue what has happened and am told by Jason that I had some kind of fit or seizure at about 4am. He had called the ambulance and they had brought me to the hospital and heavily sedated me and done some tests. The next thing, a Neurologist comes to speak to us and says they can't find anything neurological that would have caused the episode, however we have found cancer in your liver and lungs.
SHIT! Did he just say what I think he said??? No, must still be drugged go back to sleep.
Wake up again about 30 mins later and ask Jason and Scott, was that real?? Unfortunately, yes it was.
21st August 2009
I was admitted to the San and they did a few more scans that morning. The afternoon was the drop of the first bombshell. A visit from my surgical oncologist confirmed the news I had received the previous day but worse still, when I forced him into a corner to get some idea of how serious this was his response was "months". SHIT again! It is inoperable and there is no effective treatment currently available for Melanoma. My only hope is a trial that has only just started where I am required to have a particular gene - braf - and this new very promising drug can give me some hope.
I stayed in hospital for a few more days, I was feeling pretty crap and the cough I had had depleted me of sleep for so long, the first chance my body had to rest it was going to take it whether I liked it or not!
They let me go home on Thursday 27th August after making an appointment for me to see the medical oncologist in Westmead on Monday 31st August.
First appointment at Westmead
I turn up to my first appointment a little scared/apprehensive but am assured by Jason that "it's not like they can give us any worse news is it?" A piece of advice for everyone, don't ever be too sure about that........it can get worse!!
Anyway, I finally see the doctor and sure enough it is worse than we had thought. Not only was the cancer in my lungs and liver but it is attacking my heart. This has put enormous pressure on my heart in the form of surrounding it by fluid. The ramifications of this heart failure are the most urgent medical problem at the moment and they need to admit me immediately to get it seen to. Also during this appointment, the reality of "months" to live was hammered home. You see when the first doctor had said months, I thought 12 months....at least! However, this doctor was talking 1 or 2 months. SHIT!!! Again!!
Hospital stay
They literally took me straight from the room I was having my appointment in straight up to a ward and the tests and poking and prodding started.
The only way to relieve the pressure from my heart was to drain the fluid manually. This is a horrible procedure that I was awake through and it hurt like hell and I thought I was going to die! If it was not for an angel of a nurse that was there for me after the procedure I think I wouldhave given up then and there......seriously.
They took off 550ml of fluid, that's a lot I would think given your heart isn't really that big in the scheme of things!!
Anyway, it took about 24 hours to get that pain under control and I was moved back to the oncology ward.
I have been here ever since....they are trying to get my pain relief right before I go home. Unfortunately, because the cough is so bad, (caused by the tumours in my lungs), everything hurts. I am living on pain killers and nebulisers amazing how fast things deteriorate.....
Today I had my first cycle of chemo. While there is not much hope that this chemo drug will actually do anything as far as stalling the cancer goes, it is the only option they have and I have to have tried a different chemo before I am allowed to go on the trial drug with the b-raf gene.
So hopefully, I will be out of here soon, maybe Friday, with enough pain meds to let me have some play time with my boys, and with a positive result on this b-raf gene and then I can be on the road to getting rid of this horrible disease out of my body once and for all!
I have many questions, but the most prevalent one at the moment is how can I be planning buying a camper trailer for our family holidays for the next 15 years and 3 weeks later be planning my funeral? It just doesn't make sense............
I am a little bit of my face at the moment with all the drugs and a bit sleepy, so I will probably read this tomorrow and go, "oh my God, what was I thinking". Hope it has brought you up to date on where we are medically. I am sure I have left out lots, but I can always pick it up on another day!
My motto........NEVER, NEVER, NEVER GIVE UP!
xxx
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