We've had 2 unsuccessful trips out to go crab fishing. No matter how we try to judge the weatheer, it keeps raining when we get to the place to crab fish - it is so frustrating and also smelly having bacon bits in the car!!!
i actually went swinming for the first time in months. I thought my blood count was probably not too low and it was wonderful. I mainly trod water and did a little 'ladylike' breaststroke as in keeping my head out of the water so i wouldn't swallow or bretahe in any of the water incase of infection. I did have to wet my hair as the goggles pushed my hair into a very Jeremy Clarkson style. AJ is so confident in jumping in and touching the botom of the deep end althoug he can only seem to swim about 5 m before he neeeds to hold onto the side. I'm sure he can do it but he just has got into the habit of doing this. I then , of course, spent the afternoon in bed!!!
I was very surprised to get a copy of my referral letter to the Marsden and it was not a pleasant surprise. furstly, i find out that my initial biopsies showed necrotic ie rotting and dead tissue. If I'd known that I would never would have had chemo first and then I find that I was 'reluctant to start taxotere' - excuse me Mr Oncologist but it was you who was reluctant to start taxotere and it was only when I developed the skin spread so quick did he agree for me to have that. Then I find he ends the letter with 'i guess she is not eligible for the tykerb trial as there is no progression!! So in that case, what is this extension in my rib and what is happening in my sternum and behind my aorta then!!
After posting on my support forums and speaking to the hospice nurse, I am now going to the hospital with a friend off the forum to challenge this letter's contents and to get him to phone the marsden and speed things up and to investigate this strnum thing. He also doesn't mention the fact that I am so wheezy continually. I've tried ventolin - just speeds my heart up. I've taken anti-histamine - ummm might help a little but not much. I've even resorted to lorazepam to see if it is stress - that just makes me sleep and have trouble co-ordinating myself and my speech when I wake up.
It doesn't help that when I asked hubby what my breathing was like at night and he said it scares him as I'm so wheezy and noisy he doesn't know if I will keep breathing through the night!!!
Wish me luck for thursday!!
i actually went swinming for the first time in months. I thought my blood count was probably not too low and it was wonderful. I mainly trod water and did a little 'ladylike' breaststroke as in keeping my head out of the water so i wouldn't swallow or bretahe in any of the water incase of infection. I did have to wet my hair as the goggles pushed my hair into a very Jeremy Clarkson style. AJ is so confident in jumping in and touching the botom of the deep end althoug he can only seem to swim about 5 m before he neeeds to hold onto the side. I'm sure he can do it but he just has got into the habit of doing this. I then , of course, spent the afternoon in bed!!!
I was very surprised to get a copy of my referral letter to the Marsden and it was not a pleasant surprise. furstly, i find out that my initial biopsies showed necrotic ie rotting and dead tissue. If I'd known that I would never would have had chemo first and then I find that I was 'reluctant to start taxotere' - excuse me Mr Oncologist but it was you who was reluctant to start taxotere and it was only when I developed the skin spread so quick did he agree for me to have that. Then I find he ends the letter with 'i guess she is not eligible for the tykerb trial as there is no progression!! So in that case, what is this extension in my rib and what is happening in my sternum and behind my aorta then!!
After posting on my support forums and speaking to the hospice nurse, I am now going to the hospital with a friend off the forum to challenge this letter's contents and to get him to phone the marsden and speed things up and to investigate this strnum thing. He also doesn't mention the fact that I am so wheezy continually. I've tried ventolin - just speeds my heart up. I've taken anti-histamine - ummm might help a little but not much. I've even resorted to lorazepam to see if it is stress - that just makes me sleep and have trouble co-ordinating myself and my speech when I wake up.
It doesn't help that when I asked hubby what my breathing was like at night and he said it scares him as I'm so wheezy and noisy he doesn't know if I will keep breathing through the night!!!
Wish me luck for thursday!!
Labels: rain and letters
posted by dippykate @ 8:33 PM
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