Sunday and it was Laura's birthday treat. She wanted to go down to Bournemouth to the indoor water flume ride place so we went with 2 of my friends and their daughters who are all born about the same time. They had a whale of a time and it was a struggle to get them out after 4 and a half hours!! We did leave them to it at one stage and went out to find a decent cup of coffee - you know me and my fussiness over china cups!!! We then went to Chiquitos where the food was lovely but the service slow as they seemed short staffed on the waiting staff front. The girls sat on one table and us on another. They were entertained by a magician and then kept pestering him after that!!! They got through a huge amount of chocolate fudge cake and ice creams and Laura had a special ice cream with a candle and so we sang happy birthday to her. It was a lovely day and they all really enjoyed it there.
Wednesday - the twins 11th birthday!! As dad had gone to work, the twins opened their cards and got a tidy sum of money to spend/save and then, of course, off to school. It feels terrible knowing that this will be their last birthday with me.
This was made worse by getting an envelope through the door with a quote from a funeral directors which even had the words 'funeral undertakers' printed on the outside of the envelope - very subtle!! This quote is £1000 less than another one but since I can't find that letter I'm not sure if I'm comparing like with like. At £2 - 3000 dying is not a cheap option!!
I brought the children plus a friend home after school before we set off for the Pizza party. We definately had a girls and a boys end!! Know which one I preferred - the girls were much more refined and quieter. It worked out quite cheaply as well so nicely surprised for once.
Thursday - a bit of a rush round before having a lift to the chemo unit with my friend and to meet my sister - in- law there as well. We thought it best to have a mob behind me to support me.
We actually saw the other consultant this time and he was happy for us all to be there. We discussed my options and he felt happy to give me 3 more doses of the current chemo a long as the scans don't show anything significantly changed. Hopefully, this time they will take a while to get booked just incase eveything is not as it should be. The chemo makes such a difference to my breathing and my swallowing especially. My swallowing is a real issue as when it gets to about 3 weeks I can I have difficulties again and actually did regurgitate my food at Pizza Hut.
We discussed and so the plan is after this chemo finished to try some radiotherapy to my tumour that squashes my swallowing ability and to my vertebrae which is looking active and causing me some pain. He hoped that would buy me some time off chemo before having my final chemo of taxol. This is the one that is related to taxotere which so disagreed with me last time. However, this would be smaller so weaker doses so should be better tolerated.
If I'm lucky that could leave me getting onto christmas which made me feel better. I'm not eligible for the new trial at my hospital as they are only taking on women with first diagnosis of secondaries and the tykerb trial is about to close but no idea when or if it will be licenced or if NICE will approve it. I don't feel very sure this will happen as they have used so many end stage or advanced women in the trials in the UK whereas in the USA where it has been shown to work, they give it at a much earlier stage.
I had a lovely lunch with my sister in law who then went home whilst my friend stayed and read a book. I got called into the treatment room quite quickly but yet again there was a problem with the bone one not being prescribed until next week. No way am I going back for one drug next week when usually I get all of them together. It was eventually sorted out without too much of a delay and we got home about 530ish.
The twins had Scouts and Woody came home very excited as he has been picked as the youngest scout from thier troop to represent the scouts in a competition over a weekend. So feel very proud of him and sorry for Laura as she has had a rather chequered time between brownies and sea scouts before joining scouts so has a lot of catching up to do.
Friday - again pushed myself to do a shop at the co-op for food for saturday's trip to the Chessington World of Adventures for Woody's birthday treat before getting the train over to Gunwharf Quays to meet up with some friends from Surrey. We had a good time, firstly shopping in M and S as I was cold and bought 2 hoody type tops but posh ones for £4.99 each before going to the Water Margin for food and drink. It was lovely food but what we didn't realsie was that it closed after lunch so got a bit rushed at the end. I missed my train so luckily one of Woody's friends brought the children back to her house after the childminder had finished.
It was than a rush as Woody had 2 friends coming back to stay and Laura was off to a sleepover party and in fact left in such a rush that she forgot to take her toothbrush and present for her friend. I went out and bought fish and chips fo everyone but me as i'd had a huge lunch and guess who was the first person to fall asleep. Hubby - with a cold and then AJ about 11pm and then the boys and finally me after midnight again!! Steroid induced insomnia!!
Saturday - hubby distinctly under the weather so I got up at 7am and cooked breakfast with help from hubby and was out of the house by 840am to drive to Chessington World of Adventures. Thank goodness for mobility scooters, steroids and a fast track system for disabled guests. The manager was not happy as I had no carer of aged 14 or over but we got there in the end and I sneaked in to some of the rides that were probably too fast for me but I enjoy them and I am careful what rides I do. Got a very shockling photo of the 4 of us in Tomb Raider where you shoot laser guns at coloured lights. We all look possessed with huge wide eyes. It is hilarious!! We got home about 6pm and then had Pizza delivered - apart from me of course who has had fortisip and breakfast cereal for my tea. Plus a very luxiourious bath complete with candles which when I blew them out set the fire alarm off!!
Will probably re-edit these last 2 posts as rather tired now and know my english and typing not up to scratch but thought as so long not posting I'd better do something quick!!
Also, got the computer to work and can now print off my profile - what a relief!!!
Well I did re - edit this on wed 30th april so hope it makes sense more now
Wednesday - the twins 11th birthday!! As dad had gone to work, the twins opened their cards and got a tidy sum of money to spend/save and then, of course, off to school. It feels terrible knowing that this will be their last birthday with me.
This was made worse by getting an envelope through the door with a quote from a funeral directors which even had the words 'funeral undertakers' printed on the outside of the envelope - very subtle!! This quote is £1000 less than another one but since I can't find that letter I'm not sure if I'm comparing like with like. At £2 - 3000 dying is not a cheap option!!
I brought the children plus a friend home after school before we set off for the Pizza party. We definately had a girls and a boys end!! Know which one I preferred - the girls were much more refined and quieter. It worked out quite cheaply as well so nicely surprised for once.
Thursday - a bit of a rush round before having a lift to the chemo unit with my friend and to meet my sister - in- law there as well. We thought it best to have a mob behind me to support me.
We actually saw the other consultant this time and he was happy for us all to be there. We discussed my options and he felt happy to give me 3 more doses of the current chemo a long as the scans don't show anything significantly changed. Hopefully, this time they will take a while to get booked just incase eveything is not as it should be. The chemo makes such a difference to my breathing and my swallowing especially. My swallowing is a real issue as when it gets to about 3 weeks I can I have difficulties again and actually did regurgitate my food at Pizza Hut.
We discussed and so the plan is after this chemo finished to try some radiotherapy to my tumour that squashes my swallowing ability and to my vertebrae which is looking active and causing me some pain. He hoped that would buy me some time off chemo before having my final chemo of taxol. This is the one that is related to taxotere which so disagreed with me last time. However, this would be smaller so weaker doses so should be better tolerated.
If I'm lucky that could leave me getting onto christmas which made me feel better. I'm not eligible for the new trial at my hospital as they are only taking on women with first diagnosis of secondaries and the tykerb trial is about to close but no idea when or if it will be licenced or if NICE will approve it. I don't feel very sure this will happen as they have used so many end stage or advanced women in the trials in the UK whereas in the USA where it has been shown to work, they give it at a much earlier stage.
I had a lovely lunch with my sister in law who then went home whilst my friend stayed and read a book. I got called into the treatment room quite quickly but yet again there was a problem with the bone one not being prescribed until next week. No way am I going back for one drug next week when usually I get all of them together. It was eventually sorted out without too much of a delay and we got home about 530ish.
The twins had Scouts and Woody came home very excited as he has been picked as the youngest scout from thier troop to represent the scouts in a competition over a weekend. So feel very proud of him and sorry for Laura as she has had a rather chequered time between brownies and sea scouts before joining scouts so has a lot of catching up to do.
Friday - again pushed myself to do a shop at the co-op for food for saturday's trip to the Chessington World of Adventures for Woody's birthday treat before getting the train over to Gunwharf Quays to meet up with some friends from Surrey. We had a good time, firstly shopping in M and S as I was cold and bought 2 hoody type tops but posh ones for £4.99 each before going to the Water Margin for food and drink. It was lovely food but what we didn't realsie was that it closed after lunch so got a bit rushed at the end. I missed my train so luckily one of Woody's friends brought the children back to her house after the childminder had finished.
It was than a rush as Woody had 2 friends coming back to stay and Laura was off to a sleepover party and in fact left in such a rush that she forgot to take her toothbrush and present for her friend. I went out and bought fish and chips fo everyone but me as i'd had a huge lunch and guess who was the first person to fall asleep. Hubby - with a cold and then AJ about 11pm and then the boys and finally me after midnight again!! Steroid induced insomnia!!
Saturday - hubby distinctly under the weather so I got up at 7am and cooked breakfast with help from hubby and was out of the house by 840am to drive to Chessington World of Adventures. Thank goodness for mobility scooters, steroids and a fast track system for disabled guests. The manager was not happy as I had no carer of aged 14 or over but we got there in the end and I sneaked in to some of the rides that were probably too fast for me but I enjoy them and I am careful what rides I do. Got a very shockling photo of the 4 of us in Tomb Raider where you shoot laser guns at coloured lights. We all look possessed with huge wide eyes. It is hilarious!! We got home about 6pm and then had Pizza delivered - apart from me of course who has had fortisip and breakfast cereal for my tea. Plus a very luxiourious bath complete with candles which when I blew them out set the fire alarm off!!
Will probably re-edit these last 2 posts as rather tired now and know my english and typing not up to scratch but thought as so long not posting I'd better do something quick!!
Also, got the computer to work and can now print off my profile - what a relief!!!
Well I did re - edit this on wed 30th april so hope it makes sense more now
posted by dippykate @ 10:53 PM
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