Unfortunately I am still in hospital and very unimpressed with the idea of still being here. Kerry saw me this morning and wanted me to stay in until Monday so that they can keep a close eye on me. I eventually managed to convince him to let me go home tomorrow if I promise to keep an eye on my temperature and come in if I have any troubles and see both Kerry and the cardiologist on Tuesday.
The cardiologist saw me this morning and he said that the fluid on my heart and lungs would not go away by itself so I had to start on two lots of heart medication today. One is lasix which I am used to having through IV but now I will have Lasix tablets to take at home. I cannot remember the name of the other one. I also have to see the cardiologist regularly until the fluid all goes away.
Unfortunately I landed a two share room instead of a single room this time. The lady I am sharing with is in her mid sixties and drives me insane. She talks so loud when she is on the phone that I had trouble hearing the cardiologist talking to me this morning! The other thing is she constantly wants to talk. I had turned all of my lights out and was tucked up in bed last night and she kept chatting away. Then this morning as soon as she heard me roll over and stretch the talking started again. Even my one word answers, grumbled out of my mouth did not give her the picture that perhaps I was trying to sleep!!
Hopefully tomorrow they will let me go home and I don't plan on coming back!
Friday, 6 July 2007
Thursday, 5 July 2007
Home for a short visit
I did manage to get home on Monday but unfortunately I landed back in here last night.
Monday was so exciting. Kerry had told me over the weekend that as far as they could tell from the scans there was no more tumours left and that was just fantastic news. I still have to have radiation treatment but at least we know that the tumours have already gone so the radiation is just to be sure and to get any rogue cells that are remaining. So home I went on Monday. It was just great to be at home with Cam and the kids. My energy levels were pretty low but that was to be expected so I just had to spend a lot of time resting in bed or on the couch. On Tuesday we went with mum, Nat, Jane and her kids and Tiernan, Arielle and I to a play centre. The kids had an absolute ball. Arielle even had a go on the slippery slides and Tiernan was making mum, Nat and I take turns at climbing through the play structure with him and then going down the big slippery slide. I was exhausted by the end but it was worth it. On Wednesday we had a quiet day at home and the boys finished building the sandpit in the backyard. I managed to get a little bit of gardening done (Tiernan and I planted a little herb and vegie garden earlier in the year).
Late yesterday afternoon I started getting pains in my heart and they would not ease so I came in to the Mater Emergency Centre. They did a few tests and it turns out I have fluid on my heart and lungs. I also had a temperature (I had to sheepishly admit to not taking my temp since being home - a big no, no as I am supposed to be taking it several times a day and coming into hospital as soon as I get a temp). So they have stuck me on some IV antibiotics to combat whatever infection is causing the temp and then I have had a heap of tests on my heart to try to work out what is going wrong with it. They call it heart failure but it is not as bad as it sounds it just means that my heart is not doing it's job of pumping fluid out properly and therefore my heart is retaining too much fluid and then the fluid overload has leaked into my lungs. It is not really too painful but more uncomfortable than anything else. My emotional state is probably of more concern as I am so peeved that I am back in hospital - I so do not want to be here. Tomorrow I should be seeing the cardiologist and hopefully then I will find out what is going on and what they plan on doing about it and then hopefully I can get out of here.
Monday was so exciting. Kerry had told me over the weekend that as far as they could tell from the scans there was no more tumours left and that was just fantastic news. I still have to have radiation treatment but at least we know that the tumours have already gone so the radiation is just to be sure and to get any rogue cells that are remaining. So home I went on Monday. It was just great to be at home with Cam and the kids. My energy levels were pretty low but that was to be expected so I just had to spend a lot of time resting in bed or on the couch. On Tuesday we went with mum, Nat, Jane and her kids and Tiernan, Arielle and I to a play centre. The kids had an absolute ball. Arielle even had a go on the slippery slides and Tiernan was making mum, Nat and I take turns at climbing through the play structure with him and then going down the big slippery slide. I was exhausted by the end but it was worth it. On Wednesday we had a quiet day at home and the boys finished building the sandpit in the backyard. I managed to get a little bit of gardening done (Tiernan and I planted a little herb and vegie garden earlier in the year).
Late yesterday afternoon I started getting pains in my heart and they would not ease so I came in to the Mater Emergency Centre. They did a few tests and it turns out I have fluid on my heart and lungs. I also had a temperature (I had to sheepishly admit to not taking my temp since being home - a big no, no as I am supposed to be taking it several times a day and coming into hospital as soon as I get a temp). So they have stuck me on some IV antibiotics to combat whatever infection is causing the temp and then I have had a heap of tests on my heart to try to work out what is going wrong with it. They call it heart failure but it is not as bad as it sounds it just means that my heart is not doing it's job of pumping fluid out properly and therefore my heart is retaining too much fluid and then the fluid overload has leaked into my lungs. It is not really too painful but more uncomfortable than anything else. My emotional state is probably of more concern as I am so peeved that I am back in hospital - I so do not want to be here. Tomorrow I should be seeing the cardiologist and hopefully then I will find out what is going on and what they plan on doing about it and then hopefully I can get out of here.
Thursday, 28 June 2007
Yeah - No More Chemo!!!!!
Yes the heading is right - as long as there is no new growth anywhere, I am finished with chemo. I have to have radiation but that is supposed to be a walk in the park compared to a double stem cell transplant! The timing is good as I am totally sick of it all. I feel like I can barely remember what it is like to feel well. The past few days I have felt miserable and sorry for myself, wishing there was some way to take a break from chemo side effects! But unfortuntely once the poison is in my veins there is no cure but time. I am improving, although I am still plagued by tummy troubles and my cold so Kerry has changed my release date to next week - hopefully early in the week.
On Tuesday I had a lovely day. Cam, Tiernan, Arielle, mum and Nat all came in to visit and it was just wonderful. It really lifted my spirits. Yesterday I had a lovely visit with Cam and Tiernan. Tiernan and I had a lovely cuddle in bed for ages. We were looking at photos on a digital photo frame that Nat bought me. Tiernan would name the people he saw in the photos. There was a photo of him as a baby and I was holding him. He said to me "Oh baby Tiernan and who is that?". It took me a minute to realise that I had long hair in the photo and Tiernan had just turned 2 the last time I had hair so it was probably reasonable that he did not know who it was! He talked to me a lot about when I was coming home and when I would be better. Those conversations always break my heart - it is so much for a 3 year old to understand.
This morning I woke up to Cam rubbing my hand! It was a lovely surprise. I had woken up earlier and had breakfast and then felt miserable so climbed under the covers and went back to sleep. I did not know that Cam was coming in so it was a lovely way to wake up from my snooze!
The weather in Brisbane is freezing at the moment and I don't think the hospital a/c has got it right because I am freezing in my room. Part of the problem is my lack of hair as my head is freezing more than anything else on my body. The ward has lovely warm blankets and I am constantly wrapping them around me!
On Tuesday I had a lovely day. Cam, Tiernan, Arielle, mum and Nat all came in to visit and it was just wonderful. It really lifted my spirits. Yesterday I had a lovely visit with Cam and Tiernan. Tiernan and I had a lovely cuddle in bed for ages. We were looking at photos on a digital photo frame that Nat bought me. Tiernan would name the people he saw in the photos. There was a photo of him as a baby and I was holding him. He said to me "Oh baby Tiernan and who is that?". It took me a minute to realise that I had long hair in the photo and Tiernan had just turned 2 the last time I had hair so it was probably reasonable that he did not know who it was! He talked to me a lot about when I was coming home and when I would be better. Those conversations always break my heart - it is so much for a 3 year old to understand.
This morning I woke up to Cam rubbing my hand! It was a lovely surprise. I had woken up earlier and had breakfast and then felt miserable so climbed under the covers and went back to sleep. I did not know that Cam was coming in so it was a lovely way to wake up from my snooze!
The weather in Brisbane is freezing at the moment and I don't think the hospital a/c has got it right because I am freezing in my room. Part of the problem is my lack of hair as my head is freezing more than anything else on my body. The ward has lovely warm blankets and I am constantly wrapping them around me!
Monday, 25 June 2007
Continuing to do well
I had a CT scan this morning (I had some numbness in my left hand) and the results are in and all is very good. I don't know the exact size of what is left however Kerry said he was very pleased with the results and that the chemo has definitely worked. I will still have another CT in 2 weeks as the chemo will still be working away at the tumours.
My counts today were still good - my platelets were low but they are always the last to recover. If things continue to go this well Kerry said I could be out in a few days which is fantastic.
My counts today were still good - my platelets were low but they are always the last to recover. If things continue to go this well Kerry said I could be out in a few days which is fantastic.
Sunday, 24 June 2007
Bye bye eyelashes
This morning I had an eyelash in my eye. I looked in the mirror to take it out and was mortified to see that I had actually lost nearly all of my eyelashes. I am not even sure when it happened - they have all just gone!! My eyebrows have been diminishing slowly as well and there is not much of them left anymore either! Oh don't you just love chemo.
I am on day 12 post transplant and can report that my white cells and neutrophils have recovered and are now within normal range. My platelets are still pathetic (12 when normal is 150 - 400) so I am continuing to have platelet transfusions. I am still swollen like a balloon and my weight was 56.5kg yesterday. They gave me a big dose of Lasix and today I am 55kg. The fluid retention is revolting as my skin is so stretched that any movements hurt. Hopefully soon my heart will start working properly and get rid of the excess fluid. The diarhorea is still persisting unfortunately so I am quite sore. I have been resting a lot as I am just perpetually tired. I will be having another CT in about 2 weeks and that will tell us the status of the tumours and then Kerry will decide what to do next.
I finally decided on a name for the charity - it is "Mummy's Wish". I am currently in the process of registering the charity and doing all of the paperwork to set it up. We have sold quite a few entertainment books to get it going which has been exciting. The next project is procuring items for the charity auction that we will hold later in the year. This is something I feel really passionate about and it is such a nice feeling to know that I am going to make a difference.
I am on day 12 post transplant and can report that my white cells and neutrophils have recovered and are now within normal range. My platelets are still pathetic (12 when normal is 150 - 400) so I am continuing to have platelet transfusions. I am still swollen like a balloon and my weight was 56.5kg yesterday. They gave me a big dose of Lasix and today I am 55kg. The fluid retention is revolting as my skin is so stretched that any movements hurt. Hopefully soon my heart will start working properly and get rid of the excess fluid. The diarhorea is still persisting unfortunately so I am quite sore. I have been resting a lot as I am just perpetually tired. I will be having another CT in about 2 weeks and that will tell us the status of the tumours and then Kerry will decide what to do next.
I finally decided on a name for the charity - it is "Mummy's Wish". I am currently in the process of registering the charity and doing all of the paperwork to set it up. We have sold quite a few entertainment books to get it going which has been exciting. The next project is procuring items for the charity auction that we will hold later in the year. This is something I feel really passionate about and it is such a nice feeling to know that I am going to make a difference.
Wednesday, 20 June 2007
Yippee Counts are recovering
Yippee my counts are recovering - I am Day 8 today and my white cell count is 0.6 and my neutrophils are 0.26!!! Yeah, yeah, yeah!! I am feeling heaps better this morning as well. Life is just going to get better from here on. All of the prayers are certainly working.
Tuesday, 19 June 2007
I look like a balloon
I currently look like someone has blown me up like a balloon. I have a lot of fluid retention with my weight hovering around 53kg to 56kg which means I am carrying around 25% more weight than usual (45kg is my usual weight). My skin feels tight and stretched and all of the excess fluid is quite painful to touch. The reason for the fluid retention is that the chemo drugs put a lot of strain on your heart and it struggles to get rid of all of the additional fluids I am receiving - I am on 3 different IV antibiotics, IV potassium, IV magnesium, artificial feeding (TPN), albumen (a blood product), blood transfusions and platelet transfusions. So each day I am pumped with litres of fluids in addition to what I am orally consuming (lots because believe it or not even with all of the fluids being pumped into me I am constantly thirsty!!). So during the day I am regularly pumped with Lasix to keep the fluid retention under control.
I had a few dramas with my heart over the weekend and I had to be connected to a wireless ECG machine for a few days. It was such an amazing little machine. All the dots were connected to me and I had this little box that transmitted data wirelessly to the Coronary Care Unit so that they could closely monitor me. The whole medical world continues to fascinate me. I had been having chest pains of various sorts for a few days and then on Saturday night I had some more and they did a blood test. When your heart goes into distress it releases enzymes into your blood. The blood test results on Saturday night showed those enzymes in my blood which is why I had to be monitored. It was quite funny actually as on Sat night I went to bed at 8pm. At 9.30pm Dr Hill walked into my room and turned the lights on and started talking to me about the problems with my heart. At this point I did not know that my ECG from earlier in the night was not normal and I did not know about the blood test results, so I was quite confused about what was going on!! I had to get my nurse to reexplain everything once I woke up a bit more!!
I am now off the heart monitor as the pains have stopped and the ECGs are now normal. I have a little fluid around my heart but it is nothing to be concerned with as it should fix itself as I get better.
Unfortunately the diarrhoea has hit pretty hard again and I have a sore behind again. It is not as bad as last time though which is good. This time it seems to be my mouth and throat that are causing the most pain. Even swallowing water feels like razor blades. I am on an oral anaethestic that eases a little of the pain. I also resorted to having a Fentinyl patch and that takes the edge off everything.
I am on day 7 today and my counts are still 0 so I am not sure I will be able to match the last count recovery of 8 days. I suspect this time it will be around the 10 to 14 days.
The bronchoscopy results did not show any signs of infection in my lungs. Once I have recovered from this stem cell transplant I will have another CT and PET scan and hopefully the results will be good. Kerry said not to worry about any of that at the moment and to just focus on recovering.
My moods have been very up and down lately with the down part usually the morning and the up is the afternoon. When I first wake up in the morning I usually feel miserable due to everything hurting or just feeling off. It then takes me hours to have breakfast and get myself out of bed and showered. It is usually this time of day where I feel I cannot do it anymore. The next thought is always realising I don't have a choice - the chemo making me feel like this has already been given so I just have to ride the wave until I recover! Poor Cam then gets a phone call from me moping about how miserable I feel. He has been great with letting me vent all of my frustrations with being sick and then managing to turn my mood around a little with antics that the kids have done. We have had some really great family visits and that always helps my moods. It is hard to feel sick or miserable when Tiernan and Arielle are about. Poor little Arielle has bronchitus so we cannot see each other for a few days.
Enough of my rambling for the night - it is time I went to sleep. This is the first time in days that I am awake after 9pm!
I had a few dramas with my heart over the weekend and I had to be connected to a wireless ECG machine for a few days. It was such an amazing little machine. All the dots were connected to me and I had this little box that transmitted data wirelessly to the Coronary Care Unit so that they could closely monitor me. The whole medical world continues to fascinate me. I had been having chest pains of various sorts for a few days and then on Saturday night I had some more and they did a blood test. When your heart goes into distress it releases enzymes into your blood. The blood test results on Saturday night showed those enzymes in my blood which is why I had to be monitored. It was quite funny actually as on Sat night I went to bed at 8pm. At 9.30pm Dr Hill walked into my room and turned the lights on and started talking to me about the problems with my heart. At this point I did not know that my ECG from earlier in the night was not normal and I did not know about the blood test results, so I was quite confused about what was going on!! I had to get my nurse to reexplain everything once I woke up a bit more!!
I am now off the heart monitor as the pains have stopped and the ECGs are now normal. I have a little fluid around my heart but it is nothing to be concerned with as it should fix itself as I get better.
Unfortunately the diarrhoea has hit pretty hard again and I have a sore behind again. It is not as bad as last time though which is good. This time it seems to be my mouth and throat that are causing the most pain. Even swallowing water feels like razor blades. I am on an oral anaethestic that eases a little of the pain. I also resorted to having a Fentinyl patch and that takes the edge off everything.
I am on day 7 today and my counts are still 0 so I am not sure I will be able to match the last count recovery of 8 days. I suspect this time it will be around the 10 to 14 days.
The bronchoscopy results did not show any signs of infection in my lungs. Once I have recovered from this stem cell transplant I will have another CT and PET scan and hopefully the results will be good. Kerry said not to worry about any of that at the moment and to just focus on recovering.
My moods have been very up and down lately with the down part usually the morning and the up is the afternoon. When I first wake up in the morning I usually feel miserable due to everything hurting or just feeling off. It then takes me hours to have breakfast and get myself out of bed and showered. It is usually this time of day where I feel I cannot do it anymore. The next thought is always realising I don't have a choice - the chemo making me feel like this has already been given so I just have to ride the wave until I recover! Poor Cam then gets a phone call from me moping about how miserable I feel. He has been great with letting me vent all of my frustrations with being sick and then managing to turn my mood around a little with antics that the kids have done. We have had some really great family visits and that always helps my moods. It is hard to feel sick or miserable when Tiernan and Arielle are about. Poor little Arielle has bronchitus so we cannot see each other for a few days.
Enough of my rambling for the night - it is time I went to sleep. This is the first time in days that I am awake after 9pm!
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