Emotional Rollercoaster and Surprise Holiday Booked
It has been an emotional time for me since before Christmas and seem to have cried most days. I think Christmas and New Year often brings back memeories as well as looking forward to the New Year ahead. When my immediate future is in doubt, it makes it hard for me to make plans ahead and everytime I do some sort of milestone activity, I think is 'is this the last time I will do that' and that makes me tearful. It is also so mind blowing that I will never work again and claiming benefits for the rest of my life.
I've spent this morning trying to sort out insurance for my debts on my credit card, phoning working/child tax credits, benefits people, the airline and GP surgery and not done the things I was planning to do like my biography scrapbook. Time has flown but then the carer has also been here as has the assessor from Warmfront. Pete and his friend have been upstairs working hard. Pete has been insulating and boarding out the loft and his friend has been adding new doors at the top of the airing cupboard so the next step is to put a shelf there and then we have somewhere to store sleeping bags etc. It's been a busy, noisy and dusty day.
It's been so frustrating dealing with the Government Departments. Apparently, we've already earnt over the threshold for this tax year for free school dinners, council tax relief and free dental and eye tests but from the new tax year we will be entitled. Then the working/child tax people said Pete would be better off working just under 16 hours even if 15 hours and 59 mins as would get more money from them but the benefit advisor I saw last week said hubby needed to work 16 hours to get more benefits. Glad I've made another appointment with the advisor on tuesday. Phoned to see if could register for 'Employment Assistance Support - the new name for Incapacity Benefit and was told they could send me out a pack as was still counted as working for today but if phone on monday then can apply on the phone!!
Still waiting for the heating to be fixed. Although Pete took the quotes yesterday morning to the hospice and left them with the receptionist, by lunchtime today, they still hadn't reached the social worker at the top of the stairs as she phoned to find out where they were. By the time she'd got them then the grant office was closed so this will be dealt with on monday now. At this rate, Warmfront might be quicker.
The airport assistance person was very helpful on the phone and so now know that we need to get to the airport about 7am and then a wheelchair etc will be organised for us to check our luggage in and they will look after us and make sure the same happens in Paris and on the return journey. Air France were happy for me to take an oxygen cylinder on board the plane but the flight we're booked on is a subsidary and they're not so if run into problems will have to use the plane's oxygen. Got the insurance through today so my health is covered once we're off the ground but can't cancel due to any cancer related illness without losing the whole cost of the holiday. Have got to get the GP to write in my notes that I'm well enough to travel . I'm seeing him on 21st so hope I remember to ask!!! I've also asked him to write a letter to say I need to carry my whole bottle of oromorph, all my other medication and AJ's sennakot plus my needles for my longline etc. It just seems so much to remember to do and organise and fit into my hand luggage.
I've just realised that I haven't actually said where we are going and what sparked this off.
Last sunday night, when I was denitting Laura's hair, she suddenly said 'Mum, I don't mean to be horrible but life will be easier when you're dead as sometimes you are a burden to us and we can't get on with things'. It was so hard not to cry. I don't think there was any malice in her words. I think what she was trying to say was that it was OK for me to stop fighting and that they would cope without me. We discussed how difficult it had been for us all in the last few months especially when I was so ill in November and nobody (apart from Peter) thought I would live. I told her it was difficult for me as well as I also didn't know when I was going to live or die and my emotions were all over the place. I just had to put a brave face on then and did the usual bed routine with the children and then went downstairs and cried with Peter over what she had said. It made me think about how I was living at the moment and my motivation to keep on fighting (hate that word when linked to cancer). I didn't really come to any firm conclusion but felt that she had given me 'permission' not to worry about their future and that when the time is right, I don't need to worry about them. Somehow, this made me think about what I wanted to do with my family and as all the children keep on about going back to Eurodisney Paris, I decided I would look into the cost and how disabled friendly it was. Peter was not keen on going and I couldn't really go on my own so my mum had said she would come with me. I talked to her on the phone and plucked a few dates and went to the travel agent. She found a brilliant deal where we are flying from our local small airport and then there will be a shuttle bus at the airport to the resort. As there are 5 of us, we are staying at the same hotel as last time which is what they wanted as it has an indoor swimming pool so I can have a rest/sleep and mum can supervise them from the cafe area. There is a separate room which comes off the main room with a set of bunk beds in and then a double bed and 2 single beds in the main room. I'm not sure how we will sleep as I think the twins will want to be in the bunks and AJ will not be happy with being in the same room as me and Grandma so am wondering how heavy the mattress is and whether to put a mattress on the floor in the bunk room so they can all be together as really neither mum or I can go on the upper bunk and from what I can remember we are too heavy anyway. I thought we would have to go to Ashford to get the Eurostar as that is usually the cheapest option but infact our local airport has worked out cheapest and it will be easier to fly as once we've got the suitcases out of the way, it will be easier to carry handluggage. the only problem is about carrying drinks on the plane so will have to buy the water once we're through the security part but it will still be cheaper to buy water there than at the French hotel and we'll have to pack some sort of snack food in the suitcases as well. We're going for 4 days and have park passes for 4 days and staying for 3 nights. I wanted to stay for 2 but it is cheaper to stay for 3 nights but of course it will be a lot more expensive as we need to buy more food and meals. As we will be arriving at lunchtime, we will be able to go to the Park then and have a meal and spend the evening somewhere or at the hotel. It will be thank goodness for Nintendoes I think. I've bought one travel plug but wondering if should buy another one. We are coming back late on thursday so again can spend the morning at the Park as I don't think we can go swimming then and I don't want the hassle of wet towels and suitcases.
I know I can hire mobility scooters there and how much it will cost so that will help me as the Parks are too big and hilly for me to cope. I don't know what rides I can do but I do want to do some and hope my back stays intact.
Not sure what I'm letting myself and everyone else in for but it was a spur of the moment decision sparked by Laura's comment.
I don't want the children to know in case something happens to me and we can't go and now of course, Pete is sad that he is not coming.
At least this time, the children are more adventurous with the food they eat so that won't be such a worry or expensive as last time as none of them would eat the croissants or pain au chocolats at breakfast so they started the day being hungry and they hardly ate anything at the Character Breakfast. Hopefully, AJ won't be afraid of Captain Hook and as we have a better camera we can take some better photos.
Emotionally, have mainly done better once the shock of Laura's statement wore off and infact now, feel much better and almost relieved that she said what she did.
The twins and I watched Mamma Mia tonight whilst AJ and Pete watched The Hulk. I really enjoyed it apart from it making me cry when Sofia asks her mum to help her get ready for her wedding. The twins couldn't really understand why it made me cry and as they asked me I had to explain that it upset me as I wouldn't be around if they get married and it upset me. Apart from that we really enjoyed having the sing-a-long version on the screen so we could sing too.
AJ bought his book home that he has been working with his emotional literacy assistant. That was quite revealing and helpful to me. It did show how aware he is and how that he feels he has got people he can talk to which is a relief. I've just realised that if I get to May, then nearly half of his life will have been overshadowed by my cancer and if you count in the time his cousin had cancer for before she died then it will be over half his life. Poor thing - what a horrible beginning to his life.
It has been an emotional time for me since before Christmas and seem to have cried most days. I think Christmas and New Year often brings back memeories as well as looking forward to the New Year ahead. When my immediate future is in doubt, it makes it hard for me to make plans ahead and everytime I do some sort of milestone activity, I think is 'is this the last time I will do that' and that makes me tearful. It is also so mind blowing that I will never work again and claiming benefits for the rest of my life.
I've spent this morning trying to sort out insurance for my debts on my credit card, phoning working/child tax credits, benefits people, the airline and GP surgery and not done the things I was planning to do like my biography scrapbook. Time has flown but then the carer has also been here as has the assessor from Warmfront. Pete and his friend have been upstairs working hard. Pete has been insulating and boarding out the loft and his friend has been adding new doors at the top of the airing cupboard so the next step is to put a shelf there and then we have somewhere to store sleeping bags etc. It's been a busy, noisy and dusty day.
It's been so frustrating dealing with the Government Departments. Apparently, we've already earnt over the threshold for this tax year for free school dinners, council tax relief and free dental and eye tests but from the new tax year we will be entitled. Then the working/child tax people said Pete would be better off working just under 16 hours even if 15 hours and 59 mins as would get more money from them but the benefit advisor I saw last week said hubby needed to work 16 hours to get more benefits. Glad I've made another appointment with the advisor on tuesday. Phoned to see if could register for 'Employment Assistance Support - the new name for Incapacity Benefit and was told they could send me out a pack as was still counted as working for today but if phone on monday then can apply on the phone!!
Still waiting for the heating to be fixed. Although Pete took the quotes yesterday morning to the hospice and left them with the receptionist, by lunchtime today, they still hadn't reached the social worker at the top of the stairs as she phoned to find out where they were. By the time she'd got them then the grant office was closed so this will be dealt with on monday now. At this rate, Warmfront might be quicker.
The airport assistance person was very helpful on the phone and so now know that we need to get to the airport about 7am and then a wheelchair etc will be organised for us to check our luggage in and they will look after us and make sure the same happens in Paris and on the return journey. Air France were happy for me to take an oxygen cylinder on board the plane but the flight we're booked on is a subsidary and they're not so if run into problems will have to use the plane's oxygen. Got the insurance through today so my health is covered once we're off the ground but can't cancel due to any cancer related illness without losing the whole cost of the holiday. Have got to get the GP to write in my notes that I'm well enough to travel . I'm seeing him on 21st so hope I remember to ask!!! I've also asked him to write a letter to say I need to carry my whole bottle of oromorph, all my other medication and AJ's sennakot plus my needles for my longline etc. It just seems so much to remember to do and organise and fit into my hand luggage.
I've just realised that I haven't actually said where we are going and what sparked this off.
Last sunday night, when I was denitting Laura's hair, she suddenly said 'Mum, I don't mean to be horrible but life will be easier when you're dead as sometimes you are a burden to us and we can't get on with things'. It was so hard not to cry. I don't think there was any malice in her words. I think what she was trying to say was that it was OK for me to stop fighting and that they would cope without me. We discussed how difficult it had been for us all in the last few months especially when I was so ill in November and nobody (apart from Peter) thought I would live. I told her it was difficult for me as well as I also didn't know when I was going to live or die and my emotions were all over the place. I just had to put a brave face on then and did the usual bed routine with the children and then went downstairs and cried with Peter over what she had said. It made me think about how I was living at the moment and my motivation to keep on fighting (hate that word when linked to cancer). I didn't really come to any firm conclusion but felt that she had given me 'permission' not to worry about their future and that when the time is right, I don't need to worry about them. Somehow, this made me think about what I wanted to do with my family and as all the children keep on about going back to Eurodisney Paris, I decided I would look into the cost and how disabled friendly it was. Peter was not keen on going and I couldn't really go on my own so my mum had said she would come with me. I talked to her on the phone and plucked a few dates and went to the travel agent. She found a brilliant deal where we are flying from our local small airport and then there will be a shuttle bus at the airport to the resort. As there are 5 of us, we are staying at the same hotel as last time which is what they wanted as it has an indoor swimming pool so I can have a rest/sleep and mum can supervise them from the cafe area. There is a separate room which comes off the main room with a set of bunk beds in and then a double bed and 2 single beds in the main room. I'm not sure how we will sleep as I think the twins will want to be in the bunks and AJ will not be happy with being in the same room as me and Grandma so am wondering how heavy the mattress is and whether to put a mattress on the floor in the bunk room so they can all be together as really neither mum or I can go on the upper bunk and from what I can remember we are too heavy anyway. I thought we would have to go to Ashford to get the Eurostar as that is usually the cheapest option but infact our local airport has worked out cheapest and it will be easier to fly as once we've got the suitcases out of the way, it will be easier to carry handluggage. the only problem is about carrying drinks on the plane so will have to buy the water once we're through the security part but it will still be cheaper to buy water there than at the French hotel and we'll have to pack some sort of snack food in the suitcases as well. We're going for 4 days and have park passes for 4 days and staying for 3 nights. I wanted to stay for 2 but it is cheaper to stay for 3 nights but of course it will be a lot more expensive as we need to buy more food and meals. As we will be arriving at lunchtime, we will be able to go to the Park then and have a meal and spend the evening somewhere or at the hotel. It will be thank goodness for Nintendoes I think. I've bought one travel plug but wondering if should buy another one. We are coming back late on thursday so again can spend the morning at the Park as I don't think we can go swimming then and I don't want the hassle of wet towels and suitcases.
I know I can hire mobility scooters there and how much it will cost so that will help me as the Parks are too big and hilly for me to cope. I don't know what rides I can do but I do want to do some and hope my back stays intact.
Not sure what I'm letting myself and everyone else in for but it was a spur of the moment decision sparked by Laura's comment.
I don't want the children to know in case something happens to me and we can't go and now of course, Pete is sad that he is not coming.
At least this time, the children are more adventurous with the food they eat so that won't be such a worry or expensive as last time as none of them would eat the croissants or pain au chocolats at breakfast so they started the day being hungry and they hardly ate anything at the Character Breakfast. Hopefully, AJ won't be afraid of Captain Hook and as we have a better camera we can take some better photos.
Emotionally, have mainly done better once the shock of Laura's statement wore off and infact now, feel much better and almost relieved that she said what she did.
The twins and I watched Mamma Mia tonight whilst AJ and Pete watched The Hulk. I really enjoyed it apart from it making me cry when Sofia asks her mum to help her get ready for her wedding. The twins couldn't really understand why it made me cry and as they asked me I had to explain that it upset me as I wouldn't be around if they get married and it upset me. Apart from that we really enjoyed having the sing-a-long version on the screen so we could sing too.
AJ bought his book home that he has been working with his emotional literacy assistant. That was quite revealing and helpful to me. It did show how aware he is and how that he feels he has got people he can talk to which is a relief. I've just realised that if I get to May, then nearly half of his life will have been overshadowed by my cancer and if you count in the time his cousin had cancer for before she died then it will be over half his life. Poor thing - what a horrible beginning to his life.
posted by dippykate @ 2:26 PM
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