Quick Home Visit from Hospice
Well after I went home last sunday, the light was fixed in the toilet and eventually the other toilet was fixed as well which was quite a relief.
I carried on having more radiotherapy through my chest and back to get the canver in my shoulder blade, spine and lymph nodes and the squashing tumour around my oesophagus. They came for me at any time and not the one scheduled on my time sheet so that was a bit confusing.
I evetually moved to the cancer ward rather than the leukaemia ward as I could not see my children on that ward. Ended up in the last bay which I'd never been in before and opposite 2 ladies who were still in from my last hospital sat at the beginning of june!! Both looked much worse which is scary.
Had my last rads on thursday but only just as they nearly forgot about me!!! Then on friday got transferred to the hospice. Am in a 4 bedded ward with lovely views out of the window but will take time to get used to the routines etc and not being able to make tea when I want!! On the plus side they do give out alcohol with meals!!! Will go to my usual day care on tuesday so don't have the worry of driving there and parking!!
Visiting times are open except for between 1-2pm so glad about that as need afternoon sleep.
Have had a lot of visitors which has been lovely and now that I'm in the hospice I can have flowers as well!! They are considered an infection risk on the wards so hope to get some flowers as had just got some when got taken into hospital so missed them. Have got 2 helium balloons and some paper flowers Laura made so got something else to look at.
Had a rather frightening conversation with the registrar at the hospice yesterday regarding whether I wanted to be resuscitated. I suppose I should have seen that coming but hadn't. I said yes for the moment as said to AJ I would not die suddenly and so even if they can only keep me alive for a few hours at least I would not have let him down.
I suppose with the fluid round my heart and the tumour pressing on both sides of my heart and the oesophagus it is not a very impressive picture of life.
Before I left the hospital, I had a chat with the senior oncologist, he was quite confident that the tumour would shrink with the rads but the next week or so the pain and swallowing will worsen. He is keen for me to be off chemo as long as possible but will give me taxol or something else. He doesn't think lapatinab/tykerb will be allowed by NICE as the costs outway the length of life it gives which is rather disappointing but not surprising considering the length of time the trials went on for. It has been licenced which means in theory you can get it but the NHS is supposed to use only drugs approved for by NICE so lets hope it doesn't turn into another herceptin saga.
Off to do other things now.
Well after I went home last sunday, the light was fixed in the toilet and eventually the other toilet was fixed as well which was quite a relief.
I carried on having more radiotherapy through my chest and back to get the canver in my shoulder blade, spine and lymph nodes and the squashing tumour around my oesophagus. They came for me at any time and not the one scheduled on my time sheet so that was a bit confusing.
I evetually moved to the cancer ward rather than the leukaemia ward as I could not see my children on that ward. Ended up in the last bay which I'd never been in before and opposite 2 ladies who were still in from my last hospital sat at the beginning of june!! Both looked much worse which is scary.
Had my last rads on thursday but only just as they nearly forgot about me!!! Then on friday got transferred to the hospice. Am in a 4 bedded ward with lovely views out of the window but will take time to get used to the routines etc and not being able to make tea when I want!! On the plus side they do give out alcohol with meals!!! Will go to my usual day care on tuesday so don't have the worry of driving there and parking!!
Visiting times are open except for between 1-2pm so glad about that as need afternoon sleep.
Have had a lot of visitors which has been lovely and now that I'm in the hospice I can have flowers as well!! They are considered an infection risk on the wards so hope to get some flowers as had just got some when got taken into hospital so missed them. Have got 2 helium balloons and some paper flowers Laura made so got something else to look at.
Had a rather frightening conversation with the registrar at the hospice yesterday regarding whether I wanted to be resuscitated. I suppose I should have seen that coming but hadn't. I said yes for the moment as said to AJ I would not die suddenly and so even if they can only keep me alive for a few hours at least I would not have let him down.
I suppose with the fluid round my heart and the tumour pressing on both sides of my heart and the oesophagus it is not a very impressive picture of life.
Before I left the hospital, I had a chat with the senior oncologist, he was quite confident that the tumour would shrink with the rads but the next week or so the pain and swallowing will worsen. He is keen for me to be off chemo as long as possible but will give me taxol or something else. He doesn't think lapatinab/tykerb will be allowed by NICE as the costs outway the length of life it gives which is rather disappointing but not surprising considering the length of time the trials went on for. It has been licenced which means in theory you can get it but the NHS is supposed to use only drugs approved for by NICE so lets hope it doesn't turn into another herceptin saga.
Off to do other things now.
Labels: hospice, radiotherapy, resuscitation
posted by dippykate @ 2:56 PM
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