Similar to yesterday not a great deal occurred today as the doctors only come in on Sundays in the case of an emergency. One thing that did happen is Judy's heart was not responding to the heart tablets she started yesterday as she had spells where her atrial fibrillation (AF) stayed around for long periods of time. This is effectively the technical term for her heart beating irregularly which in her case is beating far quicker than normal giving the effect she is running a marathon even though she is resting. The result of this is she is extremely tired which makes it very difficult if she has a large number of visitors as she tires extremely quickly. This was confirmed again today by me not getting to the hospital until 3pm and finding that she spend 99% of the time that I was there a sleep.
I will write again tomorrow by which time hopefully the tablets are being more successful and her heart begins to beat normally as the AF places huge amounts of strain on her heart.
NEVER, NEVER, NEVER GIVE UP
Sunday, February 28, 2010
Saturday, February 27, 2010
Quick Update
Not much happened today, we are pretty much in the same position. One thing that did happen was that Judy was given a new drug to slow down her heart rate as her heart was regularly beating way to quick. I mentioned yesterday that she would get a drug to strenghten her heart but I was wrong as the drug will just slow her heartbeat to stop her feeling so exhausted. She also had a scan done on her bowel as while the dhiorrea has slowed it hasn't gone away fully so they want to understand what exactly is going on.
Catch you tomorrow.
NEVER, NEVER, NEVER GIVE UP
Catch you tomorrow.
NEVER, NEVER, NEVER GIVE UP
Friday, February 26, 2010
More Rough News
I will not be as long today and will try to give you all daily updates which will be short and will only concentrate on Judy's condition.
Today Judy had the ultrasound on heart that I mentioned yesterday, it showed that the fluid has not built up around her heart again which is great news as she is not in a good state to undergo more draining. The downside to this is that it is tumour that has caused the heart to look enlarged, while they didn't have the prior scans to compare growth it does show sizable tumours. The other update we received is that they tried to complete a test to measure the strength of her heart but couldn't due to the heart beat being so irregular. What they do know is that the condition of her heart has deteriorated since the last test that gave a reading of 35 but they don't know if it has dropped as low as the 19 score before that. The condition of her heart is an issue as rather than beating strongly it is more in a vibrating pattern that contributes to her fluid issues as her heart is not strong enough to pump blood and fluid around her body fully.
So overall we have her in a position where her heart is not strong and if she has a cardiac arrest of any type they will not resucitate her. If their is any positive in this it is that the cardiology team is coming to visit with the aim of giving her further medication that will hopefully strengthen her heart.
I will keep you updated on the progress of her heart which is the main concern, the other area I mention yesterday is the build up of fluid around her lungs. This is taking a back seat based on the heart issues but is being tracked by her ability to breathe which unfortunately also got a bit worse during the day.
Another bit of good news is the dhiorrea seems to have stopped.
As I said I will keep you updated daily as we are in a delicate position at the moment but hopefully it will be the start of a long trek back to stable health.
Speak Soon
NEVER, NEVER, NEVER GIVE UP
Today Judy had the ultrasound on heart that I mentioned yesterday, it showed that the fluid has not built up around her heart again which is great news as she is not in a good state to undergo more draining. The downside to this is that it is tumour that has caused the heart to look enlarged, while they didn't have the prior scans to compare growth it does show sizable tumours. The other update we received is that they tried to complete a test to measure the strength of her heart but couldn't due to the heart beat being so irregular. What they do know is that the condition of her heart has deteriorated since the last test that gave a reading of 35 but they don't know if it has dropped as low as the 19 score before that. The condition of her heart is an issue as rather than beating strongly it is more in a vibrating pattern that contributes to her fluid issues as her heart is not strong enough to pump blood and fluid around her body fully.
So overall we have her in a position where her heart is not strong and if she has a cardiac arrest of any type they will not resucitate her. If their is any positive in this it is that the cardiology team is coming to visit with the aim of giving her further medication that will hopefully strengthen her heart.
I will keep you updated on the progress of her heart which is the main concern, the other area I mention yesterday is the build up of fluid around her lungs. This is taking a back seat based on the heart issues but is being tracked by her ability to breathe which unfortunately also got a bit worse during the day.
Another bit of good news is the dhiorrea seems to have stopped.
As I said I will keep you updated daily as we are in a delicate position at the moment but hopefully it will be the start of a long trek back to stable health.
Speak Soon
NEVER, NEVER, NEVER GIVE UP
Thursday, February 25, 2010
Hope It Doesn't End Up Too Long
As I haven't blogged for a while I will start from when I last wrote in detail which was the morning of Tuesday 2nd Feb.
At the time Judy was being operated on to drain fluid from around her heart, she came through the procedure a little worse for wear but the procedure was far less traumatising than the first time round. Judy really didn't start feeling better until the drain was removed on the Thursday evening by which time they had drained over 2 litres of fluid. The reason for the fluid building up is due to the melanoma being in her heart as it builds up to fight the disease within the heart. She started to feel better as we waited for advice on what would be done to stop the fluid building up in the future. It wasn't until the following Monday that we were finally advised that the plan was to cut a window in the pericardial sac. This is the sac that surrounds the heart and would allow the fluid to drain into the lung cavity.
She had this operation on the morning of Wednesday 10th Feb which happened to be the day that we moved house. This operation went well and included another drain being inserted to keep the area free of fluid while the pericardial sac tried to fuse to the heart with the help of a talc solution. Unfortunately after a couple of days of small amounts of fluid draining she had a couple of days where over 200mls drained which put her in a difficult position as the pericardial sac didn't fuse to the heart which would have resulted in less fluid being produced. This left us in a position of not knowing where we were going as the drain needed to be removed as the chance of infection was increasing each day but to much fluid was draining. Fortunately she had a 24 hour period where the fluid production dropped too next to nothing so the decision was made to remove the drain. This didn't happen until a week after it was inserted with the end result being a further 960mls was drained, while I say a week after this was an extremely difficult time for Judy as she was confined to bed for the full week it is difficult to fully understand how difficult it was.
While the drain came out on the Wednesday 17th Feb, after a couple of days recouperation the doctors didn't think it would be wise for her to come home on the Friday. By the time the new week hit and they didn't let her out on the Monday she was itching the get home as we had nearly been in the new house for just under two weeks. I feel her desire to get home was a factor behind them letting her come home on Tuesday.
So on Tuesday afternoon she finally got to see our house but unfortunately she was lacking energy and was only able to go for a quick tour before resting. She woke up the next morning feeling pretty ordinary and while we thought having a shower would make her feel better we were wrong as she felt terrible after that. It was here that the dhiorrea and vomitting started, fortunately the community nurse was visiting and following a quick call to the palliative care doctor an ambulance was on it's way to take her back to hospital. This was a horrible situation for us all but was the only option as her condition was not good as she struggled to get to and from the loo. The struggle was driven by the fact that she had been bed ridden for all up nearly 5 weeks and her breathing had deteriorated to the point we needed to have an oxygen machine delivered to the house before she came home.
On her return to hospital they gave her a full review for which they haven't solved the dhiorrea problem but did note from the CT scan she had that fluid was starting to build up around her lungs. While the doctor outlined that this could result from a number of reasons it is most likely coming from her heart. This was further backed up by the fact that her heart was enlarged on the scan which is the result of either tumour growth or fluid building up around her heart even though she had the window put in. The fluid build up is also causing concern in other areas of the body but the heart and lungs are the major concern as the feeling is her heart is weak and any fluid build up around the lungs only makes breathing more difficult. The plan is to do more testing on her heart to determine the strength of her heart plus determining if it is fluid building up again. This is the most worrying area as we have been advised that based on the strenght of her heart if she has a cardiac arrest they will not try to resucitate her due to the presence of the melanoma in her heart. The other area is the fluid around the lungs which he advised they could drain this but based on what she has been through over the last 3 weeks they would not like to do this. Fortunately the breathing difficulties can be treated with medication initially.
So overall things are not looking their best as the fluid production will more than likely not stop until the melanoma is not in her heart but she is not strong enough to continue with any chemo to reduce tumour size. While we will try to build her strength back up we are coming from a low base so have a long road ahead that is fraut with huge risks. The initial aim is to stop the runs and get Judy to the stage where she can come home successfully understanding what support would be needed to get her back to a level where she can lead as normal a life as possible.
While we have been settling into the new house and dealing with life in general I will leave these to another time as our greatest area of concern is Judy and the battle that she has faced and has ahead.
I have seen requests for prayers for which we appreciate these as well as many positive thoughts as we move through a very difficult stage.
I will leave it at that for now and hope that it brings you up to date, I can't see Judy being in a position to blog in the coming weeks so I will try to keep you all informed.
Now more than ever NEVER, NEVER, NEVER GIVE UP
At the time Judy was being operated on to drain fluid from around her heart, she came through the procedure a little worse for wear but the procedure was far less traumatising than the first time round. Judy really didn't start feeling better until the drain was removed on the Thursday evening by which time they had drained over 2 litres of fluid. The reason for the fluid building up is due to the melanoma being in her heart as it builds up to fight the disease within the heart. She started to feel better as we waited for advice on what would be done to stop the fluid building up in the future. It wasn't until the following Monday that we were finally advised that the plan was to cut a window in the pericardial sac. This is the sac that surrounds the heart and would allow the fluid to drain into the lung cavity.
She had this operation on the morning of Wednesday 10th Feb which happened to be the day that we moved house. This operation went well and included another drain being inserted to keep the area free of fluid while the pericardial sac tried to fuse to the heart with the help of a talc solution. Unfortunately after a couple of days of small amounts of fluid draining she had a couple of days where over 200mls drained which put her in a difficult position as the pericardial sac didn't fuse to the heart which would have resulted in less fluid being produced. This left us in a position of not knowing where we were going as the drain needed to be removed as the chance of infection was increasing each day but to much fluid was draining. Fortunately she had a 24 hour period where the fluid production dropped too next to nothing so the decision was made to remove the drain. This didn't happen until a week after it was inserted with the end result being a further 960mls was drained, while I say a week after this was an extremely difficult time for Judy as she was confined to bed for the full week it is difficult to fully understand how difficult it was.
While the drain came out on the Wednesday 17th Feb, after a couple of days recouperation the doctors didn't think it would be wise for her to come home on the Friday. By the time the new week hit and they didn't let her out on the Monday she was itching the get home as we had nearly been in the new house for just under two weeks. I feel her desire to get home was a factor behind them letting her come home on Tuesday.
So on Tuesday afternoon she finally got to see our house but unfortunately she was lacking energy and was only able to go for a quick tour before resting. She woke up the next morning feeling pretty ordinary and while we thought having a shower would make her feel better we were wrong as she felt terrible after that. It was here that the dhiorrea and vomitting started, fortunately the community nurse was visiting and following a quick call to the palliative care doctor an ambulance was on it's way to take her back to hospital. This was a horrible situation for us all but was the only option as her condition was not good as she struggled to get to and from the loo. The struggle was driven by the fact that she had been bed ridden for all up nearly 5 weeks and her breathing had deteriorated to the point we needed to have an oxygen machine delivered to the house before she came home.
On her return to hospital they gave her a full review for which they haven't solved the dhiorrea problem but did note from the CT scan she had that fluid was starting to build up around her lungs. While the doctor outlined that this could result from a number of reasons it is most likely coming from her heart. This was further backed up by the fact that her heart was enlarged on the scan which is the result of either tumour growth or fluid building up around her heart even though she had the window put in. The fluid build up is also causing concern in other areas of the body but the heart and lungs are the major concern as the feeling is her heart is weak and any fluid build up around the lungs only makes breathing more difficult. The plan is to do more testing on her heart to determine the strength of her heart plus determining if it is fluid building up again. This is the most worrying area as we have been advised that based on the strenght of her heart if she has a cardiac arrest they will not try to resucitate her due to the presence of the melanoma in her heart. The other area is the fluid around the lungs which he advised they could drain this but based on what she has been through over the last 3 weeks they would not like to do this. Fortunately the breathing difficulties can be treated with medication initially.
So overall things are not looking their best as the fluid production will more than likely not stop until the melanoma is not in her heart but she is not strong enough to continue with any chemo to reduce tumour size. While we will try to build her strength back up we are coming from a low base so have a long road ahead that is fraut with huge risks. The initial aim is to stop the runs and get Judy to the stage where she can come home successfully understanding what support would be needed to get her back to a level where she can lead as normal a life as possible.
While we have been settling into the new house and dealing with life in general I will leave these to another time as our greatest area of concern is Judy and the battle that she has faced and has ahead.
I have seen requests for prayers for which we appreciate these as well as many positive thoughts as we move through a very difficult stage.
I will leave it at that for now and hope that it brings you up to date, I can't see Judy being in a position to blog in the coming weeks so I will try to keep you all informed.
Now more than ever NEVER, NEVER, NEVER GIVE UP
Sunday, February 21, 2010
Sorry for the wait
Just a quick note as I have had a number of requests for an update. Overall everything is OK but we have had an extremely busy three weeks of which Judy has unfortunately been in hospital for the whole time. When I say everything is OK Judy has had her challenges for which I will fill you all in over the next couple of days but hopefully we are at the right end of them and Judy can come home tomorrow. The other thing that has taken our time is moving which is a very time consuming exercise for which we are starting to see the light at the end of the tunnel.
As I said I will write again in the coming days and once again sorry for not being able to write earlier.
NEVER, NEVER, NEVER GIVE UP
As I said I will write again in the coming days and once again sorry for not being able to write earlier.
NEVER, NEVER, NEVER GIVE UP
Monday, February 1, 2010
It's Late
I write to you from Westmead hospital at 3:30am while I am waiting for Judy to return from having more fluid drained from around her heart. Now that I have told you the end of the story I will try to connect from when Judy last wrote.
Basically not much has happened for Judy since she wrote late last week other than spending time in bed feeling shit. She has been very lethagic, hardly eaten anything because she feels so nauseous and is still suffering from stomach cramps etc, etc. While we were waiting for her to get better based on the test results from last Wednesday it didn't come and then got to the point that by Sunday she was looking fairly ordinary to the point where she looked as white as a ghost. Come Monday I knew we had to do something but I wasn't sure what so we made sure the community nurse came for a visit. Two nurses turned up this afternoon and knew all was not well as soon as they saw Judy, the end result was that an ambulance was called to bring her to Westmead where she had to go through emergency. The call for the amnulance was made around 4:15pm and she didn't get a bed in emergency until 10:30pm but atleast the wait was worthwhile as they have been able to find an answer as to why Judy has been feeling so crap. I can only hope the procedure is better than last time.
The other big items happening in our life at the moment was Matt starting big school today for which it was extremely disapointing that Judy was not able to go based on how she was feeling. She was at least able to help him get dressed as he was very excited until I said we had to go. I headed off with him and can't imagine how he felt as I had butterflys in my stomach as we arrived at the school, then I found out as the first of the tears started. I took him in and was able to stay while he settled in and while some more tears flowed he was a brave boy and made his dad very proud. I went back to pick him up at 2:30pm and he survived the day and was happy to go back the next day I just have to make sure I am home in time. He also surprised me by not losing any of his school gear.
Now the next big item is moving which is fast approaching with just over a week until we move. I got to do a bit more packing on the weekend due to some help from Di and Alex over the road looking after Hamish but I must admit I feel I am still behind schedule but we do have one more weekend. I will keep you posted as we may need to call in resources on the Monday and Tuesday next week if I haven't got it all done so feel free to put up your hands.
I would also like to take this opportunity to welcome a couple of new additions to the family, firstly Joylynn has joined us last Tuesday as our new Au Pair replacing Melissa who left before the Australia Day weekend. I would like to say welcome to Joy as she settles in and also thank Melissa hugely for her contribution over the last 4 months as she took a number of worries off our mind during a very difficult time. The other new addition is the arrival of a 16 week old black labrador puppy and while some of you may find it hard to believe we have added more complications to our lives others will know that once Judy gets an idea in her head their is no stopping her. It only follows that no wonder this cancer beast doesn't stand a chance.
I better go as I am running out of battery so sorry for the lack of a spell check or whether what I have written makes any sense at this time of the morning.
By for now and NEVER NEVER NEVER GIVE UP.
Basically not much has happened for Judy since she wrote late last week other than spending time in bed feeling shit. She has been very lethagic, hardly eaten anything because she feels so nauseous and is still suffering from stomach cramps etc, etc. While we were waiting for her to get better based on the test results from last Wednesday it didn't come and then got to the point that by Sunday she was looking fairly ordinary to the point where she looked as white as a ghost. Come Monday I knew we had to do something but I wasn't sure what so we made sure the community nurse came for a visit. Two nurses turned up this afternoon and knew all was not well as soon as they saw Judy, the end result was that an ambulance was called to bring her to Westmead where she had to go through emergency. The call for the amnulance was made around 4:15pm and she didn't get a bed in emergency until 10:30pm but atleast the wait was worthwhile as they have been able to find an answer as to why Judy has been feeling so crap. I can only hope the procedure is better than last time.
The other big items happening in our life at the moment was Matt starting big school today for which it was extremely disapointing that Judy was not able to go based on how she was feeling. She was at least able to help him get dressed as he was very excited until I said we had to go. I headed off with him and can't imagine how he felt as I had butterflys in my stomach as we arrived at the school, then I found out as the first of the tears started. I took him in and was able to stay while he settled in and while some more tears flowed he was a brave boy and made his dad very proud. I went back to pick him up at 2:30pm and he survived the day and was happy to go back the next day I just have to make sure I am home in time. He also surprised me by not losing any of his school gear.
Now the next big item is moving which is fast approaching with just over a week until we move. I got to do a bit more packing on the weekend due to some help from Di and Alex over the road looking after Hamish but I must admit I feel I am still behind schedule but we do have one more weekend. I will keep you posted as we may need to call in resources on the Monday and Tuesday next week if I haven't got it all done so feel free to put up your hands.
I would also like to take this opportunity to welcome a couple of new additions to the family, firstly Joylynn has joined us last Tuesday as our new Au Pair replacing Melissa who left before the Australia Day weekend. I would like to say welcome to Joy as she settles in and also thank Melissa hugely for her contribution over the last 4 months as she took a number of worries off our mind during a very difficult time. The other new addition is the arrival of a 16 week old black labrador puppy and while some of you may find it hard to believe we have added more complications to our lives others will know that once Judy gets an idea in her head their is no stopping her. It only follows that no wonder this cancer beast doesn't stand a chance.
I better go as I am running out of battery so sorry for the lack of a spell check or whether what I have written makes any sense at this time of the morning.
By for now and NEVER NEVER NEVER GIVE UP.
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