Friday -I had ordered a new mattress for woody's bed and it was supposed arrive between 8 -1pm. Guess what time it turned up - 1230pm so the morning when it was nice was spent in the house waiting apart from a quick trip to the GP.
He had a medical student with him and was teaching her about the different sounds my chest makes. It sounds different on the left from the fibrosis damage to the central and right where the cancer is apparently. I just knew it was very strange having 2 people listening to my chest at the same time. As I have said before, I'm really happy to have students in with me as long as they ask my permission first. I usually learn something as well.
He was happy for me to fiddle with the steroids till I get the right dose. I was definately much more wheezy today and felt that the 4mg was not doing enough and the 8mg too high so will try 6mg for a couple of days and then reduce it back down to hopefully 4mg.
Very much the 'expert patient' in the government's grand scheme of the Health Service.
He was also encouraging me to write to this other tykerb trial guy as I have my letters and scan results and test out what he thinks about me seeing him probably privately. Definately a DIY Day then!!
At lunch time, I got a phone call from the Occupational Health lady at the hospice. She could supply me with a wheelchair, special seat and a blowup mattress as she was concerned that i did not have a 'special mattress' for my bone mets. No-one has ever mentioned this to me before that there was one. Apparently, if I talk to the district nurse she can get me one so hubby will be very happy as he likes soft mattresses!! Definately worth chasing that one up then!! By 430pm, it had all arrived courtesy of a volunteer at the hospice so if you ever feel like donating cash to the local hospice please do as it really does make a difference to cancer people like me and their families.
It seems you either can get everything or nothing. I seem to be able to get any aid I need but my housebound friend who can not travel can not get seen by a dentist for 3-4 months and her filling has fallen out. She gets no help - how is that equitable in this modern NHS?
I also went out to test out more disablity scooters. I went to the local one first where earlier in the week i had met a lovely guy but this time was met by 2 elderly women who obviously took umbrage that I disturbed their cosy tea and biscuits on the lift up armchairs. they were so unbelievably rude. Just pointed out the other scooter and said the other one that I had wanted had been sent back to Portsmouth so there was no way i could see which was best. They also were very unhelpful about the mattress protector I had ordered so I left and never want to return or recommend it which is a shame as fundamentally I want to deal with local suppliers and not let the world of supermarkets have everything their way.
I then went on to a bigger shop where the service was far more professional but as he said I'm very limited in choice for portable ones as they seem to be designed for the short legged!!! He also had the mattress protector I was looking for and was helpful about and informative about it. Anyway, I found one that seemed to fit me but not the price so went back to internet shopping and found a site that said they would undercut any offer. I filled out the form via the internet and was just getting the tickets for The Simpsons when they phoned me back and I've got it at half the price in the shop and it will arrive on wednesday. Sorry - that is double standards but these things are not cheap and we do not have that sort of money to support the local man this time. I will try again with other purchases. Actually, we did - we supported the local pet shop, and not the new one that has set up. Our part of town is so small I can not see how it can support 2 pet shops and the original one has a lovely man running it so want to support him.
I really enjoyed The Simpsons and so did the family. It was lovely to do something as a whole family again. We did the obligatory MacDonalds trip as well so the kids were well pleased.
Then came the evening of mattress upheaval. Hubby was out helping his dad with furniture moving so it was me and the kids doing good team work for once. Taking AJ's mattress out first and then getting Woody's down from the top bunk and into Aj's bottom bunk. Poor thing -he is really distraught that we are throwing his old mattress away but it has had too many spillages on it and it reeks. Will see if this mattress protector works and then buy him his own new mattress as it is unfair really.
Then the big effort of getting the new mattress out of its double sealed wrapper and up onto the top bunk. we did it so was really pleased that the 4 of us had succeeded in doing team work so well.
At the end of that effort, would you believe that Woody then spent the night on the floor of his sister's room like he has for the last week!!!
Saturday and hubby worked so after a few quick trips out to the Barbers, local junk shop and pet shop again, the sun had stopped shining and we eventually went out to the Shoreline where the children all played happily and we bought pathetically small ice creams. What a rip off - about the size of an ice cube!! When we got back home, our local Mr Whippy came round so we had another one about which was about 4 times the size with toppings for the same price!!
Spent the rest of the day trying to pack for Woody's 100yr scouting camp. Wonder if any of his clothes can be saved after that as it will be so muddy - well maybe he might only wear 1 pair of trousers like he did last time!!
Tried to support the local shops but the radio we bought did not work and was shut by the time I realised that and couldn't get a torch so had to go to Tesco's. That was interesting as the big travellator kept stopping - about 5 times in 15 mins as they were having intermittent power cuts. It suddenly stopped when Woody and I were half way down and the force of the stop made us lurch forward that we nearly fell. Wonder if anybody did actually fall.
Off to meet girls for lunch tomorrow (relaxing train journey i hope) and hubby taking Woody to cub camp and the other 2 somewhere in the forest for paddling and other adventures.
He had a medical student with him and was teaching her about the different sounds my chest makes. It sounds different on the left from the fibrosis damage to the central and right where the cancer is apparently. I just knew it was very strange having 2 people listening to my chest at the same time. As I have said before, I'm really happy to have students in with me as long as they ask my permission first. I usually learn something as well.
He was happy for me to fiddle with the steroids till I get the right dose. I was definately much more wheezy today and felt that the 4mg was not doing enough and the 8mg too high so will try 6mg for a couple of days and then reduce it back down to hopefully 4mg.
Very much the 'expert patient' in the government's grand scheme of the Health Service.
He was also encouraging me to write to this other tykerb trial guy as I have my letters and scan results and test out what he thinks about me seeing him probably privately. Definately a DIY Day then!!
At lunch time, I got a phone call from the Occupational Health lady at the hospice. She could supply me with a wheelchair, special seat and a blowup mattress as she was concerned that i did not have a 'special mattress' for my bone mets. No-one has ever mentioned this to me before that there was one. Apparently, if I talk to the district nurse she can get me one so hubby will be very happy as he likes soft mattresses!! Definately worth chasing that one up then!! By 430pm, it had all arrived courtesy of a volunteer at the hospice so if you ever feel like donating cash to the local hospice please do as it really does make a difference to cancer people like me and their families.
It seems you either can get everything or nothing. I seem to be able to get any aid I need but my housebound friend who can not travel can not get seen by a dentist for 3-4 months and her filling has fallen out. She gets no help - how is that equitable in this modern NHS?
I also went out to test out more disablity scooters. I went to the local one first where earlier in the week i had met a lovely guy but this time was met by 2 elderly women who obviously took umbrage that I disturbed their cosy tea and biscuits on the lift up armchairs. they were so unbelievably rude. Just pointed out the other scooter and said the other one that I had wanted had been sent back to Portsmouth so there was no way i could see which was best. They also were very unhelpful about the mattress protector I had ordered so I left and never want to return or recommend it which is a shame as fundamentally I want to deal with local suppliers and not let the world of supermarkets have everything their way.
I then went on to a bigger shop where the service was far more professional but as he said I'm very limited in choice for portable ones as they seem to be designed for the short legged!!! He also had the mattress protector I was looking for and was helpful about and informative about it. Anyway, I found one that seemed to fit me but not the price so went back to internet shopping and found a site that said they would undercut any offer. I filled out the form via the internet and was just getting the tickets for The Simpsons when they phoned me back and I've got it at half the price in the shop and it will arrive on wednesday. Sorry - that is double standards but these things are not cheap and we do not have that sort of money to support the local man this time. I will try again with other purchases. Actually, we did - we supported the local pet shop, and not the new one that has set up. Our part of town is so small I can not see how it can support 2 pet shops and the original one has a lovely man running it so want to support him.
I really enjoyed The Simpsons and so did the family. It was lovely to do something as a whole family again. We did the obligatory MacDonalds trip as well so the kids were well pleased.
Then came the evening of mattress upheaval. Hubby was out helping his dad with furniture moving so it was me and the kids doing good team work for once. Taking AJ's mattress out first and then getting Woody's down from the top bunk and into Aj's bottom bunk. Poor thing -he is really distraught that we are throwing his old mattress away but it has had too many spillages on it and it reeks. Will see if this mattress protector works and then buy him his own new mattress as it is unfair really.
Then the big effort of getting the new mattress out of its double sealed wrapper and up onto the top bunk. we did it so was really pleased that the 4 of us had succeeded in doing team work so well.
At the end of that effort, would you believe that Woody then spent the night on the floor of his sister's room like he has for the last week!!!
Saturday and hubby worked so after a few quick trips out to the Barbers, local junk shop and pet shop again, the sun had stopped shining and we eventually went out to the Shoreline where the children all played happily and we bought pathetically small ice creams. What a rip off - about the size of an ice cube!! When we got back home, our local Mr Whippy came round so we had another one about which was about 4 times the size with toppings for the same price!!
Spent the rest of the day trying to pack for Woody's 100yr scouting camp. Wonder if any of his clothes can be saved after that as it will be so muddy - well maybe he might only wear 1 pair of trousers like he did last time!!
Tried to support the local shops but the radio we bought did not work and was shut by the time I realised that and couldn't get a torch so had to go to Tesco's. That was interesting as the big travellator kept stopping - about 5 times in 15 mins as they were having intermittent power cuts. It suddenly stopped when Woody and I were half way down and the force of the stop made us lurch forward that we nearly fell. Wonder if anybody did actually fall.
Off to meet girls for lunch tomorrow (relaxing train journey i hope) and hubby taking Woody to cub camp and the other 2 somewhere in the forest for paddling and other adventures.
Labels: disability scooters, packing for camping, The Simpsons
posted by dippykate @ 9:25 PM
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