Camping in The Rain/ Stomach pains
It was rather a hectic journey home from the hospital. Pete was bringing me home and my mum was picking the children up as the twins had forgotten their rain macs at school and they needed them for their scout camp so grandma had driven back to school to get them. Mum and I took Laura to the opticians whilst Pete took Woody and AJ home.
The optician decided that Laura did need glasses for the whiteboard, telly etc. I'm sure more children need glasses now becuase of these computerised white boards - instead of blackboards, the teachers use the computer which is projected onto a white board. the writing seems to glow and the teachers often use colour which can be hard to read. Laura is quite happy with glasses for school work etc. I'm not sure how she'd feel if she wore them all the time.
Laura is working so hard at her homework and seems so conscientious and is producing reels of work. Woody is really struggling with the concept of homework and is not putting anywhere as much effort into it and infact, the teacher phoned us up this week as she feels he is not doing his homework properly. I think a lot of the problem is his handwriting is so bad that everybody including himself can't read it. This week he has typed everything and he is putting more effort into it and said his english teacher was pleased with his imaginative story plan.
Woody is really upset tonight (thurs 9th) as we gave Laura a small present as she is working so hard and he feels it is unfair. It is unfair but then she is putting all this effort into it and he was doing the bare minimal until yesterday. He is going to see England play tomorrow so that to me is a big present but I think he wanted a pressie or more attention from his dad today!!! He feels hubby doesn't believe in him and Woody said to me he 'needs more self belief' and that dad isn't showing any belief in him. Sounds as if the emotional support people are trying to boost his self esteem -be nice if they would phone and tell us what is happening. Must make an appointment to see them next week as Woody has asked me to do this. It is so hard for him at present but then he makes his own bed by playing on the xbox or playstation continually and having to be nagged to do homework etc. Also, we need to make more effort to encourage Woody and praise him more. I suppose that is the problem - when you are capable, sometimes you end up with less praise but you still need it. Woody always appears so capable and calm but he still needs the praise. Have to practice what I preached when I was a health visitor - it's always harder to be on the inside looking out rather than observe and give advice.
This transition from junior to secondary has been so hard for Woody. I don't think it helps that this is the first year, their school has taken on boys and there are only 105 boys in the entire school and the big year 11 girls keep patting the year 7 boys on the head and calling them 'sweet'. He was used to being a well respected big year 6 boy who helped the deputy head and did all the computer work for the school assemblies and having a lot of responsibility put on him which he thrived on. Now, he is a little fish in a big pond and finds it hard - poor thing.
Laura was also upset tonight as her best friend from infant school maybe moving and this is obviously upsetting her but I don't know whether it is definite or maybe they are going as we'd miss them too.
Anyway,(8mg steroids mania causing my brain to fire all sorts of ideas) after the opticians, we then bought fish and chips and the twins had to pack quickly for their weekend camp and the weather forecast is continual rain.
Saturday - rain and more rain - poor twins. My sister and her younger 2 came down and mum was here so it was a lovely family day.
Mum stayed quite a while on sunday as we needed the help with all the washing and clearing up the mud the twins brought back from camp and trying to dry stuff out.
Pete actually cooked his first roast dinner today - not quite on his own but all I did was to sit on the stool and gave directions but didn't actually do anything else. However, I was rather shocked as would any Yorkshire man reading this to discover that he did not have a clue how to make yorkshire puds!!! He is so proud of his yorkshire roots, somehow I thought it was ready bred in all yorkshire men to make yorkshire puds!! Anyway, they were lovely when they were cooked and we found out that AJ likes roast parsnips which he just wouldn't try before - must be the way his dad cooked them made him try them!!!
At least that is another of my worries ticked off my list. For some reason, it was very important to me that Pete could cook a roast dinner and be able to make yorkshire puddings from scratch and pancakes. You'd of thought I would worry about bigger issues but it is so part of our family routine to have roast dinners and pancakes for breakfast on a regular basis and I wanted that to continue. Is that odd or normal thing to worry about?
Monday - why is it all or nothing with me??!! My friend came and cut 2 of my wigs and have discarded any ideas to do with the ozzy osbourn, anne widdecombe, ginger tomcat and esther rantzen ones so will send them to the wig bank. I'm sure for someone they will be perfect but not for me!! One of them is a really good quality wig so it would be a shame for someone not to use it as the hair is more realistic than most and is a lovely chestnut colour. At the same time, one of my friends was ironing and cleaning and I had loads of phone calls to sort out and field. Then my nursing friend arrived so it was a bit hectic.
The others left and my friend and I went into town for lunch. I had a wonderful chicken and avocado wrap for lunch - it still feels as if a miracle has happened as I can swallow so well - it is a miracle even the oncologists are saying that!!! On the 13th, it will be a year since we renewed our wedding vows and I know then I couldn't swallow that well.
We were not very green and then drove down the road to Argos to pick up a few bits we needed and then in the car again to Tesco Direct to buy some more. My friend picked up a beautiful duck egg blind for her bedroom for £3 - it was a little frayed at the edge but it needed to be cut down anyway so it didn't matter. I have no idea what I did but somehow knocked the lid off the steamer - the pyrex lid - it shattered everywhere and now what do I do with a steamer and no lid!!! Thank you my friend for clearing up after me - I did appreciate it.
Tuesday - I didn't sleep well as my poor stomach was doing sort of labour pains/comtractions and it was so painful and odd. My own fault as not taaken the laxatives properly and so paying the price now. I got up at 745am after falling asleep at 5am for the carer to come at 8am and help me shower. She hadn't turned up by 9am so phoned the office to find it wasn't down. I am sure I told them I was home on the friday before - the communjication is terrible at management level. The carers are wonderful and am sure they could organise their work day better and not be criss crossing the town all the time.
I went to the hospice with 2 of the wigs including one of themthat had been cut yesterday. Everyone said how well I looked and there was something 'different' about me. I told them it was the wig and they were all surprised. The 90 yr old man was wonderfully cheery and flirty with me!!! It was fun!!! The other 'patients' may all be over 65 but they are a good laugh and also very supportive. I really enjoy going to the hospice and not just for the complementary therapies, manicure and hairdresser. The volunteers are so dedicated and wonderful as are the paid staff. It really is a special place and as there is a waiting list at present, I feel very lucky to be able to benefit from this service. In the afternoon, we visited the craft shop so I got a bit carried away and bought some christmas craft stuff and then we went to the garden centre for tea and cakes. This is the first time I've been able to do this as before I couldn't go as it would upset me too much to see people eat 'normal' food. I'd never realised how much of an impact on the social side of life, being able to eat 'normally' had.
The other thing that has changed is that now I'm not in continual pain. I know it sounds daft especially as I was a nurse, but I hadn't realised how much pain I was in and how it was impacting on my life, my mood and general enjoyment of life and my energy levels. I don't cry out when someone sits on the settee next to me as it would jar my back or hip and cause pain and I'm not trying to get time to pass quickly so I could go to bed to rest my back and I'm happier and more energetic as I'm not wasting energy on trying to hide my pain from others and pain itself is draining. life is definately sweeter.
Wednesday - Pete was off and I slept in which made me feel better. The district nurse came to take my blood for tomorrow's chemo. We then went to see a couple of printers for my service sheets and the railway station to collect the tickets for London on Saturday and Pete needed things for the car port - don't ask about that please!! The carers came in to do some shopping and cleaning. They are really lovely people so i hope I don't have others as I'm happy and feel I can trust these ones.
Thursday - the hospital transport didn't turn up so a man who was visiting next door offered me a lift as he lived over that side of the city so I took the gamble and went with him. I knew I'd seen him before but my friend was quite rightly worried but it was fine and I texted her to say I was OK.
I waited about an hour and a half again to see the registrar that I'd seen in hospital so at least she knew what was going on. My weight is stable, my liver tests are all normal so that is great as one of them had been high for a long time but it's not now and my iron levels have picked up a bit as have my white blood cells and my lump is about 1-1.5cm now and just the dimple is there so feel really chuffed and so must seize this moment of good news for once!!! Infact, quite a few women said I looked so much better as did the volunteers in the MacMillan Centre so am pleased. Could it be just the makeup though!! This time as before when I had no hair, I tend to wear more makeup. I only do my eyes though - I don't bother with foundation or even lipstick or maybe it is because I am 'better'.
I had a little wander around the hospital and bought a baguette for lunch and spent a lot of time in the MacMillan Centre. I was the only patient - there was 4 volunteers. I don't know why people don't go down there as the nurses always ring when your chemo is ready and you can carry a bleep so you don't miss your turn and it is so much more comfortable there. Proper settees and drinkable tea and coffee and they always offer sweets or biscuits and MacMillan have reissued lots of really good information leaflets as well. It seems underused as a resource centre which is a shame for everyone as patients get stressed and uncomfortable in the chemo waiting room and the volunteers are great and feel frustrated that nobody visits them. I said I was tired and they offered me the use of one of their reclining chairs. Apparently, a man slept there for 2 hours on tuesday. I was very tempted!!
By this time it seemed about right to go back to the waiting room and I had just about sat down when they called my name. After the intravenous piriton, I fell asleep for about 2 hours but had to go to the toilet a couple of times and on one occasion, I fell asleep on the toilet. I woke up when my head touched my knees - very odd sensation and it would have been very embarassing if I had fallen off when I was asleep!!! I know I took several phone calls but not sure if I can remember who phoned so will have to go through my call log to see if it jogs my memory. One was definately to say Laura's glasses are ready to collect so must do that soon. Pete could take her at the weekend - I know nothing about spectacles!!!
Really looking forward to going to London on Saturday and I'm not even going to the match!!!
Got one of the orders through from BreastCancerCare and there is a parcel to collect at the post office tomorrow so hopefully that will be either the rest of the BCC order or the MacMillan order but will contact you when I have the complete order and hope I did it all right!!!
It was rather a hectic journey home from the hospital. Pete was bringing me home and my mum was picking the children up as the twins had forgotten their rain macs at school and they needed them for their scout camp so grandma had driven back to school to get them. Mum and I took Laura to the opticians whilst Pete took Woody and AJ home.
The optician decided that Laura did need glasses for the whiteboard, telly etc. I'm sure more children need glasses now becuase of these computerised white boards - instead of blackboards, the teachers use the computer which is projected onto a white board. the writing seems to glow and the teachers often use colour which can be hard to read. Laura is quite happy with glasses for school work etc. I'm not sure how she'd feel if she wore them all the time.
Laura is working so hard at her homework and seems so conscientious and is producing reels of work. Woody is really struggling with the concept of homework and is not putting anywhere as much effort into it and infact, the teacher phoned us up this week as she feels he is not doing his homework properly. I think a lot of the problem is his handwriting is so bad that everybody including himself can't read it. This week he has typed everything and he is putting more effort into it and said his english teacher was pleased with his imaginative story plan.
Woody is really upset tonight (thurs 9th) as we gave Laura a small present as she is working so hard and he feels it is unfair. It is unfair but then she is putting all this effort into it and he was doing the bare minimal until yesterday. He is going to see England play tomorrow so that to me is a big present but I think he wanted a pressie or more attention from his dad today!!! He feels hubby doesn't believe in him and Woody said to me he 'needs more self belief' and that dad isn't showing any belief in him. Sounds as if the emotional support people are trying to boost his self esteem -be nice if they would phone and tell us what is happening. Must make an appointment to see them next week as Woody has asked me to do this. It is so hard for him at present but then he makes his own bed by playing on the xbox or playstation continually and having to be nagged to do homework etc. Also, we need to make more effort to encourage Woody and praise him more. I suppose that is the problem - when you are capable, sometimes you end up with less praise but you still need it. Woody always appears so capable and calm but he still needs the praise. Have to practice what I preached when I was a health visitor - it's always harder to be on the inside looking out rather than observe and give advice.
This transition from junior to secondary has been so hard for Woody. I don't think it helps that this is the first year, their school has taken on boys and there are only 105 boys in the entire school and the big year 11 girls keep patting the year 7 boys on the head and calling them 'sweet'. He was used to being a well respected big year 6 boy who helped the deputy head and did all the computer work for the school assemblies and having a lot of responsibility put on him which he thrived on. Now, he is a little fish in a big pond and finds it hard - poor thing.
Laura was also upset tonight as her best friend from infant school maybe moving and this is obviously upsetting her but I don't know whether it is definite or maybe they are going as we'd miss them too.
Anyway,(8mg steroids mania causing my brain to fire all sorts of ideas) after the opticians, we then bought fish and chips and the twins had to pack quickly for their weekend camp and the weather forecast is continual rain.
Saturday - rain and more rain - poor twins. My sister and her younger 2 came down and mum was here so it was a lovely family day.
Mum stayed quite a while on sunday as we needed the help with all the washing and clearing up the mud the twins brought back from camp and trying to dry stuff out.
Pete actually cooked his first roast dinner today - not quite on his own but all I did was to sit on the stool and gave directions but didn't actually do anything else. However, I was rather shocked as would any Yorkshire man reading this to discover that he did not have a clue how to make yorkshire puds!!! He is so proud of his yorkshire roots, somehow I thought it was ready bred in all yorkshire men to make yorkshire puds!! Anyway, they were lovely when they were cooked and we found out that AJ likes roast parsnips which he just wouldn't try before - must be the way his dad cooked them made him try them!!!
At least that is another of my worries ticked off my list. For some reason, it was very important to me that Pete could cook a roast dinner and be able to make yorkshire puddings from scratch and pancakes. You'd of thought I would worry about bigger issues but it is so part of our family routine to have roast dinners and pancakes for breakfast on a regular basis and I wanted that to continue. Is that odd or normal thing to worry about?
Monday - why is it all or nothing with me??!! My friend came and cut 2 of my wigs and have discarded any ideas to do with the ozzy osbourn, anne widdecombe, ginger tomcat and esther rantzen ones so will send them to the wig bank. I'm sure for someone they will be perfect but not for me!! One of them is a really good quality wig so it would be a shame for someone not to use it as the hair is more realistic than most and is a lovely chestnut colour. At the same time, one of my friends was ironing and cleaning and I had loads of phone calls to sort out and field. Then my nursing friend arrived so it was a bit hectic.
The others left and my friend and I went into town for lunch. I had a wonderful chicken and avocado wrap for lunch - it still feels as if a miracle has happened as I can swallow so well - it is a miracle even the oncologists are saying that!!! On the 13th, it will be a year since we renewed our wedding vows and I know then I couldn't swallow that well.
We were not very green and then drove down the road to Argos to pick up a few bits we needed and then in the car again to Tesco Direct to buy some more. My friend picked up a beautiful duck egg blind for her bedroom for £3 - it was a little frayed at the edge but it needed to be cut down anyway so it didn't matter. I have no idea what I did but somehow knocked the lid off the steamer - the pyrex lid - it shattered everywhere and now what do I do with a steamer and no lid!!! Thank you my friend for clearing up after me - I did appreciate it.
Tuesday - I didn't sleep well as my poor stomach was doing sort of labour pains/comtractions and it was so painful and odd. My own fault as not taaken the laxatives properly and so paying the price now. I got up at 745am after falling asleep at 5am for the carer to come at 8am and help me shower. She hadn't turned up by 9am so phoned the office to find it wasn't down. I am sure I told them I was home on the friday before - the communjication is terrible at management level. The carers are wonderful and am sure they could organise their work day better and not be criss crossing the town all the time.
I went to the hospice with 2 of the wigs including one of themthat had been cut yesterday. Everyone said how well I looked and there was something 'different' about me. I told them it was the wig and they were all surprised. The 90 yr old man was wonderfully cheery and flirty with me!!! It was fun!!! The other 'patients' may all be over 65 but they are a good laugh and also very supportive. I really enjoy going to the hospice and not just for the complementary therapies, manicure and hairdresser. The volunteers are so dedicated and wonderful as are the paid staff. It really is a special place and as there is a waiting list at present, I feel very lucky to be able to benefit from this service. In the afternoon, we visited the craft shop so I got a bit carried away and bought some christmas craft stuff and then we went to the garden centre for tea and cakes. This is the first time I've been able to do this as before I couldn't go as it would upset me too much to see people eat 'normal' food. I'd never realised how much of an impact on the social side of life, being able to eat 'normally' had.
The other thing that has changed is that now I'm not in continual pain. I know it sounds daft especially as I was a nurse, but I hadn't realised how much pain I was in and how it was impacting on my life, my mood and general enjoyment of life and my energy levels. I don't cry out when someone sits on the settee next to me as it would jar my back or hip and cause pain and I'm not trying to get time to pass quickly so I could go to bed to rest my back and I'm happier and more energetic as I'm not wasting energy on trying to hide my pain from others and pain itself is draining. life is definately sweeter.
Wednesday - Pete was off and I slept in which made me feel better. The district nurse came to take my blood for tomorrow's chemo. We then went to see a couple of printers for my service sheets and the railway station to collect the tickets for London on Saturday and Pete needed things for the car port - don't ask about that please!! The carers came in to do some shopping and cleaning. They are really lovely people so i hope I don't have others as I'm happy and feel I can trust these ones.
Thursday - the hospital transport didn't turn up so a man who was visiting next door offered me a lift as he lived over that side of the city so I took the gamble and went with him. I knew I'd seen him before but my friend was quite rightly worried but it was fine and I texted her to say I was OK.
I waited about an hour and a half again to see the registrar that I'd seen in hospital so at least she knew what was going on. My weight is stable, my liver tests are all normal so that is great as one of them had been high for a long time but it's not now and my iron levels have picked up a bit as have my white blood cells and my lump is about 1-1.5cm now and just the dimple is there so feel really chuffed and so must seize this moment of good news for once!!! Infact, quite a few women said I looked so much better as did the volunteers in the MacMillan Centre so am pleased. Could it be just the makeup though!! This time as before when I had no hair, I tend to wear more makeup. I only do my eyes though - I don't bother with foundation or even lipstick or maybe it is because I am 'better'.
I had a little wander around the hospital and bought a baguette for lunch and spent a lot of time in the MacMillan Centre. I was the only patient - there was 4 volunteers. I don't know why people don't go down there as the nurses always ring when your chemo is ready and you can carry a bleep so you don't miss your turn and it is so much more comfortable there. Proper settees and drinkable tea and coffee and they always offer sweets or biscuits and MacMillan have reissued lots of really good information leaflets as well. It seems underused as a resource centre which is a shame for everyone as patients get stressed and uncomfortable in the chemo waiting room and the volunteers are great and feel frustrated that nobody visits them. I said I was tired and they offered me the use of one of their reclining chairs. Apparently, a man slept there for 2 hours on tuesday. I was very tempted!!
By this time it seemed about right to go back to the waiting room and I had just about sat down when they called my name. After the intravenous piriton, I fell asleep for about 2 hours but had to go to the toilet a couple of times and on one occasion, I fell asleep on the toilet. I woke up when my head touched my knees - very odd sensation and it would have been very embarassing if I had fallen off when I was asleep!!! I know I took several phone calls but not sure if I can remember who phoned so will have to go through my call log to see if it jogs my memory. One was definately to say Laura's glasses are ready to collect so must do that soon. Pete could take her at the weekend - I know nothing about spectacles!!!
Really looking forward to going to London on Saturday and I'm not even going to the match!!!
Got one of the orders through from BreastCancerCare and there is a parcel to collect at the post office tomorrow so hopefully that will be either the rest of the BCC order or the MacMillan order but will contact you when I have the complete order and hope I did it all right!!!
posted by dippykate @ 8:13 PM
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