After the high of saturday, sunday felt a bit odd.
I had been fighting off a chest infection but sunday night it just started with avengeance but I buried my head in the sand this time as I was coughing up blood and couldn't admit it. Mondday, I saw the district nurse about my toe who was concerned it was still infected and told me to see the GP. I saw an inexperienced locul who was worried about 'overloading' my liver even though all my liver function tests were fine. She would only give me half strength antibiotics and somehow forgot to mention my chest!! I'm usually good at asking for things and don't normally forget soemthing as important as coughing blood up but she just confused me about my liver. Tuesday, the infection in my toe had grown so I phoned the hospital who told me to up the dose by 50%.
wednesday, my chest was really bad and toe still not better so saw GP who gave me stronger antibiotics for my toe and chest. Within 24 hours, my chest felt better but not much improvement in my toe.
Thursday, I still felt really ill but had appointment at oncology. When I arrived I burst into tears and got immediate attention and was ushered off into thenurse practitioners room and saw the onc immediately. Don't think I'd get away with it every week but that really helped. He thought, like I did, that my chest was better but he was not happy for me to restart chemo due to the infections and is booking a ct scan so we can see if anything shows as still no sign of mri date. He wanted to se me in 2 weeks time as then I would have seen the neurologist and should have had teh ct by then. It seemed a good idea at the time but now I've realised it will be 5 weeks without herceptin so will need loading dose again and no bone building drugs plus, it will have given the cancer time to be be reactive and grow again so sure this scanwill look worse tah if had it whilst still on chemo.
Saw the occupational therapist who has given me a lot of things to help me as there is so much you can't do without the use of your fingers.
Hubby took our friends to the airport at 230am friday morning and came back about 630am. He then went to bed and woke up about 1130am feeling dizzy and sick so ended up packing him off so I wouldn't catch it.
I had a phone call from the special needs co-ordinator to say that the ELSAs and staff were finding it emotionally difficult to cope with our situation so she had phoned the hospice in a non named basis and had arranged for the social worker to come to their inset day on 29th for advice and support. I would have thought that the ELSAs should have been getting supervision from the special needs co-ordinator or the school counsellor and I know the school counsellor gets supervision. It made me feel as if I'm not welcome in school incase I upset the staff!!! Well, that's tough - if I can go into school then I will and it is up to the school to get their own mental health sorted out!!! I gave the school permission to contact the social worker and told them who I work with.
I then had a phone call from the social worker who was concerned that the school weren't coping so she will go in on that monday but is coming to see us this monday and I will tell the children my prognosis this monday and then she will come round to mop up.
saturday - a friend did my food shopping and took AJ to a party and back again so that really helped. My sister-in-law cooked the most fantastic spag bol so a big thank you there. I always enjoy other people's spag bol so I do really enjoy the spag bols that other people cook for me as well!!!
Sunday - Hubby returned -very tired still.
Monday - first day of half term!!! I'm used to facilitating groups but not my own family!!! i used some of the worksheets from 'When a relative has a serious illness'. It was very interesting seeing who they would go to for help, what my illness has meant in good and bad ways and about how angry we all are and how if you worry, you get other pains so they all drew on my badly drawn pictures about the headaches and tummy pains they all get. Laura was very tearful and AJ just hugged blankie but it was a relief taht they knew and we could talk about it. The last few months I've felt they have known but nobody wanted to ask or admit it.
Would you believe just after I'd said I wouldn't live for long, Laura suddenly realised that Snowy the guinea pig was still in her hutch with all the night covers on so she went out and found Snowy cold and semi-conscious so again got hysterical. we managed to warm her up and cuddled her so when the social worker arrrived she had that to deal with as well as me.
The social worker was brilliant with them and they were very honest back and she is seeing us next week so we can talk about how we can work out the anger side.
Later, that afternoon. Hubby and Laura took Snowy to the vets and Laura made the decision to have her put to sleep as her prognosis was so poor and she was suffering. Poor Laura - she seems to have to make decisions or do things that 10 yr olds shouldn't have to. Poor Laura couldn't eat for the rest of the day and cried in her sleep once she eventually settled. Promised her new guinea pigs.
Tuesday -went to see new guinea pigs but need to get hutch properly cleaned etc. Laura much happier now she knows we are getting new pets. Mum also arrived which was a relief as hadn't realised how tired I'd got during hubby's absence and 2 days of half term!!
I had been fighting off a chest infection but sunday night it just started with avengeance but I buried my head in the sand this time as I was coughing up blood and couldn't admit it. Mondday, I saw the district nurse about my toe who was concerned it was still infected and told me to see the GP. I saw an inexperienced locul who was worried about 'overloading' my liver even though all my liver function tests were fine. She would only give me half strength antibiotics and somehow forgot to mention my chest!! I'm usually good at asking for things and don't normally forget soemthing as important as coughing blood up but she just confused me about my liver. Tuesday, the infection in my toe had grown so I phoned the hospital who told me to up the dose by 50%.
wednesday, my chest was really bad and toe still not better so saw GP who gave me stronger antibiotics for my toe and chest. Within 24 hours, my chest felt better but not much improvement in my toe.
Thursday, I still felt really ill but had appointment at oncology. When I arrived I burst into tears and got immediate attention and was ushered off into thenurse practitioners room and saw the onc immediately. Don't think I'd get away with it every week but that really helped. He thought, like I did, that my chest was better but he was not happy for me to restart chemo due to the infections and is booking a ct scan so we can see if anything shows as still no sign of mri date. He wanted to se me in 2 weeks time as then I would have seen the neurologist and should have had teh ct by then. It seemed a good idea at the time but now I've realised it will be 5 weeks without herceptin so will need loading dose again and no bone building drugs plus, it will have given the cancer time to be be reactive and grow again so sure this scanwill look worse tah if had it whilst still on chemo.
Saw the occupational therapist who has given me a lot of things to help me as there is so much you can't do without the use of your fingers.
Hubby took our friends to the airport at 230am friday morning and came back about 630am. He then went to bed and woke up about 1130am feeling dizzy and sick so ended up packing him off so I wouldn't catch it.
I had a phone call from the special needs co-ordinator to say that the ELSAs and staff were finding it emotionally difficult to cope with our situation so she had phoned the hospice in a non named basis and had arranged for the social worker to come to their inset day on 29th for advice and support. I would have thought that the ELSAs should have been getting supervision from the special needs co-ordinator or the school counsellor and I know the school counsellor gets supervision. It made me feel as if I'm not welcome in school incase I upset the staff!!! Well, that's tough - if I can go into school then I will and it is up to the school to get their own mental health sorted out!!! I gave the school permission to contact the social worker and told them who I work with.
I then had a phone call from the social worker who was concerned that the school weren't coping so she will go in on that monday but is coming to see us this monday and I will tell the children my prognosis this monday and then she will come round to mop up.
saturday - a friend did my food shopping and took AJ to a party and back again so that really helped. My sister-in-law cooked the most fantastic spag bol so a big thank you there. I always enjoy other people's spag bol so I do really enjoy the spag bols that other people cook for me as well!!!
Sunday - Hubby returned -very tired still.
Monday - first day of half term!!! I'm used to facilitating groups but not my own family!!! i used some of the worksheets from 'When a relative has a serious illness'. It was very interesting seeing who they would go to for help, what my illness has meant in good and bad ways and about how angry we all are and how if you worry, you get other pains so they all drew on my badly drawn pictures about the headaches and tummy pains they all get. Laura was very tearful and AJ just hugged blankie but it was a relief taht they knew and we could talk about it. The last few months I've felt they have known but nobody wanted to ask or admit it.
Would you believe just after I'd said I wouldn't live for long, Laura suddenly realised that Snowy the guinea pig was still in her hutch with all the night covers on so she went out and found Snowy cold and semi-conscious so again got hysterical. we managed to warm her up and cuddled her so when the social worker arrrived she had that to deal with as well as me.
The social worker was brilliant with them and they were very honest back and she is seeing us next week so we can talk about how we can work out the anger side.
Later, that afternoon. Hubby and Laura took Snowy to the vets and Laura made the decision to have her put to sleep as her prognosis was so poor and she was suffering. Poor Laura - she seems to have to make decisions or do things that 10 yr olds shouldn't have to. Poor Laura couldn't eat for the rest of the day and cried in her sleep once she eventually settled. Promised her new guinea pigs.
Tuesday -went to see new guinea pigs but need to get hutch properly cleaned etc. Laura much happier now she knows we are getting new pets. Mum also arrived which was a relief as hadn't realised how tired I'd got during hubby's absence and 2 days of half term!!
Labels: all gone pear shaped
posted by dippykate @ 4:36 PM
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