I have done it again. I have left posting so long that it is going to end up like war and peace! I will try to cover everything but keeping it short. Firstly, thanks to Jas for posting last time for me....I couldn't bring myself to do it too tired and sick really.
So I think Jason finished up at the chemo with me going to start it that night. I am a big fan of getting on with stuff so if you know me you know I would be eager to bring it on!
No particularly obvious side effects the first days but toward the end of the week things went on a pretty dramatic downward spiral. I can only assume that it is a mixture of the chemo drugs and the change in my heart medication, and other meds seeing as the doctors can't tell me any better.
So we went away to Blue Lagoon for the weekend. I had been looking forward to it for a long time but unfortunately I was really ill the whole time. I stayed in the camper trailer most of the time........sleeping. Fiona and Barry and the girls still came and we spent a lot of time just sitting and chatting. Aunty Jan, Uncle Les, Richard, Amy, Heidi & Gavin were also up there so we spent some time saying hello with them. Good for Heidi she didn't need to explain why she wanted a liedown halfway through. Takes one to know one hey!
Anyhow, we were meant to stay up there from Saturday until to the Tuesday. With me being so sick we decided to go home.
By Wednesday I just wasn't getting any any better so it was time to do something about it. We rang the oncology team at Westmead and they suggested we come straight in. They did a whole lot of tests which all came back within normal limits so the option was to stay there and see how it goes or stay at home and see how it goes. And of course which one did I choose.........so here I am at home but still feeling a bit shit. I don't expect an answer as to what's wrong I will just assume nothing too major or it would come up somewhere.
I have to sleep now, I'm exhausted
Lots of love xxx
NEVER, NEVER,NEVER GIVE UP
Wednesday, January 27, 2010
Monday, January 18, 2010
On Occasions You Will Have to Deal With Me
Due to Judy feeling pretty ordinary over the last couple of days coupled with the fact we have had a number of appointment in the last week we felt it would be best if I got of my backside and contributed to give you all an update.
Firstly while I say that she has been ordinary she is OK but has just been spending most the time between appointments resting and then feels awful then telling everybody she has been feeling terrible. Anyway moving past that and following the trip to the cardioligist on Tuesday we went to see Palliative Care on Wednesday, what a pleasant visit. Firstly Dr Lee was on time, he grabbed us while we were still waiting to check in, he was far more personable and has a history of Judy's case, while we were probably only their for 20 mins he covered everything. We walked away thinking how great it is to have such professional help even to the point where he was solving problems other doctors should have known about, such as the happy drugs leading to an increased white blood cell count. The outcome of the visit was that he dropped the dossage of the happy drug and also felt that based on how Judy appeared and felt that we should drop the daily dossage of morphine by a third. This coupled with the increase in the dossage of the heart drug from the day before meant we had 3 drug changes all going on at once. The result of this was that Judy had her worst two days for quite some time on Thursday & Friday so we increased the morphine back to the original dossage on Friday evening and Judy has begun to feel much better over the last two days. While she feels better, she still feels tired and has lost her appetite a bit. While we can rationalise this in our heads as side effects of the dossage changes and we are happy that her test results are moving in the right direction we need to make sure she stays active. With this in mind it was great to see her spend on hour outside this evening watching the boys ride their bikes after dinner, even though she froze her backside off in the middle of summer.
Come Thursday it was time to head off for a CT scan and the joys of drinking the lovely (not) fluid before the scan. We picked up the results on Friday morning and were pleasantly surprised to find that the majority of tumors had stayed the same, some even showed minor shrinkages. The major tumor in her liver had increased slightly but considering the last cycle of chemo was about 2 months ago we saw the overall result as very positive.
Also on Friday we had an appointment with the gastroenterologist to try to find out if the ulcerative colitis was the reason behind the blood appearing on occassions when going to the loo, it may have also been a reason for the high white blood cell count. While we parted with $250 for 15 mins work we did find out that the antibiotics Judy had been taking for a month have a history of causing bowel flare ups which can result in blood. Fortunately the doctor prescribed an antibiotic that is supposed to help ease the flare up, yet another drug. Then just to add more pain to the day we stopped on the way home for the blood test from hell. I wasn't the one the nurse was jabbing with the syringe while moving it all over the place to try and get the blood flowing. As usual they tried to blame it on not drinking enough water but by the end of the second canister being filled the blood was flowing well and all the way down Judy's arm, not a good way to keep your patient calm.
So that was the end of visits for that week which was pretty full on and could also have been a reason for Judy feeling a bit off. Come the new week and we kicked it off with another visit to the cancer clinic to see if we could get chemo started. Once again while the appointment was for noon we didn't end up going in until after 1:30pm only to find that we had the same doctor from the nightmare appointment a fortnight ago. While I could go on forever about him I will only say that the appointment was a huge improvement on the last visit, it's amazing what happens when the doctor has prior knowledge of the case. The one funny piece was that when he advised us that the white blood cell count had dropped he then proceeded to tell us it was a result of the batch of antibiotics that Judy had taken since the last visit. Due to us feeling the antibiotics were causing Judy's bowels harm she didn't take the cycle of antibiotics, so it's interesting that this is what caused the drop. If they worked better as a team they may have realised that the Dex (happy drugs) can push white blood cell counts up and the reduction in the dossage probably caused the drop. Judy didn't say anything about not taking the antibiotics so I wasn't going to put my foot in it, this became our secret which Judy later shared with the community nurse. With the white blood cell count reducing they were happy to get Judy started on the oral chemo so as I type she had the first of five tablets a couple of hours ago. The other news that came out of the appointment was that when Judy's case was being reveiwed by the higher powers the felling was that if her heart continues to improve then they might be able to push for b-raf in March. It's great to potentially have that option again but we are not getting our hopes up to much in that we believe that even without b-raf we will beat this disease, all b-raf will do if that's the road we take is accelerate the time it will take to beat it.
With all the appointments and news to share on these I haven't said much else about what is going on with us but I am sure Judy will enjoy sharing thoughts on our planned trip in the camper trailer to Blue Lagoon up at Bateau Bay. We were able to organise the trip due to the fact we already have a good chunk of the house packed up. Based on our last visit it's a great place to go and it's an added bonus that Fiona, Barry and the girls and also my Aunt & Uncle will be staying in the same caravan park. Also fast approaching on the radar is Matt starting big school, we were able to tick the last item off our list on the weekend when we got him his first pair of school shoes. Now his go but she can fill you in on that next time.
For those that are with me I will go now so I can join Judy in slumberland. Take care.
NEVER, NEVER, NEVER GIVE UP!
Firstly while I say that she has been ordinary she is OK but has just been spending most the time between appointments resting and then feels awful then telling everybody she has been feeling terrible. Anyway moving past that and following the trip to the cardioligist on Tuesday we went to see Palliative Care on Wednesday, what a pleasant visit. Firstly Dr Lee was on time, he grabbed us while we were still waiting to check in, he was far more personable and has a history of Judy's case, while we were probably only their for 20 mins he covered everything. We walked away thinking how great it is to have such professional help even to the point where he was solving problems other doctors should have known about, such as the happy drugs leading to an increased white blood cell count. The outcome of the visit was that he dropped the dossage of the happy drug and also felt that based on how Judy appeared and felt that we should drop the daily dossage of morphine by a third. This coupled with the increase in the dossage of the heart drug from the day before meant we had 3 drug changes all going on at once. The result of this was that Judy had her worst two days for quite some time on Thursday & Friday so we increased the morphine back to the original dossage on Friday evening and Judy has begun to feel much better over the last two days. While she feels better, she still feels tired and has lost her appetite a bit. While we can rationalise this in our heads as side effects of the dossage changes and we are happy that her test results are moving in the right direction we need to make sure she stays active. With this in mind it was great to see her spend on hour outside this evening watching the boys ride their bikes after dinner, even though she froze her backside off in the middle of summer.
Come Thursday it was time to head off for a CT scan and the joys of drinking the lovely (not) fluid before the scan. We picked up the results on Friday morning and were pleasantly surprised to find that the majority of tumors had stayed the same, some even showed minor shrinkages. The major tumor in her liver had increased slightly but considering the last cycle of chemo was about 2 months ago we saw the overall result as very positive.
Also on Friday we had an appointment with the gastroenterologist to try to find out if the ulcerative colitis was the reason behind the blood appearing on occassions when going to the loo, it may have also been a reason for the high white blood cell count. While we parted with $250 for 15 mins work we did find out that the antibiotics Judy had been taking for a month have a history of causing bowel flare ups which can result in blood. Fortunately the doctor prescribed an antibiotic that is supposed to help ease the flare up, yet another drug. Then just to add more pain to the day we stopped on the way home for the blood test from hell. I wasn't the one the nurse was jabbing with the syringe while moving it all over the place to try and get the blood flowing. As usual they tried to blame it on not drinking enough water but by the end of the second canister being filled the blood was flowing well and all the way down Judy's arm, not a good way to keep your patient calm.
So that was the end of visits for that week which was pretty full on and could also have been a reason for Judy feeling a bit off. Come the new week and we kicked it off with another visit to the cancer clinic to see if we could get chemo started. Once again while the appointment was for noon we didn't end up going in until after 1:30pm only to find that we had the same doctor from the nightmare appointment a fortnight ago. While I could go on forever about him I will only say that the appointment was a huge improvement on the last visit, it's amazing what happens when the doctor has prior knowledge of the case. The one funny piece was that when he advised us that the white blood cell count had dropped he then proceeded to tell us it was a result of the batch of antibiotics that Judy had taken since the last visit. Due to us feeling the antibiotics were causing Judy's bowels harm she didn't take the cycle of antibiotics, so it's interesting that this is what caused the drop. If they worked better as a team they may have realised that the Dex (happy drugs) can push white blood cell counts up and the reduction in the dossage probably caused the drop. Judy didn't say anything about not taking the antibiotics so I wasn't going to put my foot in it, this became our secret which Judy later shared with the community nurse. With the white blood cell count reducing they were happy to get Judy started on the oral chemo so as I type she had the first of five tablets a couple of hours ago. The other news that came out of the appointment was that when Judy's case was being reveiwed by the higher powers the felling was that if her heart continues to improve then they might be able to push for b-raf in March. It's great to potentially have that option again but we are not getting our hopes up to much in that we believe that even without b-raf we will beat this disease, all b-raf will do if that's the road we take is accelerate the time it will take to beat it.
With all the appointments and news to share on these I haven't said much else about what is going on with us but I am sure Judy will enjoy sharing thoughts on our planned trip in the camper trailer to Blue Lagoon up at Bateau Bay. We were able to organise the trip due to the fact we already have a good chunk of the house packed up. Based on our last visit it's a great place to go and it's an added bonus that Fiona, Barry and the girls and also my Aunt & Uncle will be staying in the same caravan park. Also fast approaching on the radar is Matt starting big school, we were able to tick the last item off our list on the weekend when we got him his first pair of school shoes. Now his go but she can fill you in on that next time.
For those that are with me I will go now so I can join Judy in slumberland. Take care.
NEVER, NEVER, NEVER GIVE UP!
Tuesday, January 12, 2010
The rollercoaster continues....
Well, thankfully I got it all wrong.
My heart is actually better than the last echocardiograph. So my appointment yesterday afternoon was pretty much all good news!
Apparently, my heart has come along from really bad where I could have dropped over dead any old time, (19% effectiveness), to just a bit dodgy and the risk of "falling off my perch" is moderate (35% effectiveness). Now while that's still not great it's a hell of a lot better than we were expecting to hear.
He went on to say that by increasing the dose of the heart drug he is giving me there is a real possibility he could get my heart even better say up to 50% and then we can go forward with the trial again. Remember, B-raf?? We had completely given up on that one too.
Anyway, I just wanted to give you the good news so you weren't left worrying any longer than need be.
Take care,
NEVER, NEVER, NEVER GIVE UP
My heart is actually better than the last echocardiograph. So my appointment yesterday afternoon was pretty much all good news!
Apparently, my heart has come along from really bad where I could have dropped over dead any old time, (19% effectiveness), to just a bit dodgy and the risk of "falling off my perch" is moderate (35% effectiveness). Now while that's still not great it's a hell of a lot better than we were expecting to hear.
He went on to say that by increasing the dose of the heart drug he is giving me there is a real possibility he could get my heart even better say up to 50% and then we can go forward with the trial again. Remember, B-raf?? We had completely given up on that one too.
Anyway, I just wanted to give you the good news so you weren't left worrying any longer than need be.
Take care,
NEVER, NEVER, NEVER GIVE UP
Saturday, January 9, 2010
OK, so now I'm scared.......again
I had my echocardiograph on Friday morning...the one he originally questioned me needing!!
You always know the outcome isn't going to be good when within seconds of placing the ultrasound thing on my heart and doing a quick sweep around the technician says, "Are you seeing a cardiologist Judy?" Of course my answer was no, but I will be now, "....my first appointment is on 19th January." She was pleased about that, and told me that the cardiologist I am seeing is a bit of an expert when it comes to cancer patients with heart problems so that's good news.
Anyway, the procedure continued with a bit of banter and basically her telling me that she can't tell me much because the doctor needs to look at it. By the time we got to the end though she was unhappy with my appointment on the 19th. She wanted me to see the doctor sooner so looked for an earlier date. Now I was worried.....if it can't wait a week it must be pretty bad. You see the doctor is away on holidays at the moment and his first day back is Tuesday, and of course, that's when I now have an appointment. Tuesday afternoon at 2:45pm.
It's been a while, like a couple of months I think, since I have been scared. But I am really beside myself. The poor technician was trying to change the appointment with the minimum of fuss and she was obviously trying not to alarm me. In the end she gave up, because you can't pretend that you want to change it for any reason other than that the results you see on the screen are not good.
Oh gosh, what lies ahead now. I know this is exactly what I shouldn't be thinking, and of course the last thing I should be doing is worrying, but there you go.......I am human, and some things you just can't help.
On the up side, at least someone is looking at it now, and based on the urgency of getting me seen earlier it would suggest they may actually be able to do something about it.
So until Tuesday, when I can tell you some more, I will go and try not to worry too much!!
Take care xxx
NEVER, NEVER, NEVER GIVE UP
You always know the outcome isn't going to be good when within seconds of placing the ultrasound thing on my heart and doing a quick sweep around the technician says, "Are you seeing a cardiologist Judy?" Of course my answer was no, but I will be now, "....my first appointment is on 19th January." She was pleased about that, and told me that the cardiologist I am seeing is a bit of an expert when it comes to cancer patients with heart problems so that's good news.
Anyway, the procedure continued with a bit of banter and basically her telling me that she can't tell me much because the doctor needs to look at it. By the time we got to the end though she was unhappy with my appointment on the 19th. She wanted me to see the doctor sooner so looked for an earlier date. Now I was worried.....if it can't wait a week it must be pretty bad. You see the doctor is away on holidays at the moment and his first day back is Tuesday, and of course, that's when I now have an appointment. Tuesday afternoon at 2:45pm.
It's been a while, like a couple of months I think, since I have been scared. But I am really beside myself. The poor technician was trying to change the appointment with the minimum of fuss and she was obviously trying not to alarm me. In the end she gave up, because you can't pretend that you want to change it for any reason other than that the results you see on the screen are not good.
Oh gosh, what lies ahead now. I know this is exactly what I shouldn't be thinking, and of course the last thing I should be doing is worrying, but there you go.......I am human, and some things you just can't help.
On the up side, at least someone is looking at it now, and based on the urgency of getting me seen earlier it would suggest they may actually be able to do something about it.
So until Tuesday, when I can tell you some more, I will go and try not to worry too much!!
Take care xxx
NEVER, NEVER, NEVER GIVE UP
Monday, January 4, 2010
The appointment
Well I think this was the worst appointment I have ever had. I was seen by yet another doctor, so further of the no continuity, but also, he was useless.
He spent the first 10mins bumbling around with the notes so didn't listen to anything I had to say. Seeing as I had some new pertinent points to make this time, like the blood when I went to the toilet, it might have been handy for him to listen!!
Anyway, once we got through that and I had repeated myself 3 times, we started talking about my heart. I asked what follow up should be happening given when I left hospital I was meant to have echo cardiographs every 3 weeks to keep an eye on things and I had only had one!! He asked why would I need to have it checked!!!!!!! I nearly fell off my chair. Clearly what he had read in the notes either hadn't sunk in or he just didn't read anything about my heart. Not to mention the "cardiac event" I had just before Christmas.
Finally, he came across the results of the echocardiograph I had at the end of September. Oh, he said, oh we need to do something about this. Apparently, the results are pretty bad.......I only have 19% usage of my heart. I have severe systolic left ventricular dysfunction, moderate diastolic left ventricular dysfunction and there is some collapsing of the right side of my heart. So all in all, it's not good, and plenty of reason for me to be having regular check-ups.
I found it rather amusing how he went from questioning me as to why on earth I should be having another echo to writing me a referral with some urgency. Amazing what happens when you know a bit more about your patient isn't it!
Anyway, I am a little disappointed that they had that information and no-one has followed up with me. At what point does someone go, this is pretty severe heart issues should we get her to see a cardiologist? Apparently not......it jut gets filed and someday when the patient asks about it we will pull it out and be surprised we have done nothing.
So that was the heart....next was the chemo.
No chemo for another 2 weeks. He doesn't know what the infection is, but can't take the risk of me starting chemo and getting REALLY sick. I am getting a bit worried about leaving it so long now. I keep thinking it's an opening for the cancer to take hold again. I guess the CT scan next week will gie us a very good indication of where it's at rigt now.
He gave me another round of antibiotics, which I won't take knowing what that does to my guts, (makes them more sick), and suggested I see my gastroenterologist to get them to say that it's a flare up of the ulcerative colitis causing the high white blood count, the bleeding and the pains in the tummy.
I suppose at least the lack of heart function explains why I get so tired so quickly.
Anyway, that's it for today.........until next time.xxx
NEVER, NEVER, NEVER GIVE UP!
He spent the first 10mins bumbling around with the notes so didn't listen to anything I had to say. Seeing as I had some new pertinent points to make this time, like the blood when I went to the toilet, it might have been handy for him to listen!!
Anyway, once we got through that and I had repeated myself 3 times, we started talking about my heart. I asked what follow up should be happening given when I left hospital I was meant to have echo cardiographs every 3 weeks to keep an eye on things and I had only had one!! He asked why would I need to have it checked!!!!!!! I nearly fell off my chair. Clearly what he had read in the notes either hadn't sunk in or he just didn't read anything about my heart. Not to mention the "cardiac event" I had just before Christmas.
Finally, he came across the results of the echocardiograph I had at the end of September. Oh, he said, oh we need to do something about this. Apparently, the results are pretty bad.......I only have 19% usage of my heart. I have severe systolic left ventricular dysfunction, moderate diastolic left ventricular dysfunction and there is some collapsing of the right side of my heart. So all in all, it's not good, and plenty of reason for me to be having regular check-ups.
I found it rather amusing how he went from questioning me as to why on earth I should be having another echo to writing me a referral with some urgency. Amazing what happens when you know a bit more about your patient isn't it!
Anyway, I am a little disappointed that they had that information and no-one has followed up with me. At what point does someone go, this is pretty severe heart issues should we get her to see a cardiologist? Apparently not......it jut gets filed and someday when the patient asks about it we will pull it out and be surprised we have done nothing.
So that was the heart....next was the chemo.
No chemo for another 2 weeks. He doesn't know what the infection is, but can't take the risk of me starting chemo and getting REALLY sick. I am getting a bit worried about leaving it so long now. I keep thinking it's an opening for the cancer to take hold again. I guess the CT scan next week will gie us a very good indication of where it's at rigt now.
He gave me another round of antibiotics, which I won't take knowing what that does to my guts, (makes them more sick), and suggested I see my gastroenterologist to get them to say that it's a flare up of the ulcerative colitis causing the high white blood count, the bleeding and the pains in the tummy.
I suppose at least the lack of heart function explains why I get so tired so quickly.
Anyway, that's it for today.........until next time.xxx
NEVER, NEVER, NEVER GIVE UP!
Friday, January 1, 2010
Happy New Year
First of all thanks for all your beautiful comments on my last blog. I really appreciate your lovely thoughts and of course your love and support.
We had a great time in the city. We were a little bit naughty and stayed in a room that was supposed to only have a maximum of 3 but we managed to make a mattress on the floor for the bigger boys by shuffling around some seat cushions, pillows and a spare blanket. The view was amazing and the hotel very posh!
We had dinner with Jason's parents on the Wednesday night at the hotel and went on a train ride after dinner which was huge excitement for the boys. Isn't it funny how the simplest of things entertain them.
For the fireworks, we were fortunate enough to be invited to a friend of Jason's place who owns an apartment in the "toaster" so right down on Circular Quay looking right at the bridge. So we spent the day people watching from our hotel room and at about 8pm walked down to Peter's place to watch the fireworks. We had originally planned on only staying there for the 9pm fireworks and watching the midnight ones from our hotel room, but the boys were OK and wide awake so we just waited around until midnight and took those in from the prime position also. We were very lucky and they were awesome. You should have seen the look on the kids faces....they were completely mesmerised. Even little Hamish!
It was a great night and while something we will probably never do again, (unless we win lotto!!!!), it was worth every cent to share the experience with the kids. Hopefully they remember it for a long time to come.
On a health note, I think I have caught a stomach bug from Matt. He had been feeling unwell for the past day or so and now it seems its my turn! It wouldn't bother me too much, but when I went to the loo this morning there was a lot of blood. Now I am not a doctor, but I know that's not good. I am guessing it may be another symptom of the disease but I will ask on Monday when I see them for my latest check up. Nothing is simple anymore...I can't even just get a tummy bug!!!
We had a great time in the city. We were a little bit naughty and stayed in a room that was supposed to only have a maximum of 3 but we managed to make a mattress on the floor for the bigger boys by shuffling around some seat cushions, pillows and a spare blanket. The view was amazing and the hotel very posh!
We had dinner with Jason's parents on the Wednesday night at the hotel and went on a train ride after dinner which was huge excitement for the boys. Isn't it funny how the simplest of things entertain them.
For the fireworks, we were fortunate enough to be invited to a friend of Jason's place who owns an apartment in the "toaster" so right down on Circular Quay looking right at the bridge. So we spent the day people watching from our hotel room and at about 8pm walked down to Peter's place to watch the fireworks. We had originally planned on only staying there for the 9pm fireworks and watching the midnight ones from our hotel room, but the boys were OK and wide awake so we just waited around until midnight and took those in from the prime position also. We were very lucky and they were awesome. You should have seen the look on the kids faces....they were completely mesmerised. Even little Hamish!
It was a great night and while something we will probably never do again, (unless we win lotto!!!!), it was worth every cent to share the experience with the kids. Hopefully they remember it for a long time to come.
On a health note, I think I have caught a stomach bug from Matt. He had been feeling unwell for the past day or so and now it seems its my turn! It wouldn't bother me too much, but when I went to the loo this morning there was a lot of blood. Now I am not a doctor, but I know that's not good. I am guessing it may be another symptom of the disease but I will ask on Monday when I see them for my latest check up. Nothing is simple anymore...I can't even just get a tummy bug!!!
I didn't end up getting my blood test on Wednesday either, so I have to get it tomorrow. Hopefully the result will come through quickly enough for them to be able to start the chemo on Monday.....I am starting to think that the cancer is getting a grip back again, first with the heart thing now with the blood. The chemo should knock it out again though, not to mention all the other methods I have at my disposal!!!
Well, enough for now, I will update after Monday's appointment when I know more about the chemo xxx
NEVER, NEVER, NEVER GIVE UP!
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