I must have totally overdone it on holiday as I only woke up at 1115am on sunday morning and that was because Woody was concerned that neither hubby or I had surfaced!! I immediatley did 2 loads of washing and then decided I felt so awful and my mouth just burned throughout so in the end I phoned the chemo helpine and got told to go to the ward. I was obviously not in the best frame of mind as I just thought they ould take some blood and give me some mouthwash and then go home. WRONG!!! They wanted to admit me and as my blood came back showing I was dehydrated and anaemic , I needed intravenous fluids and 2 units of blood. It took ages for the mouthwash stuff to be sorted and for the doctor to write up all my painkillers etc and he still missed a lot out.
As the car was in the carpark, I had to get hubby to come over so he could bring me my clothes etc and collect the car. Luckily, my friend and her husband came over and she packed etc and looked after hers and our children so that her husband could drop mine off to give me my stuff and collect the car.
I was in the ward I liked but in the place that overlooks where the dustbin men come and the crusher is. It was very noisy and they started work at 545am and often we didn't get our night tablets till 1145pm so had very little sleep.
Although my care was fine, it was very upsetting to see the elderly and frail and confused lady opposite me getting such little care. The nurses never checked she took her tablets so were often left there until the next drug round. She also had a sore mouth but never used her mouth washes as she kept forgetting what to do so in the end as I had the same as her, evrytime I did my mouth I would get her to do hers. Isn't it terrible that such basic care is missed and so dangerous not to know when or if she took her medications.
It gave me a lot of time to rest and I got on quite well with my life story and cross stitch.
I came home on tuesday lunchtime via my friend bringing me home to find the suitcase from our holiday still unpacked and the dry washing oin piles on the settee. I was o upset and tearful. Anyway, my friend helped me tidy up and she did loads of ironing.
It was our wedding anniversary so we ordered a chinese takeaway which was disastrous as i could not swallow it and regurgitated all night upsetting Laura particulary and really all of us.
The next day when I woke up at 9am I felt terrible. I had a bad headache, I was sicxk and felt hotophobic. I got my friend from over the road to come in and then another friend arrived to help with cleaning and washing and looking after me. Then another friend came so she gave me a cold compress and took me to the other hospital to see the consultant radiologist. After all this confusion in the hospital about how bad my bony spread was now and how rsiky radiotherapy was I did not want to miss this appointment. I must have looked a sorry sight with a cold compress on my forehead, dark glasses and her massaging my neck. It did help though. We waited over 2 hours to see the consultant who told me that now 3 chest vertebrae had cancer in as well as my left shoulder blade and in my ribs. We had a good discussion about when to have the rads as the rads to my oesophagus will mean that I won't be able to eat properly for 2 -4 weeks so trying to tie that in with the school holidays as well.
Raher worried about this especiallyas 2 women who have had this type of rads to the oesophagus said it was extremely painful and they couldn't swallow or talk for about 4 weeks. So think I will need to alter my plans and have only 1 more gem/carbo next week and then rads and then that gives me time to recover before the school hols begin. The only problem being if my breathing doesn't hold out for that long as it would be about 10 weeks till they restart school and the me I wanted to start taxol. I've never managed to be off chemo for that long before so can see may need some taxol before the 2 weeks holiday with hubby etc in mid august. What a dilemma!!
The next dilemma is to decide on hymns, a scripture reading and whether to use the video service offered free to the crematorium so that people who can't make the service can still see it via a password protected video link to the PC. Does that sound odd to you? Would you watch it if you couldn't make the service?
All feels surreal and my not having this last gem/carbo I feel I'm shortening my life but hopefully the quality will be better as really can only swallow soups and milk puddings at the moment and the children are getting so distressed by my constant regugitation. This all seems so unfair.
I've spoken to the social worker and Simon Says and will see the hospice nurse on monday as want to see if swallowing and pain is so bad whether I can go into the hospice rather than the hospital if I can't cope at home.
All in all a very worrying time but at least I know why my shoulders are so painful now.
Kate
As the car was in the carpark, I had to get hubby to come over so he could bring me my clothes etc and collect the car. Luckily, my friend and her husband came over and she packed etc and looked after hers and our children so that her husband could drop mine off to give me my stuff and collect the car.
I was in the ward I liked but in the place that overlooks where the dustbin men come and the crusher is. It was very noisy and they started work at 545am and often we didn't get our night tablets till 1145pm so had very little sleep.
Although my care was fine, it was very upsetting to see the elderly and frail and confused lady opposite me getting such little care. The nurses never checked she took her tablets so were often left there until the next drug round. She also had a sore mouth but never used her mouth washes as she kept forgetting what to do so in the end as I had the same as her, evrytime I did my mouth I would get her to do hers. Isn't it terrible that such basic care is missed and so dangerous not to know when or if she took her medications.
It gave me a lot of time to rest and I got on quite well with my life story and cross stitch.
I came home on tuesday lunchtime via my friend bringing me home to find the suitcase from our holiday still unpacked and the dry washing oin piles on the settee. I was o upset and tearful. Anyway, my friend helped me tidy up and she did loads of ironing.
It was our wedding anniversary so we ordered a chinese takeaway which was disastrous as i could not swallow it and regurgitated all night upsetting Laura particulary and really all of us.
The next day when I woke up at 9am I felt terrible. I had a bad headache, I was sicxk and felt hotophobic. I got my friend from over the road to come in and then another friend arrived to help with cleaning and washing and looking after me. Then another friend came so she gave me a cold compress and took me to the other hospital to see the consultant radiologist. After all this confusion in the hospital about how bad my bony spread was now and how rsiky radiotherapy was I did not want to miss this appointment. I must have looked a sorry sight with a cold compress on my forehead, dark glasses and her massaging my neck. It did help though. We waited over 2 hours to see the consultant who told me that now 3 chest vertebrae had cancer in as well as my left shoulder blade and in my ribs. We had a good discussion about when to have the rads as the rads to my oesophagus will mean that I won't be able to eat properly for 2 -4 weeks so trying to tie that in with the school holidays as well.
Raher worried about this especiallyas 2 women who have had this type of rads to the oesophagus said it was extremely painful and they couldn't swallow or talk for about 4 weeks. So think I will need to alter my plans and have only 1 more gem/carbo next week and then rads and then that gives me time to recover before the school hols begin. The only problem being if my breathing doesn't hold out for that long as it would be about 10 weeks till they restart school and the me I wanted to start taxol. I've never managed to be off chemo for that long before so can see may need some taxol before the 2 weeks holiday with hubby etc in mid august. What a dilemma!!
The next dilemma is to decide on hymns, a scripture reading and whether to use the video service offered free to the crematorium so that people who can't make the service can still see it via a password protected video link to the PC. Does that sound odd to you? Would you watch it if you couldn't make the service?
All feels surreal and my not having this last gem/carbo I feel I'm shortening my life but hopefully the quality will be better as really can only swallow soups and milk puddings at the moment and the children are getting so distressed by my constant regugitation. This all seems so unfair.
I've spoken to the social worker and Simon Says and will see the hospice nurse on monday as want to see if swallowing and pain is so bad whether I can go into the hospice rather than the hospital if I can't cope at home.
All in all a very worrying time but at least I know why my shoulders are so painful now.
Kate
posted by dippykate @ 4:13 PM
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