It's finally happened. We are suffering from computer issues.
We got a guy in last week to fix up both the laptop and the desktop and while he was here he connected up our new optus broadband. Now the computers work really well, but the internet is stuffed! It's like it doesn't work when the phones are plugged in but if we unplug them it's fine. What's doing with that! Anyway, we will have to call Optus tomorrow and see if we can figure out how to fix it. So that's why I haven't written for a while. No internet connection!
We are having family portraits done tomorrow so looking forward to that. We bought plain white tees for the boys so we can all be matching and then light blue ones for them to have shots done of just them. They should be good, a friend of Jason's from high school has offered to do them for us so we are quite excited. Also, they are doing my hair and make-up beforehand so I shouldn't look like a complete drip!!
Speaking of hair and makeup, I went to the MPA support group on Thursday night and the RPA film crew were there for Jay like we had been warned. They did a one on one interview with me so I got my 15 secs of fame, but of course I was looking very Judy. Trackies, t-shirt, jacket no make-up and hair pulled back in a pony tail. Just how you want to look on national TV!! Not that it really matters, they probably won't show it anyway and if they do I expect it will be incredibly short and only shoulders up so my trackies won't get a start!
We took Matt to the bereavement counsellor on Thursday too. That went really well. We were there for 2 hours but it flew. Matt didn't want to leave and can't wait to go back. We were thinking, when are they going to start counselling him, we've been here for nearly 2 hours and all they have done is played. Of course, we then found out that the play was the therapy and the counsellor found out all he needed to know in that time. The encouraging news was that Matt is behaving very normally for a 5 year old dealing with the loss of a parent. Apparently, we are doing something right because he doing all the right things as far as the stages he moves through. He talked about how Matt is already starting to exclude me from situations getting ready for my abscence and while that seems terrible and is sad for me, it is something he needs to do to be able to cope when I do go. He is still affectionate and loves me he is just cutting me out of future events in his mind. Which is pretty clever really. He also explained how they build memories of the parents with the kids. They will ask a question like, "How did your Mum feel when she had you?" The child will say, I don't know so the counsellor will then ask the Dad the question in front of the child. Apparently, children retain more when they are eavesdropping, so the memory of how Mum felt at their birth is born! Pretty amazing hey.
I think that's about it for now, oh don't forget to RSVP to Paul for the Glenmore trivia night next weekend if you are going. I think the RSVP is by today so technically you may have already missed out!!
Till next time xxxx
NEVER, NEVER, NEVER GIVE UP!
Saturday, October 17, 2009
Wednesday, October 14, 2009
It's been a while....
Sorry I haven't written for ages...a combination of feeling pretty crappy and being tired!
I don't really have that much to report except for a massive scare on Sunday morning. I had had a pretty terrible night. Starting from about 2am I was really restless and started feeling pretty ordinary. As the morning went on, I was feeling worse and worse until by 6am, I was feeling REALLY bad. I can't really describe it.......everything hurt, I felt terribly ill, I couldn't breathe properly, my chest was tight and I was coughing heaps. Needless to say I was in tears, and I had said to Jason, "I think this might be it. I might be going." We decided not to call an ambulance because my wish is to die at home and unless it became unbearable I wanted to stay there. He asked what drugs I wanted and I couldn't answer because there was so much wrong I didn't know where to start! He went to get some breakthrough pain relief and when he got back he said, "Have you checked your pump?" When I looked at it it had stopped! It hadn't been going since about 8pm! No wonder I felt crap!!!!
I had now been completely drug free for about 8 hours. The good thing was I had an explanation for why I was feeling so bad, but it was a bit of a shock how bad I would be feeling if I didn't have the drugs. Another one of those slaps in the face to remind me how sick I really am.
It took a few hours to get the levels back up and for me to be comfortable again, but I check my pump constantly now.
Nothing terribly interesting has happened since then. As I said, I've been feeling pretty crappy. I have had nausea and been really fatigued. So all I want to do is sleep. I am confident that's a side effect of the chemo.
I saw the Palliative care Dr again today. He hasn't changed any medication but was able to ascertain that one of my new pains is probably coming from a tumour in my lung irritating the pleura. Why don't they just go away. The tumours that is!
It's our 9th wedding anniversary next Wednesday night so I booked at the Quay Grand Suites again. With the kids again, because they really make it worthwhile. I thought maybe we could have lunch at Wildfire and then check-in. We'll see.....
We are going to Macquarie Park Crematorium tomorrow to pick our spots. I know it seems a bit morbid, but it's less for Jason to do when the time comes, and if I do beat this, I am still going to die one day!
Oh, RPA re doing a "Where are they now?" show and Jay is having them film an MPA meeting tomorrow night. Great coverage for MPA, and I love anything that gets the melanoma message out there. Hopefully I can make it, as long as this nausea keeps away. I'll be the chick up the back dozing!!!
Anyway, until next time xxxx
NEVER, NEVER, NEVER GIVE UP!
I don't really have that much to report except for a massive scare on Sunday morning. I had had a pretty terrible night. Starting from about 2am I was really restless and started feeling pretty ordinary. As the morning went on, I was feeling worse and worse until by 6am, I was feeling REALLY bad. I can't really describe it.......everything hurt, I felt terribly ill, I couldn't breathe properly, my chest was tight and I was coughing heaps. Needless to say I was in tears, and I had said to Jason, "I think this might be it. I might be going." We decided not to call an ambulance because my wish is to die at home and unless it became unbearable I wanted to stay there. He asked what drugs I wanted and I couldn't answer because there was so much wrong I didn't know where to start! He went to get some breakthrough pain relief and when he got back he said, "Have you checked your pump?" When I looked at it it had stopped! It hadn't been going since about 8pm! No wonder I felt crap!!!!
I had now been completely drug free for about 8 hours. The good thing was I had an explanation for why I was feeling so bad, but it was a bit of a shock how bad I would be feeling if I didn't have the drugs. Another one of those slaps in the face to remind me how sick I really am.
It took a few hours to get the levels back up and for me to be comfortable again, but I check my pump constantly now.
Nothing terribly interesting has happened since then. As I said, I've been feeling pretty crappy. I have had nausea and been really fatigued. So all I want to do is sleep. I am confident that's a side effect of the chemo.
I saw the Palliative care Dr again today. He hasn't changed any medication but was able to ascertain that one of my new pains is probably coming from a tumour in my lung irritating the pleura. Why don't they just go away. The tumours that is!
It's our 9th wedding anniversary next Wednesday night so I booked at the Quay Grand Suites again. With the kids again, because they really make it worthwhile. I thought maybe we could have lunch at Wildfire and then check-in. We'll see.....
We are going to Macquarie Park Crematorium tomorrow to pick our spots. I know it seems a bit morbid, but it's less for Jason to do when the time comes, and if I do beat this, I am still going to die one day!
Oh, RPA re doing a "Where are they now?" show and Jay is having them film an MPA meeting tomorrow night. Great coverage for MPA, and I love anything that gets the melanoma message out there. Hopefully I can make it, as long as this nausea keeps away. I'll be the chick up the back dozing!!!
Anyway, until next time xxxx
NEVER, NEVER, NEVER GIVE UP!
Saturday, October 10, 2009
What a night!
Wow, what a fantastic night last night turned out to be.
I think everyone underestimated the crowd both in size and generosity. 240 people turned up, and people had to be turned away. They raised $30,000 for us. How amazing is that! It will certainly help to pay the bills over the coming months.
The night was a success in every sense of the word. It was great fun, and I think everyone else enjoyed themselves. I can't believe I actually managed to stay until the end. Given I was questioning whether to go or not in the first place, and then at halfway was seriously contemplating going home. I had said to Jason, "I think I'm done, just give me five more minutes and then we'll go".
Somewhere in that 5 minutes I got my second wind and managed to kick on through until the end.
It was great to catch up with family and friends that I hadn't seen in such a long time. To see family like Nikki and Andrew who made the huge trek down from the border just to come along and school friends that I hadn't seen in at least 15 years. It was wonderful.
I want to thank everybody again who came along last night and those that didn't but donated prizes and/or money. We have been completely overwhelmed by the love and support we have received. While the money side of things is something we try not to dwell on, the efforts of everyone involved last night will certainly make facing the bills a little easier.
While I know that there were a lot of people involved in bringing last night together, I want to make particular mention of my incredible sister-in-law Sharon, whose tireless efforts really showed in how much of a success last night really was. You are a champion. Scott and Jeff too of course, but Sharon is the chief organiser.
On a health point, I went to pick up my new heart drugs from the hospital today. They just had to check my blood pressure before they gave them to me because they may lower it substantially. I don't know, I have drugs to make things go up, go down, come out, stay in......it's neverending lol!
While at the hospital, I ran into one of the cardiologists that treated me when I was in last time. I couldn't believe she remembered me, but she said that every now and then you get a case that you rememeber and it sticks with you. Mine was one of those. Made me feel a little special I must say. She probably didn't mean much by it but it made my day!
Well, I have spent most of the day recovering today, I am still exhausted!!!! I am off to bed now and it's only 8pm.
Take care and until next time
NEVER, NEVER, NEVER GIVE UP
I think everyone underestimated the crowd both in size and generosity. 240 people turned up, and people had to be turned away. They raised $30,000 for us. How amazing is that! It will certainly help to pay the bills over the coming months.
The night was a success in every sense of the word. It was great fun, and I think everyone else enjoyed themselves. I can't believe I actually managed to stay until the end. Given I was questioning whether to go or not in the first place, and then at halfway was seriously contemplating going home. I had said to Jason, "I think I'm done, just give me five more minutes and then we'll go".
Somewhere in that 5 minutes I got my second wind and managed to kick on through until the end.
It was great to catch up with family and friends that I hadn't seen in such a long time. To see family like Nikki and Andrew who made the huge trek down from the border just to come along and school friends that I hadn't seen in at least 15 years. It was wonderful.
I want to thank everybody again who came along last night and those that didn't but donated prizes and/or money. We have been completely overwhelmed by the love and support we have received. While the money side of things is something we try not to dwell on, the efforts of everyone involved last night will certainly make facing the bills a little easier.
While I know that there were a lot of people involved in bringing last night together, I want to make particular mention of my incredible sister-in-law Sharon, whose tireless efforts really showed in how much of a success last night really was. You are a champion. Scott and Jeff too of course, but Sharon is the chief organiser.
On a health point, I went to pick up my new heart drugs from the hospital today. They just had to check my blood pressure before they gave them to me because they may lower it substantially. I don't know, I have drugs to make things go up, go down, come out, stay in......it's neverending lol!
While at the hospital, I ran into one of the cardiologists that treated me when I was in last time. I couldn't believe she remembered me, but she said that every now and then you get a case that you rememeber and it sticks with you. Mine was one of those. Made me feel a little special I must say. She probably didn't mean much by it but it made my day!
Well, I have spent most of the day recovering today, I am still exhausted!!!! I am off to bed now and it's only 8pm.
Take care and until next time
NEVER, NEVER, NEVER GIVE UP
Wednesday, October 7, 2009
Crowdy Head
Well we arrived last night at about 6pm after the most monumental carpacking ever! 3 adults, 2 kids and a baby plus all the paraphenalia that goes along with them managed to fit in the Territory with a box on the roof. Pretty impressive, hey! Yet another reason I married Jason, he's good at packing!!!!
The place is everything I remembered and more, and the weather today was stunning so spent the afternoon at the beach. It seems though I have somehow lost my ability to stay upright. I fell over twice in a matter of 5 minutes. Very funny to watch I am sure, after getting over the initial concern of whether I had collapsed or tripped. The very loud laughing coming from the crumpled heap on the sand gave it away!
I was almost a bigger star than the local rag tonight. I think I told you the local paper did a story on me. Well it came out yesterday with the headline "Mum warns of solarium use" or something similar. It seems ACA were doing a story tonight on Solariums and how one guy (who I know through our support group) is going to sue for his melanoma. They wanted to get my story as well. Because I am not feeling that flash, nausea caught up with me again from Friday's chemo, and we are away at the moment I declined but I said I would be happy to do a follow up or they could do something on my current battle with the insurance company....snakes, down the track.
Anyway, the story didn't air tonight so I don't know what happened.
Got some more bad news today. Another one of my heart function tests came back and not only do I have atrial fibrualation (sp.) but also some other form of funny rhythm so they want to put me on a drug that may help it. It would be really nice to get some good news for a change wouldn't it!
I think that's it for now, hopefully we don't get blown away, it's really windy here tonight.
NEVER, NEVER, NEVER GIVE UP! xxx
The place is everything I remembered and more, and the weather today was stunning so spent the afternoon at the beach. It seems though I have somehow lost my ability to stay upright. I fell over twice in a matter of 5 minutes. Very funny to watch I am sure, after getting over the initial concern of whether I had collapsed or tripped. The very loud laughing coming from the crumpled heap on the sand gave it away!
I was almost a bigger star than the local rag tonight. I think I told you the local paper did a story on me. Well it came out yesterday with the headline "Mum warns of solarium use" or something similar. It seems ACA were doing a story tonight on Solariums and how one guy (who I know through our support group) is going to sue for his melanoma. They wanted to get my story as well. Because I am not feeling that flash, nausea caught up with me again from Friday's chemo, and we are away at the moment I declined but I said I would be happy to do a follow up or they could do something on my current battle with the insurance company....snakes, down the track.
Anyway, the story didn't air tonight so I don't know what happened.
Got some more bad news today. Another one of my heart function tests came back and not only do I have atrial fibrualation (sp.) but also some other form of funny rhythm so they want to put me on a drug that may help it. It would be really nice to get some good news for a change wouldn't it!
I think that's it for now, hopefully we don't get blown away, it's really windy here tonight.
NEVER, NEVER, NEVER GIVE UP! xxx
Monday, October 5, 2009
Holiday!
Well, I don't want to get too excited until we actually get there but we are going away tomorrow for a few days!
Not quite the original Mooloolaba resort holiday we had to cancel but looking forward to a great time away with the boys none the less. We are staying at the house of a friend of Sharon's (my sister in law) at Crowdy Head, which is just between Taree and Port Macquarie.
The house itself is lovely but it has 180 degree water views of both the beach and harbour, absolutely glorious.
They can organise for community nursing up there to come and care for me and change my pump every day so it will be just like being at home as far as that goes. Isn't it great how they can organise things to help you out? And at such short notice too. I only asked today and we want to go tomorrow at lunch time. They will teach Jason how to do everything just in case something goes wrong and nobody turns up. He is becoming a very good nurse...hehehe!
There are no tests or appointments this week so we thought we would take the doctors advice and "do the things we want to do as a family". I am really looking forward to it.
Matt is right into his new book "Kemo shark". Scott and Sharon came over this afternoon and he showed them how you draw the cancer and then blast it and throw it in the bin. I guess it's his way of feeling like he is doing something to help. He keeps making me 'medicine' to take to make me better. Maybe he will grow up and find the cure for Melanoma. Wouldn't that be fantastic!
Well, we need to start writing lists of things to take on holidays, need to be triply organised with a baby and all my medications. I may not get a chance to write while we are away so I will see you on Friday night assuming my health holds up! xxx
NEVER, NEVER, NEVER GIVE UP!
Not quite the original Mooloolaba resort holiday we had to cancel but looking forward to a great time away with the boys none the less. We are staying at the house of a friend of Sharon's (my sister in law) at Crowdy Head, which is just between Taree and Port Macquarie.
The house itself is lovely but it has 180 degree water views of both the beach and harbour, absolutely glorious.
They can organise for community nursing up there to come and care for me and change my pump every day so it will be just like being at home as far as that goes. Isn't it great how they can organise things to help you out? And at such short notice too. I only asked today and we want to go tomorrow at lunch time. They will teach Jason how to do everything just in case something goes wrong and nobody turns up. He is becoming a very good nurse...hehehe!
There are no tests or appointments this week so we thought we would take the doctors advice and "do the things we want to do as a family". I am really looking forward to it.
Matt is right into his new book "Kemo shark". Scott and Sharon came over this afternoon and he showed them how you draw the cancer and then blast it and throw it in the bin. I guess it's his way of feeling like he is doing something to help. He keeps making me 'medicine' to take to make me better. Maybe he will grow up and find the cure for Melanoma. Wouldn't that be fantastic!
Well, we need to start writing lists of things to take on holidays, need to be triply organised with a baby and all my medications. I may not get a chance to write while we are away so I will see you on Friday night assuming my health holds up! xxx
NEVER, NEVER, NEVER GIVE UP!
Saturday, October 3, 2009
Just a quickie.....
I am writing tonight from a King size bed overlooking the most beautiful harbour in the world! Geez, some have it tough don't they!
We are staying at the Quay Grand Apartments on Macquarie St in Circular Quay. Not for any particular reason other than to make our own "high".
The boys were so excited...they spent the first 2 hours staring out the windows at the ferries and the trains and of course the bridge. It has been worth it just for that.
We had dinner with Jason's parents tonight too. They came up to the room and we ordered in. It was a lovely evening, very enjoyable. I picked the right night to get some form of appetite back, a very yummy t-bone steak possibly aided that!
Nothing else really to report. My health is much the same, cough driving me crazy but the pain is worsening so I'm not real happy about that one.
Until next time xxxx
NEVER, NEVER, NEVER GIVE UP
We are staying at the Quay Grand Apartments on Macquarie St in Circular Quay. Not for any particular reason other than to make our own "high".
The boys were so excited...they spent the first 2 hours staring out the windows at the ferries and the trains and of course the bridge. It has been worth it just for that.
We had dinner with Jason's parents tonight too. They came up to the room and we ordered in. It was a lovely evening, very enjoyable. I picked the right night to get some form of appetite back, a very yummy t-bone steak possibly aided that!
Nothing else really to report. My health is much the same, cough driving me crazy but the pain is worsening so I'm not real happy about that one.
Until next time xxxx
NEVER, NEVER, NEVER GIVE UP
Friday, October 2, 2009
Mmmmm.....
Don't quite know how to start this one. I have a lot to say, but don't know where to begin....
Perhaps the facts first...
I have missed out on the b-raf trial. The disease in my heart makes putting me on the trial too risky. BUGGER!
So now, medically, my options are slim. Best case scenario is have another 2 rounds of DTIC/Dicarbizane/Chemo whatever the hell you want to call it, and the tumours in my heart shrink after both rounds. Then they can put me forward again for the trial. Given that the disease progressed so much after the first round nobody is holding out too much hope for this one.
Possible, (and quite likely), scenario is that the chemo will do nothing which leaves me with weeks to live, and that could be days to weeks based on the volatility of my heart. Apparently it is quite rare to get cancer in your heart. Of course it happens, but not often. Thank God I have a very experienced oncologist because he is the only one who has seen it before. All the other doctors and nurses have not been exposed to it before. I am SPECIAL!!!
The scenario I am aiming for right now is that the 2nd round of chemo shows slowing in the progression of the disease. This will convert the weeks into months, and we can reassess after each treatment weighing up quality of life, time and side effects.
If I can at least slow the progression it gives me more time to get stronger and fight this beast. I figure that's my best option at the moment.
Until I know for sure that I can't get onto the trial, I won't explore alternative treatments further than I am already with juicing, meditation and apricot kernals because I don't want to jeapordise my chances of getting on the trial because clearly that is my best chance of survival.
Obviously, I made the decision to try a 2nd cycle of chemo....what do I have to lose?? I had that this afternoon so now I am back on the emotional and side effect roller coaster again. History has shown the more rounds you have apparently the worse the side effects hit you so brace yourselves for some whinging. I am the biggest sook you will ever come across in your life.
They had to stop and start my chemo infusion 5 times this arvo because it was stinging so badly. In the end they had to move the cannular completely to a new vein that was bigger and could take the drugs!! Such a woos I am. I daren't say it today in the nurses presence based on her reaction last time.
Anyway, there are the facts, with just a bit of my opinion mixed in.
I am sorry, if like me, you were looking for some good news....sadly it hasn't been forthcoming. Jason and I are just beside ourselves. It seems silly, but we have been trying so hard not to hear the prognosis, all the bad scans and opinions have really knocked us for six. I actually expected things to be better! HA!
As you would expect, I am not in the greatest of spirits today, at the bottom of the dip in the roller coaster you could say. And when my angel of a little boy says to me with tears in his eyes, "Mummy I don't want you to die, I want to be able to hug and kiss you properly like now", I wonder to myself where the rhyme and reason in this whole completely screwed up situation is. WHY????? How can you hurt him so much? Poor little Matty, he is doing it really tough.
Jason, Matt, Andy and I each drew the cancer tonight and blasted it and tore up the bits of paper to toss them in the bin. It is an activity that was suggested to help them deal with what is going on. Matt drew my heart with the cancer in it......pretty switched on for a 5 year old hey!
It seemed to work. We were all booming and tearing and laughing in the end.
I just want to send a little thought to the Mum's reading this....do treasure every moment you have with your kids. Man, we know how quickly they grow up, but when you think one day you are going along living your life (the camper trailer) and the next day it all gets taken away. It's scary. It's certainly hard to treasure every moment of them all the time, but even the crappy times are good, at least you are together and communicating (just maybe not too well!) Off my soapbox now.
Well, bed time...the morphine is really kicking in especially as I didn't get my nanna nap this arvo!
Sorry for the bad news and take care xxxx
NEVER, NEVER, NEVER GIVE UP
Perhaps the facts first...
I have missed out on the b-raf trial. The disease in my heart makes putting me on the trial too risky. BUGGER!
So now, medically, my options are slim. Best case scenario is have another 2 rounds of DTIC/Dicarbizane/Chemo whatever the hell you want to call it, and the tumours in my heart shrink after both rounds. Then they can put me forward again for the trial. Given that the disease progressed so much after the first round nobody is holding out too much hope for this one.
Possible, (and quite likely), scenario is that the chemo will do nothing which leaves me with weeks to live, and that could be days to weeks based on the volatility of my heart. Apparently it is quite rare to get cancer in your heart. Of course it happens, but not often. Thank God I have a very experienced oncologist because he is the only one who has seen it before. All the other doctors and nurses have not been exposed to it before. I am SPECIAL!!!
The scenario I am aiming for right now is that the 2nd round of chemo shows slowing in the progression of the disease. This will convert the weeks into months, and we can reassess after each treatment weighing up quality of life, time and side effects.
If I can at least slow the progression it gives me more time to get stronger and fight this beast. I figure that's my best option at the moment.
Until I know for sure that I can't get onto the trial, I won't explore alternative treatments further than I am already with juicing, meditation and apricot kernals because I don't want to jeapordise my chances of getting on the trial because clearly that is my best chance of survival.
Obviously, I made the decision to try a 2nd cycle of chemo....what do I have to lose?? I had that this afternoon so now I am back on the emotional and side effect roller coaster again. History has shown the more rounds you have apparently the worse the side effects hit you so brace yourselves for some whinging. I am the biggest sook you will ever come across in your life.
They had to stop and start my chemo infusion 5 times this arvo because it was stinging so badly. In the end they had to move the cannular completely to a new vein that was bigger and could take the drugs!! Such a woos I am. I daren't say it today in the nurses presence based on her reaction last time.
Anyway, there are the facts, with just a bit of my opinion mixed in.
I am sorry, if like me, you were looking for some good news....sadly it hasn't been forthcoming. Jason and I are just beside ourselves. It seems silly, but we have been trying so hard not to hear the prognosis, all the bad scans and opinions have really knocked us for six. I actually expected things to be better! HA!
As you would expect, I am not in the greatest of spirits today, at the bottom of the dip in the roller coaster you could say. And when my angel of a little boy says to me with tears in his eyes, "Mummy I don't want you to die, I want to be able to hug and kiss you properly like now", I wonder to myself where the rhyme and reason in this whole completely screwed up situation is. WHY????? How can you hurt him so much? Poor little Matty, he is doing it really tough.
Jason, Matt, Andy and I each drew the cancer tonight and blasted it and tore up the bits of paper to toss them in the bin. It is an activity that was suggested to help them deal with what is going on. Matt drew my heart with the cancer in it......pretty switched on for a 5 year old hey!
It seemed to work. We were all booming and tearing and laughing in the end.
I just want to send a little thought to the Mum's reading this....do treasure every moment you have with your kids. Man, we know how quickly they grow up, but when you think one day you are going along living your life (the camper trailer) and the next day it all gets taken away. It's scary. It's certainly hard to treasure every moment of them all the time, but even the crappy times are good, at least you are together and communicating (just maybe not too well!) Off my soapbox now.
Well, bed time...the morphine is really kicking in especially as I didn't get my nanna nap this arvo!
Sorry for the bad news and take care xxxx
NEVER, NEVER, NEVER GIVE UP
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