Sunday's baptism was lovely. The boys were well behaved and it is always nice to get the family together, but then came Monday morning!
You see I have this terrible problem at the moment that I think I have spoken about recently....I like to think that I am completely well. I am lucky that the drugs I take help this illusion, but that is all it is.....an illusion, but unfortunately I am able to treat my body as though it's real so it suffers the consequences. Hence the Monday morning crash!! I actually haven't been right all day and I am struggling already and it's only 8:30pm!
My nurse actually got cranky with me today for doing too much yesterday. She says she hates to do it, but someone needs to ground me as I will pick the smallest amount of energy and I am running it until it's destroyed. Not only destroying any potential future energy and health but destroying what I have at the moment. I have to remember that I am sick, and I MUST rest to beat this thing. She actually put it very well....she said that every moment I am fighting sleep, I am using energy that should be fighting the disease. I don't mean to be a bad patient, it just is all a bit surreal still, and now even more so.....I wasn't supposed to be here.......that's a really weird feeling. I don't know how to explain it, but it's like I am cheating death, somehow doing the wrong thing....anyway, I can't put it better than that so I'll leave it there and hope that you will understand what I am trying to say.
My nurse's job is to keep my quality of life good and make sure I am looking after myself, unfortunately that sometimes means she needs to say stuff I don't want to hear like it's OK to be thinking I will get to Christmas with no hiccoughs but that expecting to get to moving day, which is 9 weeks without anything going wrong may be a little too optimistic. Things can change in a heartbeat, and as my doctors said at the last scan results it can all turn bad in a heartbeat. They aren't being negative, they have seen it happen lots of times. People stop taking care of themselves and they don't want me to do that!
So I will make sure I take more care, and rest everyday and remember I am not super woman and that I am still sick.
Well, I'm off to sleep now, for some well earned rest! xxx
NEVER, NEVER, NEVER GIVE UP!!!
Monday, November 30, 2009
Thursday, November 26, 2009
You have to wonder
Firstly, at my stupidity! Secondly, at other's incompetence!
I will start with my stupidity.......it should come as no shock that the multitude of medication I take keeps me feeling pretty good, well relatively speaking anyway. It is important now that I take tablets rather than have my trusty pump that I take my drugs at the correct time every day to ensure the consistency of treatment. While I know this, I seem to struggle to hit the right times every day but last night I hit a new high of stupidity! I didn't take my tablets at all!!! I completely forgot! Needless to say, I feel like a truck has hit me this morning and will probably take the whole day to get back to normal again. The drugs are slow release so they take 4 hours after taking them to do anything at all. I was supposed to take them at 7pm but realised this morning a 7am I had missed them as I took my morning dose, so I missed a whole dose and of course by 7am there is nothing left in my system so it explains the sweaty, miserable in pain lump of person I have been over night and this morning. What a goose! Hopefully, won't be stupid enough to make that mistake again, bad memories can cause all sorts of issues!
Now for the incompetence.....BANKS!!!!! As you also now, we are in the process of buying a house, we had to extend the cooling off period last week because at the last minute the bank decided they need to do a valuation on the house. Why, I don't know but maybe they want to feel like they are doing something useful. Anyway, we requested an extension in the cooling off period and the vendors allowed however they wanted to extend settlement by the same amount, which doesn't work because we will be past the lease and we would have to live in a motel with all our stuff in storage until settlement date! Anyway, the bank have had a week to organise and finalise the valuation. But as of yesterday afternoon, they still had not even received the valuation report let alone started evaluating it for final approval. It seems they didn't book the valuation until Tuesday this week so the company didn't do it until 10:30am Wednesday. As far as the valuers are concerned they have 3 days to get the report to the bank so they aren't rushing to get it in. Hence, we are on the last day of cooling off and still have no loan approval from the bank. It seems that the hold up with the whole thing is that the documentation was marked for approval in principle not unconditional approval so they didn't realise there was any urgency. The most ridiculous thing is that we got conditional approval last week and as I said I really don't see the issue with the valuation. Sadly, can't put brains in statues and there isn't a thing we can do about it. Let's just hope that when we go back and ask for a further extension the vendors don't say no and we lose our deposit as well as the house. I am so angry with the bank. It's NAB by the way, so I would strongly advise against usng them for a home loan based on their incompetence in this case, I knew we should have stayed with St George!!! Bugger! The only reason we changed was the package was slightly cheaper and the rate was slightly lower, so silly now. And of course it's way too late to change banks now!
On a completely different note, Matt's gradution was gorgeous. I cried of course, and he was completely oblivious to the significance of the occasion! Kids are amazing aren't they.I feel a bit sad too that he won't know anyone at his new school. There were a whole list of kids going from his kindy to West Pennant Hills Public, but of course none for Kellyville Public. I just think about how much I hate going to new things when I don't know anyone and how tough it is for little kids these days.........of well, I'm sure he will be fine, and hopefully won't take long to make some new friends.
Well, that's my whinge for today, I think I covered the major points fairly thoroughly!
NEVER, NEVER, NEVER GIVE UP!
I will start with my stupidity.......it should come as no shock that the multitude of medication I take keeps me feeling pretty good, well relatively speaking anyway. It is important now that I take tablets rather than have my trusty pump that I take my drugs at the correct time every day to ensure the consistency of treatment. While I know this, I seem to struggle to hit the right times every day but last night I hit a new high of stupidity! I didn't take my tablets at all!!! I completely forgot! Needless to say, I feel like a truck has hit me this morning and will probably take the whole day to get back to normal again. The drugs are slow release so they take 4 hours after taking them to do anything at all. I was supposed to take them at 7pm but realised this morning a 7am I had missed them as I took my morning dose, so I missed a whole dose and of course by 7am there is nothing left in my system so it explains the sweaty, miserable in pain lump of person I have been over night and this morning. What a goose! Hopefully, won't be stupid enough to make that mistake again, bad memories can cause all sorts of issues!
Now for the incompetence.....BANKS!!!!! As you also now, we are in the process of buying a house, we had to extend the cooling off period last week because at the last minute the bank decided they need to do a valuation on the house. Why, I don't know but maybe they want to feel like they are doing something useful. Anyway, we requested an extension in the cooling off period and the vendors allowed however they wanted to extend settlement by the same amount, which doesn't work because we will be past the lease and we would have to live in a motel with all our stuff in storage until settlement date! Anyway, the bank have had a week to organise and finalise the valuation. But as of yesterday afternoon, they still had not even received the valuation report let alone started evaluating it for final approval. It seems they didn't book the valuation until Tuesday this week so the company didn't do it until 10:30am Wednesday. As far as the valuers are concerned they have 3 days to get the report to the bank so they aren't rushing to get it in. Hence, we are on the last day of cooling off and still have no loan approval from the bank. It seems that the hold up with the whole thing is that the documentation was marked for approval in principle not unconditional approval so they didn't realise there was any urgency. The most ridiculous thing is that we got conditional approval last week and as I said I really don't see the issue with the valuation. Sadly, can't put brains in statues and there isn't a thing we can do about it. Let's just hope that when we go back and ask for a further extension the vendors don't say no and we lose our deposit as well as the house. I am so angry with the bank. It's NAB by the way, so I would strongly advise against usng them for a home loan based on their incompetence in this case, I knew we should have stayed with St George!!! Bugger! The only reason we changed was the package was slightly cheaper and the rate was slightly lower, so silly now. And of course it's way too late to change banks now!
On a completely different note, Matt's gradution was gorgeous. I cried of course, and he was completely oblivious to the significance of the occasion! Kids are amazing aren't they.I feel a bit sad too that he won't know anyone at his new school. There were a whole list of kids going from his kindy to West Pennant Hills Public, but of course none for Kellyville Public. I just think about how much I hate going to new things when I don't know anyone and how tough it is for little kids these days.........of well, I'm sure he will be fine, and hopefully won't take long to make some new friends.
Well, that's my whinge for today, I think I covered the major points fairly thoroughly!
NEVER, NEVER, NEVER GIVE UP!
Wednesday, November 25, 2009
A real quickie...
Just a very quick note to let you know that I got a phone call yesterday that the have approved the oral chemo drug. Hooray, no more infusions!
I will probably start on it in a couple of weeks but I am happy it's finally been given the OK. They approved 3 rounds as well so that's pretty good apparently.
Anyway, just wanted to update you on the very latest, we are getting ready for Matt's graduation from Kindy this morning....how sad, my baby boy growing up!
Until next time xx
NEVER, NEVER, NEVER GIVE UP!
I will probably start on it in a couple of weeks but I am happy it's finally been given the OK. They approved 3 rounds as well so that's pretty good apparently.
Anyway, just wanted to update you on the very latest, we are getting ready for Matt's graduation from Kindy this morning....how sad, my baby boy growing up!
Until next time xx
NEVER, NEVER, NEVER GIVE UP!
Tuesday, November 24, 2009
Latest news......
Well, I had my appointment yesterday with the Medical Oncology team. I can't believe I was the only person there but they were still running really late!
Anyway, no news yet on the oral chemo drug. It seems it's a good thing that they are thinking about it, apparently the alternative is a flat out no so I am pleased to have avoided that one. The thought of going through another infusion really doesn't appeal at all! They did book me in for another "Just in case" I change my mind about the infusion and decide to go ahead now. Not bloody likely I don't think. They also discussed a porta cath wih me. That's were they put a permanent line in so each time they aren't poking around looking for a vein. They put it in your chest and it is a procedure with stitches to get it in, but once it's in it's done for good I think. There are a few risks involved in having the porta cath inserted but hopefully I won't have to worry as that oral medication will be approved.
The doctors were really happy with my scan results. They are not worried about the bone mets yet as they are not causing me any grief. Apparently, they will only do something if there is pain or if it's in one of the long bones because there is a risk of breakage as the cancer eats away at it.
On a totally different topic, thanks for the caravan park recommendations Bec. We will be staying at Blue Lagoon not this weekend but the weekend after. I am really looking forward to it all ready. It can't be as bad as Toowon Bay and we couldn't be unlucky enough to have noisy horrible patrons again I'm sure. The park looks a lot smaller so it should work out well.
We are also looking for a new Au Pair at the moment. It's taking a little longer than it did the first time around. They are all hiding out!! Maybe they have heard about us now!
Well that's about it for now.
NEVER, NEVER, NEVER GIVE UP!
Anyway, no news yet on the oral chemo drug. It seems it's a good thing that they are thinking about it, apparently the alternative is a flat out no so I am pleased to have avoided that one. The thought of going through another infusion really doesn't appeal at all! They did book me in for another "Just in case" I change my mind about the infusion and decide to go ahead now. Not bloody likely I don't think. They also discussed a porta cath wih me. That's were they put a permanent line in so each time they aren't poking around looking for a vein. They put it in your chest and it is a procedure with stitches to get it in, but once it's in it's done for good I think. There are a few risks involved in having the porta cath inserted but hopefully I won't have to worry as that oral medication will be approved.
The doctors were really happy with my scan results. They are not worried about the bone mets yet as they are not causing me any grief. Apparently, they will only do something if there is pain or if it's in one of the long bones because there is a risk of breakage as the cancer eats away at it.
On a totally different topic, thanks for the caravan park recommendations Bec. We will be staying at Blue Lagoon not this weekend but the weekend after. I am really looking forward to it all ready. It can't be as bad as Toowon Bay and we couldn't be unlucky enough to have noisy horrible patrons again I'm sure. The park looks a lot smaller so it should work out well.
We are also looking for a new Au Pair at the moment. It's taking a little longer than it did the first time around. They are all hiding out!! Maybe they have heard about us now!
Well that's about it for now.
NEVER, NEVER, NEVER GIVE UP!
Saturday, November 21, 2009
We survived....just!!
What a laugh....or cry whichever way you choose to look at it! I would rather laugh myself. What started out as an absolute disaster ended up kind of OK in the end.
On arrival at Toowoon Bay caravan park it started raining. This we could cope with. Even for a couple of novice campers like ourselves we managed to contain the kids and set up the camper trailer. Where we made our mistake was we decided we would put up the awning even though the wind had picked up and what was just a bit of rain was quickly turning into a bit of a nasty storm. We got the poles up but hadn't got the ropes on when an enormous gust of wind blew up the whole awning and flipped it over the roof of the caravan.
The result was 3 snapped poles....2 from the roof and one of the upright poles, and one of the velco attachments torn. Needless to say, we were unable to use the awning for the remainder of the weekend. On the upside, the poles are replacable and on special at the moment. We picked the right month to break the poles! And better still the awning roof has no holes, how lucky is that?!
Once over the initial disaster, things got a little better except there were a couple of rowdy groups that the park management failed to keep in check. So both Friday and Saturday nights saw loud chatting and music until well past 2am. Not happy Jan! I know not all parks are like that, so we won't be gracing Toowoon Bay again soon, or maybe even ever.
A very different experience that's for sure. We are used to individual accommodation, not shared amenities, quiet nights and a little more luxury! I could certainly get used to it though, minus the noisy neighbours. I can't believe how rude some people are.....
Jason's reversing of the trailer was perfect, nothing to be nervous about at all!
Well that's it for now, any recommendations for nice quiet well managed parks would be appreciated for our next weekend away. Maybe a place with ensuite sites?
Anyway, take care until next time.
NEVER, NEVER, NEVER GIVE UP!!
On arrival at Toowoon Bay caravan park it started raining. This we could cope with. Even for a couple of novice campers like ourselves we managed to contain the kids and set up the camper trailer. Where we made our mistake was we decided we would put up the awning even though the wind had picked up and what was just a bit of rain was quickly turning into a bit of a nasty storm. We got the poles up but hadn't got the ropes on when an enormous gust of wind blew up the whole awning and flipped it over the roof of the caravan.
The result was 3 snapped poles....2 from the roof and one of the upright poles, and one of the velco attachments torn. Needless to say, we were unable to use the awning for the remainder of the weekend. On the upside, the poles are replacable and on special at the moment. We picked the right month to break the poles! And better still the awning roof has no holes, how lucky is that?!
Once over the initial disaster, things got a little better except there were a couple of rowdy groups that the park management failed to keep in check. So both Friday and Saturday nights saw loud chatting and music until well past 2am. Not happy Jan! I know not all parks are like that, so we won't be gracing Toowoon Bay again soon, or maybe even ever.
A very different experience that's for sure. We are used to individual accommodation, not shared amenities, quiet nights and a little more luxury! I could certainly get used to it though, minus the noisy neighbours. I can't believe how rude some people are.....
Jason's reversing of the trailer was perfect, nothing to be nervous about at all!
Well that's it for now, any recommendations for nice quiet well managed parks would be appreciated for our next weekend away. Maybe a place with ensuite sites?
Anyway, take care until next time.
NEVER, NEVER, NEVER GIVE UP!!
Thursday, November 19, 2009
A bit up and down
I got my scan results today, and it was a bit of a mixed bag. On the positive side, all the tumours in my lungs and liver have shrunk and all the fluid around my lungs has gone. One of the tumours in my heart has shrunk and the fluid around my heart has reduced which is all fantastic news and probably explains why my coughing has reduced so much. Which in turn has reduced the pain I was in around my chest.
On the negative, one of the tumours in my heart increased quite significantly and the tumours in my breasts and abdomen have also become more pronounced. The worst bit of news though is I now have bone metastasis, which means the cancer has now travelled into my bones. At the moment it is just in my left hip, and I am hoping that's as far as it will go!! I will have to start concentrating on getting it out of there now too.
I am not surprised about the tumour in the heart growing as I have been experiencing a lot of tightness in my chest and a bit of shortness of breath. That's really what I take most of my breakthrough Morphine for, tightness in the chest, I don't have much pain anymore.
So I'm not really sure how I feel about all of that, of course I am thrilled about the reductions, but I can't help but be disappointed about the progression to my bones. Shit I hate cancer! It has no heart does it! It truly is a beast.
Anyway, on a brighter note we are going for our first trip in the camper trailer tomorrow. Just for the weekend but nonetheless it will be an adventure and the boys are so very excited. Matty couldn't go to sleep tonight because he is so excited about tomorrow night, sleeping in the camper trailer. We are jst going up to Toowoon Bay on the Central Coast. It's really nice up there so I am really looking forward to it too.
I am not feeling so flash tonight, I am really crook in the tummy, don't know what's brought that on......probably dinner, I cooked for the first time in months!
I might make a dash for bed, I'll fill you in on our weekend away when I get back xxx
NEVER, NEVER, NEVER GIVE UP!
On the negative, one of the tumours in my heart increased quite significantly and the tumours in my breasts and abdomen have also become more pronounced. The worst bit of news though is I now have bone metastasis, which means the cancer has now travelled into my bones. At the moment it is just in my left hip, and I am hoping that's as far as it will go!! I will have to start concentrating on getting it out of there now too.
I am not surprised about the tumour in the heart growing as I have been experiencing a lot of tightness in my chest and a bit of shortness of breath. That's really what I take most of my breakthrough Morphine for, tightness in the chest, I don't have much pain anymore.
So I'm not really sure how I feel about all of that, of course I am thrilled about the reductions, but I can't help but be disappointed about the progression to my bones. Shit I hate cancer! It has no heart does it! It truly is a beast.
Anyway, on a brighter note we are going for our first trip in the camper trailer tomorrow. Just for the weekend but nonetheless it will be an adventure and the boys are so very excited. Matty couldn't go to sleep tonight because he is so excited about tomorrow night, sleeping in the camper trailer. We are jst going up to Toowoon Bay on the Central Coast. It's really nice up there so I am really looking forward to it too.
I am not feeling so flash tonight, I am really crook in the tummy, don't know what's brought that on......probably dinner, I cooked for the first time in months!
I might make a dash for bed, I'll fill you in on our weekend away when I get back xxx
NEVER, NEVER, NEVER GIVE UP!
Tuesday, November 17, 2009
I've been a bit slack...
I haven't had that much to report the past few days, so I haven't written. Also, when I am feeling ordinary I tend not to write because I don't like to sook too much!!
Anyway, the past couple of days I have been pretty bad. Monday I was really nauseous and tired all day, one of those can't get out of bed days, and yesterday was much the same but slightly better. I have also developed a rash on my face...God only knows what that is from, time will tell I guess. My beautiful nurse has got me back on the happy tablets. I started yesterday, so should find some improvement today, hooray for the happy tablets!
I have found though, that feeling good all the time can be troublesome. I forget that I am ill. On one hand that can be good, because the positive attitude certainly aids recovery but on the other, emotionally I come crashing down when I feel bad and am reminded of the reality. It's tough....like everything else in life you have to find the balance that works, well enough to get on with life, but not so well I forget why I'm here!
I wondered why my nurse was so worried about me emotionally, now I know why, she has seen it enough times as a palliative care nurse, the massive fall after the high. So I just have to be sure that this time around on the happy tablets I don't lose touch of reality! But enjoy feeling well just the same.
If anyone can explain how I can possibly have a headache when I am so much morphine I would be really interested to know. Or even better still, Andy accidentally bent back my big toenail yesterday, it still hurts now! When people come in from car crashes on the TV they are given less morphine than I take and my toe still hurts....what's doing with that????
Anyway, enough about that! No more news on the house yet, we should get the building inspection report back today and the pest report tomorrow, and the loan should be approved today as well. Exciting times ahead. We will have to start going through everything now to be ready in time for moving, we have too much junk! I am such a hoarder and I need to stop it or I will end up on one of those current affair shows as the crazy junk lady! Speaking of shows the RPA episode with my friend Jay that I may be on is on tonight so don't miss it. Even if I'm not on it, there will be something about the support group I attend and of course a follow up to Jay's story who is a fellow Melanoma patient, or should I say Melanoma survivor!
I am off to have some scans this arvo, so I will have the results tomorrow. I don't know what to expect this time.....the same or better I think. Definitely not worse. I will let you know tomorrow when I have the results, assuming I don't break my fast again today and have to reschedule again!!
Anyway, I think that's about it for now. I will post tomorrow with the results. xxx
NEVER, NEVER, NEVER GIVE UP
Anyway, the past couple of days I have been pretty bad. Monday I was really nauseous and tired all day, one of those can't get out of bed days, and yesterday was much the same but slightly better. I have also developed a rash on my face...God only knows what that is from, time will tell I guess. My beautiful nurse has got me back on the happy tablets. I started yesterday, so should find some improvement today, hooray for the happy tablets!
I have found though, that feeling good all the time can be troublesome. I forget that I am ill. On one hand that can be good, because the positive attitude certainly aids recovery but on the other, emotionally I come crashing down when I feel bad and am reminded of the reality. It's tough....like everything else in life you have to find the balance that works, well enough to get on with life, but not so well I forget why I'm here!
I wondered why my nurse was so worried about me emotionally, now I know why, she has seen it enough times as a palliative care nurse, the massive fall after the high. So I just have to be sure that this time around on the happy tablets I don't lose touch of reality! But enjoy feeling well just the same.
If anyone can explain how I can possibly have a headache when I am so much morphine I would be really interested to know. Or even better still, Andy accidentally bent back my big toenail yesterday, it still hurts now! When people come in from car crashes on the TV they are given less morphine than I take and my toe still hurts....what's doing with that????
Anyway, enough about that! No more news on the house yet, we should get the building inspection report back today and the pest report tomorrow, and the loan should be approved today as well. Exciting times ahead. We will have to start going through everything now to be ready in time for moving, we have too much junk! I am such a hoarder and I need to stop it or I will end up on one of those current affair shows as the crazy junk lady! Speaking of shows the RPA episode with my friend Jay that I may be on is on tonight so don't miss it. Even if I'm not on it, there will be something about the support group I attend and of course a follow up to Jay's story who is a fellow Melanoma patient, or should I say Melanoma survivor!
I am off to have some scans this arvo, so I will have the results tomorrow. I don't know what to expect this time.....the same or better I think. Definitely not worse. I will let you know tomorrow when I have the results, assuming I don't break my fast again today and have to reschedule again!!
Anyway, I think that's about it for now. I will post tomorrow with the results. xxx
NEVER, NEVER, NEVER GIVE UP
Friday, November 13, 2009
Some changes!
We have some very exciting news......we have put a deposit on a house! How exciting!!!
It all happened very quickly. As you may have been aware, we were looking at a house in Castle Hill. The owner was really painful. We had started negotiations but she was greedy and a little bit stupid and now of course she has missed out entirely because we have bought somewhere else.
Also, do you remember the house that we really liked in Kellyville that we missed out on? That experience was still very fresh in our minds. With the market the way it is at the moment we needed to move quickly and that's exactly what we did.
We got a phone call from the agent saying he had just listed a property thatwas similar to the one we had missed out on. It was in Kellyville, was only 8 years old and he believed would suit us perfectly. We made an appointment to see it that afternoon, which was Thursday at 5:30pm.
We loved it. It has huge bedrooms and bathrooms. It has plenty of living space too and a pool and grassed yard out the back for the boys. The kitchen is awesome, it's got one of those cooktops with the big grill in the middle and a purified water tap. It also has a walk in pantry so that ticks some more boxes! When we left, we were sure we wanted it so rang the real estate and made our offer. We signed the contract yesterday morning so we are currently in the cooling off period, just like that.
So we will soon be residents of Kellyville, (closer to you Rosanne!!), assuming all goes fine with the settlement, I don't expect it not to, but you just don't know and I am nervous about the bank lending us the money......anyway, we will know soon enough the waiting is horrible!
I didn't end up having my scan yesterday.......I forgot about fasting and had a chocolate so I had to reschedule. The earliest I could get in was Wednesday so that's it! I expect they will be the same as last time, no progression of disease!
I am going well without my pump so far. The freedom is great and it's so flexible too. I have a little headache which apparently is withdrawal but it will pass eventually.
I am off to a birthday party now and supposed to be going to a BBQ this afternoon so I have a busy day planned, even though I could do with a sleep!
Anyway, better get going catch up again soon xxxx
NEVER, NEVER, NEVER GIVE UP
It all happened very quickly. As you may have been aware, we were looking at a house in Castle Hill. The owner was really painful. We had started negotiations but she was greedy and a little bit stupid and now of course she has missed out entirely because we have bought somewhere else.
Also, do you remember the house that we really liked in Kellyville that we missed out on? That experience was still very fresh in our minds. With the market the way it is at the moment we needed to move quickly and that's exactly what we did.
We got a phone call from the agent saying he had just listed a property thatwas similar to the one we had missed out on. It was in Kellyville, was only 8 years old and he believed would suit us perfectly. We made an appointment to see it that afternoon, which was Thursday at 5:30pm.
We loved it. It has huge bedrooms and bathrooms. It has plenty of living space too and a pool and grassed yard out the back for the boys. The kitchen is awesome, it's got one of those cooktops with the big grill in the middle and a purified water tap. It also has a walk in pantry so that ticks some more boxes! When we left, we were sure we wanted it so rang the real estate and made our offer. We signed the contract yesterday morning so we are currently in the cooling off period, just like that.
So we will soon be residents of Kellyville, (closer to you Rosanne!!), assuming all goes fine with the settlement, I don't expect it not to, but you just don't know and I am nervous about the bank lending us the money......anyway, we will know soon enough the waiting is horrible!
I didn't end up having my scan yesterday.......I forgot about fasting and had a chocolate so I had to reschedule. The earliest I could get in was Wednesday so that's it! I expect they will be the same as last time, no progression of disease!
I am going well without my pump so far. The freedom is great and it's so flexible too. I have a little headache which apparently is withdrawal but it will pass eventually.
I am off to a birthday party now and supposed to be going to a BBQ this afternoon so I have a busy day planned, even though I could do with a sleep!
Anyway, better get going catch up again soon xxxx
NEVER, NEVER, NEVER GIVE UP
Monday, November 9, 2009
Not happy Jan.....
So, I went to my appointment yesterday afternoon hoping for some news about putting me forward for the b-raf trial again. Not to be the case!!!
It seems that there was some misunderstanding about what needed to happen for me to get on the trial. I was under the impression that I had to have 2 consecutive shrinkages on the tumour in my heart and then they could put me forward again. Apparently, what I need is my heart strength to improve. It needs to be the same as a normal person or at least double the strength it was, and even then it will be a struggle to get me onto the trial because of the history of heart trouble. Furthermore, even though the tumours have shrunk the damage to my heart may be permanent and therefore there will never be improvement in the strength!
So that was a bit of a bummer....no trial in the foreseeable future, but that's OK I can beat it anyway. In the meantime, any suggestions on heart strengthening exercises/ medications/ remedies and any prayers for that to happen are gladly received. I plan on looking at some herbal remedies that are known as heart tonics and see what I can come up with there.
I really didn't want to have anymore chemo either. I find the whole experience traumatic. From the infusion to how I feel afterwards. Some people can deal with the whole thing. Not me. I am a bit too much of a sook and would rather find an alternative. Apparently, you can take my chemo drug orally. So they are applying on my behalf to allow me permission to take the drug orally. It's not government funded so there have to be compassionate grounds to get approval. The doctor seemed to be fairly confident that could happen. At least I wouldn't have to go through the whole needle, infusion, pain part but I would still have the same side effects. Hopefully those can be controlled as well as the happy drugs did last time.
On a completely different topic, we took the camper trailer to a friends place that live on a property to practice putting up and down and reversing. It took us most of the late afternoon to put it up and down and Jason had just a couple of reverses so he needs a bit more practice. We will go out again on Thursday to do it all again and hopefully be experts before pulling up at the caravan park for the first time in the next week or so!
I also may be getting a change to my medication. Instead of the pump I may go back to taking the drugs orally. That will give me more freedom as far as going away goes because I don't need a nurse to change it everyday or the site needles changed, but also things like swimming will not be a drama because I won't have all the needles to cover up and try to keep dry and away from infection. Hopefully, the change will be effective because it will make a fairly big difference to my lifestyle and definitely with travelling. I meet with the palliative care doctor about that tomorrow morning so I expect the change will happen fairly quickly it will just be a matter of monitoring it.....hopefully out of hospital.
Well, enough for now xxxxx
NEVER, NEVER, NEVER GIVE UP!
It seems that there was some misunderstanding about what needed to happen for me to get on the trial. I was under the impression that I had to have 2 consecutive shrinkages on the tumour in my heart and then they could put me forward again. Apparently, what I need is my heart strength to improve. It needs to be the same as a normal person or at least double the strength it was, and even then it will be a struggle to get me onto the trial because of the history of heart trouble. Furthermore, even though the tumours have shrunk the damage to my heart may be permanent and therefore there will never be improvement in the strength!
So that was a bit of a bummer....no trial in the foreseeable future, but that's OK I can beat it anyway. In the meantime, any suggestions on heart strengthening exercises/ medications/ remedies and any prayers for that to happen are gladly received. I plan on looking at some herbal remedies that are known as heart tonics and see what I can come up with there.
I really didn't want to have anymore chemo either. I find the whole experience traumatic. From the infusion to how I feel afterwards. Some people can deal with the whole thing. Not me. I am a bit too much of a sook and would rather find an alternative. Apparently, you can take my chemo drug orally. So they are applying on my behalf to allow me permission to take the drug orally. It's not government funded so there have to be compassionate grounds to get approval. The doctor seemed to be fairly confident that could happen. At least I wouldn't have to go through the whole needle, infusion, pain part but I would still have the same side effects. Hopefully those can be controlled as well as the happy drugs did last time.
On a completely different topic, we took the camper trailer to a friends place that live on a property to practice putting up and down and reversing. It took us most of the late afternoon to put it up and down and Jason had just a couple of reverses so he needs a bit more practice. We will go out again on Thursday to do it all again and hopefully be experts before pulling up at the caravan park for the first time in the next week or so!
I also may be getting a change to my medication. Instead of the pump I may go back to taking the drugs orally. That will give me more freedom as far as going away goes because I don't need a nurse to change it everyday or the site needles changed, but also things like swimming will not be a drama because I won't have all the needles to cover up and try to keep dry and away from infection. Hopefully, the change will be effective because it will make a fairly big difference to my lifestyle and definitely with travelling. I meet with the palliative care doctor about that tomorrow morning so I expect the change will happen fairly quickly it will just be a matter of monitoring it.....hopefully out of hospital.
Well, enough for now xxxxx
NEVER, NEVER, NEVER GIVE UP!
Sunday, November 8, 2009
The Zoo
The zoo was great!
I would highly recommend it to anyone. Because we stayed at the zoo they have a set itinerary for you to follow that includes 3 behind the scenes safaris. Unfortunately, we missed the first one because of the stupid train, (I'll tell you about that one later!), but we managed to catch the last 2. There was one after dinner, which was also included in the price, where we went to the lions wolves, hippos and a wombat. We fed all of them, and of course because it was night time they were very active. It was great. Before brekky the next morning we went to see a black rhino, a Bongo, which is a kind of antelope, the elephant and gibbons. They were all great fun too, my particular favourite from the morning group was feeding the rhino. He was very cute.
We were left a full day then to explore the zoo on our own. Unfortunately, mostly due to lack of sleep, I wasn't in my greatest form, so we had to do the drive around zoo experience rather than taking our time either walking or on bikes. It meant an afternoon rest for us all which was greatly needed!! We did manage to see everything though so we got the whole experience.
Now the train trip!! We left Sydney 40 mins late, but on top of that lost nearly an hour on the trip. Not good with 3 youngsters and not much to entertain them on the train. All things considered they did incredibly well but I vowed we wouldn't be getting back on that train to come home. Because of it's lateness, we missed the first safari at the zoo which included visits to the tigers and meerkats. Anyone that knows me knows my favourite animnals are tigers with meerkats a close second.
We ended up hiring a car to get back, yes it cost a small fortune but was worth every cent in my opinion!!
Now, the house. By the time we rang up to make our offer, it had already sold. Do you believe that. We were terribly disappointed but obviously, it wasn't meant to be. Instead we are now pursuing the Castle Hill house. We put in an offer yesterday but haven't heard anything back at this stage. I expect that we should have an agreed price by the end of the day.
Today is quite a big day.....we are about to go and pick up the camper trailer. How exciting!!! Can't wait.
Then this afternoon I have an appointment with my oncologist so we can reassess what to do about the b-raf thing. I think they should be able to put me forward again now after another set of positive scans. I will have an answer though on that one after my appointment this afternoon, so I will update you then.
I think that's everything for now so look forward to an update later.
Until then xxxx
NEVER, NEVER, NEVER GIVE UP.
I would highly recommend it to anyone. Because we stayed at the zoo they have a set itinerary for you to follow that includes 3 behind the scenes safaris. Unfortunately, we missed the first one because of the stupid train, (I'll tell you about that one later!), but we managed to catch the last 2. There was one after dinner, which was also included in the price, where we went to the lions wolves, hippos and a wombat. We fed all of them, and of course because it was night time they were very active. It was great. Before brekky the next morning we went to see a black rhino, a Bongo, which is a kind of antelope, the elephant and gibbons. They were all great fun too, my particular favourite from the morning group was feeding the rhino. He was very cute.
We were left a full day then to explore the zoo on our own. Unfortunately, mostly due to lack of sleep, I wasn't in my greatest form, so we had to do the drive around zoo experience rather than taking our time either walking or on bikes. It meant an afternoon rest for us all which was greatly needed!! We did manage to see everything though so we got the whole experience.
Now the train trip!! We left Sydney 40 mins late, but on top of that lost nearly an hour on the trip. Not good with 3 youngsters and not much to entertain them on the train. All things considered they did incredibly well but I vowed we wouldn't be getting back on that train to come home. Because of it's lateness, we missed the first safari at the zoo which included visits to the tigers and meerkats. Anyone that knows me knows my favourite animnals are tigers with meerkats a close second.
We ended up hiring a car to get back, yes it cost a small fortune but was worth every cent in my opinion!!
Now, the house. By the time we rang up to make our offer, it had already sold. Do you believe that. We were terribly disappointed but obviously, it wasn't meant to be. Instead we are now pursuing the Castle Hill house. We put in an offer yesterday but haven't heard anything back at this stage. I expect that we should have an agreed price by the end of the day.
Today is quite a big day.....we are about to go and pick up the camper trailer. How exciting!!! Can't wait.
Then this afternoon I have an appointment with my oncologist so we can reassess what to do about the b-raf thing. I think they should be able to put me forward again now after another set of positive scans. I will have an answer though on that one after my appointment this afternoon, so I will update you then.
I think that's everything for now so look forward to an update later.
Until then xxxx
NEVER, NEVER, NEVER GIVE UP.
Monday, November 2, 2009
Happy Melbourne Cup!
I don't have any bets on, I think for the first time in my adult life! What's going on??
I am still very happy with my happy drugs. I only have one more day to go and then I start to come off them. This morning, I actually got Hamish up and fed him. I found I had the strength and energy to hold him and that's the first time since I got sick in August. Amazing what one little tablet can do hey! It's a shame you can only take them for a short amount of time, it would be great to be feeling good all the time. Apparently some residual "goodness" may hang over.
To completely change the subject, we haven't made an offer on the house yet. We are playing games, which I personally don't understand, with the agent. Jason doesn't want him to know how keen we are. I don't really see the point because as soon as we make an offer he will know we are keen won't he?? Am I missing something here?
I am still pretty excited though. The more I think about the house, the more perfect it is for us. I just can't wait to get out of this house I think. It's been such a bug bear with it's dampness and mould. I can't wait to be out of here! There are some good memories in this house but they are mostly overshadowed by it's problems. Man, we will miss our neighbours though. They are and have been great in the past 2 years. Shame we can't take them with us!!!
I think Jason is planning on putting in an offer today on the house so I will keep you posted.
Not much else to share. We are off to the zoo tomorrow can't wait, so I won't be writing for a couple of days now, probably not until Saturday unless to tell you we have the house!
Take care and love to all xxxx
NEVER, NEVER, NEVER GIVE UP
I am still very happy with my happy drugs. I only have one more day to go and then I start to come off them. This morning, I actually got Hamish up and fed him. I found I had the strength and energy to hold him and that's the first time since I got sick in August. Amazing what one little tablet can do hey! It's a shame you can only take them for a short amount of time, it would be great to be feeling good all the time. Apparently some residual "goodness" may hang over.
To completely change the subject, we haven't made an offer on the house yet. We are playing games, which I personally don't understand, with the agent. Jason doesn't want him to know how keen we are. I don't really see the point because as soon as we make an offer he will know we are keen won't he?? Am I missing something here?
I am still pretty excited though. The more I think about the house, the more perfect it is for us. I just can't wait to get out of this house I think. It's been such a bug bear with it's dampness and mould. I can't wait to be out of here! There are some good memories in this house but they are mostly overshadowed by it's problems. Man, we will miss our neighbours though. They are and have been great in the past 2 years. Shame we can't take them with us!!!
I think Jason is planning on putting in an offer today on the house so I will keep you posted.
Not much else to share. We are off to the zoo tomorrow can't wait, so I won't be writing for a couple of days now, probably not until Saturday unless to tell you we have the house!
Take care and love to all xxxx
NEVER, NEVER, NEVER GIVE UP
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