Cock ups and Fluid Round Heart
Firstly, I'll start by saying thank you to our friend who cooks dinner for us on a wednesday night as she had organised a wonderful lunch and we sang carols and had organised a fun quiz that was about christmas carols and songs and based on that Roy Walker Show whose name I've now forgotten but he said 'just say what you see' so that was a lovely distraction and as I walked up there with mum with no trouble, I now feel more confident that I can walk up to see her again on my own. I've really lost faith in my ability to do things on my own since being ill this time. It's so unlike me and hope I can get over it but I'm worried about my capability and if I will get muddled out on my own.
OK so hope you are ready for another report of cock ups. Well as usual if it could go wrong it went wrong. Was ready for 945am for my 1045am appointment but the transport didn't turn up! It should have clicked it wasn't going to be my day but ever the optimist....They had to send a taxi at 11am which was better really as had put together a basket of fruit, nuts etc for the chemo staff and I wasn't crushed in the back.The taxi man wheeled me down to the ward end as had bed booked and as we were passing the waiting room the chemo receptionist was outside and took my appointment card to book me in. By this time I was in agony from my back and shoulder and I was thinking in a minute I can lie down and I'll feel better. However, at the ward reception, the sister told me that no bed had been booked for me so I just burst into tears so she put me in the ward waiting room which at least had a supportive high back chair and got me a pillow to help me rest my back and I took 20mg of oromorph. Had already taken 80mg MST at 8am plus diclofenac and paracetamol.The sister couldn't find me a recliner chair for at least an hour so I just had to sit and wait. It was so frustrating as I knew the onc would order xrays and it seemed so stupid to wait to see him and then get an xray and go back to see him again but the NHS doesn't work like that does it!!Then the research nurse arrived with my notes after about 45mins and it was then I found out that I wasn't on the clinic list either so I don't know what had happened to why I got booted off the system. At least the oromorph was working and the research nurse spent a long time with me which was lovely and made me feel someone cared. Then my mum arrived!!! I just felt like throwing my nuts and fruit around the whole place I was so angry and unhappy and knew the receptionist had sorted it all out last week.At just after noon, I got a recliner chair so could lie down on my side and rest better. I saw the onc at 115pm who of course ordered xrays and examined me and thought I had new bony mets in my ribs. he really hurt me as he was listening and tapping my chest but he said my chest sounded clear and I had no obvious sign of cord compression. He also thought I may have strained muscles as I am so weak but can't think of anything I've done that is remotely strenuous.The onc came to see me about 4pm to say he couldn't see anything new bony spread but to me that means nothing as in 2006 my massive hip/pelvis one didn't show but he could see my heart had significantly enlarged and thought it was more likely that I've got fluid around my heart than heart failure due to herceptin damage as I've got no other signs of heart failure. So now waiting for emergency echo and fluid drainage from my heart. Not sure how they can do this as thought the solid tumour was wrapping itself round my heart so don't know where they put a needle in. He still gave me the herceptin though as we felt it was worth the risk.
My chemo didn't start till 445pm so didn't have the steroids till 5pm so although exhausted I can't settle to sleep as steroids make me feel so twitchy. My chemo didn't finish until 615pm and got home at 645pm. Absolutely exhausted and still in immense pain with no apparent cause.
Poor Laura is still continually coughing but wants and needs to go to school tomorrow.
Want to finish my christmas shopping tomorrow and then meeting friends for lunch.
I know I need this echo and draining urgently but also have plans etc I don't want to cancel and want to see AJ in his school production!! Want my cake and eat it again!!
Had a lovely lunch on wednesday at my friends house where we sang carols and she provided a wonderful lunch and a fun quiz that was about christmas carols and songs and based on that Roy Walker Show whose name I've forgotten but he said 'just say what you see' so that was a lovely distraction and as I walked up there with mum now feel more confident that I can walk up to see her again.
Friday - I went to my friend's house for lunch. My idea had been that we go out somewhere and I treat them as they usually come on a monday and do my housework but due to their work commitments etc we had to squeeze it in at home. I think we did better for taste at home as one of them had made a really tasty lentil and bacon soup with some lovely bread and then some lovely yogurts.
That evening, the twins went off to their Scouts' christmas camp. At least, they were indoors this time as it was a cold and wet weekend.
Later that evening, Wendy came round to see me so we sat in my sanctuary to have a good chat without interuption which was lovely.
The twins returned sunday afternoon and then it was time for our christmas ritual of getting out Tree and decorating it and the rest of the house. (Tree starts with a capital letter as it is a noun to us)
We love our Tree and it is Pete's ambition for Tree to last his lifetime. It is only 3 ft tall but we've had it since we've been together so it's very special. Before having the children, it used to be decorated with wooden toys like nutcracker soldiers, rocking horses, small angels and father christmas with a star on top and tinsel , baubles and coloured lights.
I've only ever made 1 totally co-ordinated tree and that was on the first christmas in my house on my own in 1990 and it was silver and pink and that was a real tree. Was that fashionable then as writing about it makes me think it sounds more like the 8os.
I always admire other people's co-ordinated trees and would like to have the discipline to do it but anyone who knows us would not be surprised to find our Tree is rather eclectric!!!
Since having the children, we've now got some really sweet little knitted toys, fluffy toys and decorations they have made plus the wooden baubles and angels I bought back from Prague in 2006 and the original wooden ones. We now use LED lights with reusable batteries and at the top is a rather badly made pink angel, I made at a mum's and toddlers group. It is based around an old fashioned peg and was extremely fiddly to make. I think it was way too over-ambitious for a 3-4 yr old to make and too ambitious for a then 38yr old with 3 yr old twins and a 7 month old baby to care for at the same time and I got very sressed doing it as I could see ithers making perfect angels and mine was all lopsided as I got the twins to help me but I made it and that is important to us. I never made it back to the group after that week - all the mum's were too arty for me and they usually only had 1 child to help make things and I had 3 and we had more fun jumping in puddles, blowing bubbles and building train tracks!!!! (Just thought I love bubbles -I've always wanted an electric/battery powered bubble machine!!! Bit late now for my christmas list and, actually can you buy bubble machines this time of year?- you see them in the summer. I always had pots of bubbles in the house when the children were young as it worked as a distraction when it got a bit manic - yes, the house got messy and wet but it was fun).
To go back to Tree, Laura always makes a nest for a cream robin we bought from a garden centre and nestles it in somewhere and then we add the chocolate decorations and sugar cane hoops that Woody in particular wants to finish off eating befire Christmas Day. Under Tree, we have some little penguin decorations and various other snowmen and other christmas decorations.
The rest of the house has LED lights and tinsel hanging around and there are penguin lights in the front window. This year, the children have put some decorations in their bedroom and Pete has put some blue lights and a little tree in our bedroom. For some reason, which I'm sure someone can give me a scientific explanation for, the blue lights make the bronze dragonfly have yellow wings. It makes it look very pretty so I'm pleased whatever the explanation is.
Firstly, I'll start by saying thank you to our friend who cooks dinner for us on a wednesday night as she had organised a wonderful lunch and we sang carols and had organised a fun quiz that was about christmas carols and songs and based on that Roy Walker Show whose name I've now forgotten but he said 'just say what you see' so that was a lovely distraction and as I walked up there with mum with no trouble, I now feel more confident that I can walk up to see her again on my own. I've really lost faith in my ability to do things on my own since being ill this time. It's so unlike me and hope I can get over it but I'm worried about my capability and if I will get muddled out on my own.
OK so hope you are ready for another report of cock ups. Well as usual if it could go wrong it went wrong. Was ready for 945am for my 1045am appointment but the transport didn't turn up! It should have clicked it wasn't going to be my day but ever the optimist....They had to send a taxi at 11am which was better really as had put together a basket of fruit, nuts etc for the chemo staff and I wasn't crushed in the back.The taxi man wheeled me down to the ward end as had bed booked and as we were passing the waiting room the chemo receptionist was outside and took my appointment card to book me in. By this time I was in agony from my back and shoulder and I was thinking in a minute I can lie down and I'll feel better. However, at the ward reception, the sister told me that no bed had been booked for me so I just burst into tears so she put me in the ward waiting room which at least had a supportive high back chair and got me a pillow to help me rest my back and I took 20mg of oromorph. Had already taken 80mg MST at 8am plus diclofenac and paracetamol.The sister couldn't find me a recliner chair for at least an hour so I just had to sit and wait. It was so frustrating as I knew the onc would order xrays and it seemed so stupid to wait to see him and then get an xray and go back to see him again but the NHS doesn't work like that does it!!Then the research nurse arrived with my notes after about 45mins and it was then I found out that I wasn't on the clinic list either so I don't know what had happened to why I got booted off the system. At least the oromorph was working and the research nurse spent a long time with me which was lovely and made me feel someone cared. Then my mum arrived!!! I just felt like throwing my nuts and fruit around the whole place I was so angry and unhappy and knew the receptionist had sorted it all out last week.At just after noon, I got a recliner chair so could lie down on my side and rest better. I saw the onc at 115pm who of course ordered xrays and examined me and thought I had new bony mets in my ribs. he really hurt me as he was listening and tapping my chest but he said my chest sounded clear and I had no obvious sign of cord compression. He also thought I may have strained muscles as I am so weak but can't think of anything I've done that is remotely strenuous.The onc came to see me about 4pm to say he couldn't see anything new bony spread but to me that means nothing as in 2006 my massive hip/pelvis one didn't show but he could see my heart had significantly enlarged and thought it was more likely that I've got fluid around my heart than heart failure due to herceptin damage as I've got no other signs of heart failure. So now waiting for emergency echo and fluid drainage from my heart. Not sure how they can do this as thought the solid tumour was wrapping itself round my heart so don't know where they put a needle in. He still gave me the herceptin though as we felt it was worth the risk.
My chemo didn't start till 445pm so didn't have the steroids till 5pm so although exhausted I can't settle to sleep as steroids make me feel so twitchy. My chemo didn't finish until 615pm and got home at 645pm. Absolutely exhausted and still in immense pain with no apparent cause.
Poor Laura is still continually coughing but wants and needs to go to school tomorrow.
Want to finish my christmas shopping tomorrow and then meeting friends for lunch.
I know I need this echo and draining urgently but also have plans etc I don't want to cancel and want to see AJ in his school production!! Want my cake and eat it again!!
Had a lovely lunch on wednesday at my friends house where we sang carols and she provided a wonderful lunch and a fun quiz that was about christmas carols and songs and based on that Roy Walker Show whose name I've forgotten but he said 'just say what you see' so that was a lovely distraction and as I walked up there with mum now feel more confident that I can walk up to see her again.
Friday - I went to my friend's house for lunch. My idea had been that we go out somewhere and I treat them as they usually come on a monday and do my housework but due to their work commitments etc we had to squeeze it in at home. I think we did better for taste at home as one of them had made a really tasty lentil and bacon soup with some lovely bread and then some lovely yogurts.
That evening, the twins went off to their Scouts' christmas camp. At least, they were indoors this time as it was a cold and wet weekend.
Later that evening, Wendy came round to see me so we sat in my sanctuary to have a good chat without interuption which was lovely.
The twins returned sunday afternoon and then it was time for our christmas ritual of getting out Tree and decorating it and the rest of the house. (Tree starts with a capital letter as it is a noun to us)
We love our Tree and it is Pete's ambition for Tree to last his lifetime. It is only 3 ft tall but we've had it since we've been together so it's very special. Before having the children, it used to be decorated with wooden toys like nutcracker soldiers, rocking horses, small angels and father christmas with a star on top and tinsel , baubles and coloured lights.
I've only ever made 1 totally co-ordinated tree and that was on the first christmas in my house on my own in 1990 and it was silver and pink and that was a real tree. Was that fashionable then as writing about it makes me think it sounds more like the 8os.
I always admire other people's co-ordinated trees and would like to have the discipline to do it but anyone who knows us would not be surprised to find our Tree is rather eclectric!!!
Since having the children, we've now got some really sweet little knitted toys, fluffy toys and decorations they have made plus the wooden baubles and angels I bought back from Prague in 2006 and the original wooden ones. We now use LED lights with reusable batteries and at the top is a rather badly made pink angel, I made at a mum's and toddlers group. It is based around an old fashioned peg and was extremely fiddly to make. I think it was way too over-ambitious for a 3-4 yr old to make and too ambitious for a then 38yr old with 3 yr old twins and a 7 month old baby to care for at the same time and I got very sressed doing it as I could see ithers making perfect angels and mine was all lopsided as I got the twins to help me but I made it and that is important to us. I never made it back to the group after that week - all the mum's were too arty for me and they usually only had 1 child to help make things and I had 3 and we had more fun jumping in puddles, blowing bubbles and building train tracks!!!! (Just thought I love bubbles -I've always wanted an electric/battery powered bubble machine!!! Bit late now for my christmas list and, actually can you buy bubble machines this time of year?- you see them in the summer. I always had pots of bubbles in the house when the children were young as it worked as a distraction when it got a bit manic - yes, the house got messy and wet but it was fun).
To go back to Tree, Laura always makes a nest for a cream robin we bought from a garden centre and nestles it in somewhere and then we add the chocolate decorations and sugar cane hoops that Woody in particular wants to finish off eating befire Christmas Day. Under Tree, we have some little penguin decorations and various other snowmen and other christmas decorations.
The rest of the house has LED lights and tinsel hanging around and there are penguin lights in the front window. This year, the children have put some decorations in their bedroom and Pete has put some blue lights and a little tree in our bedroom. For some reason, which I'm sure someone can give me a scientific explanation for, the blue lights make the bronze dragonfly have yellow wings. It makes it look very pretty so I'm pleased whatever the explanation is.
Labels: christmas decorations, fluid around heart, Tree
posted by dippykate @ 11:08 PM
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