Well, not only did I not go to bed late on thursday, I woke up at 530am so had 3 hours sleep. These steroids are a nightmare!!
Seemed to take me ages to pack so instead of leaving at 10am as planned, we didn't leave till 1130am and then got caught up in roadworks so only just about made it on time for lunch at the MacMillan Trust Albany Lodge Guest House. This MacMillan Trust is a totally different charity to the MacMillan Cancer Support Charity that everybody is familiar with. It has been running for 23 years and is the only Guest House it runs. The charity does pay for some people who otherwise may not get a holiday or else it is £55 per person per night for full board and if there during the week, it also offers 3 morning excursions. It seemed quite good value to me. It is an old fashioned type of guest house and the food is very typical old fashioned type of English food but it is cooked really well and was ideal for us. The majority of guests were on the retired side but there was one family of 4 generations and they were good at storing frozen baby food and reheating it. There were quite a few single women there in their 50s who also had breast cancer plus some older single women and just 2 single men. It seemed sad to me that there were so many single people there and I wasn't sure whether it was the cost or if they really had no-one to go away with. That seemed very sad if that is the case and makes me so grateful for all the friends and family I've got to support me.
At risk of sounding like a marketing campaign but knowing that so many different people with cancer do read this blog and might feel they want a break near Bournemouth, I feel I should tell you a bit more about the place. For the rest of you, just skip the next paragraph.
There is a nurse on duty 24 hours a day and although there is tea/coffee etc in your bedroom, they are happy to make you a drink at anytime and offer alcohol at most times. There are 3 different rooms to sit in downstairs with only 1 having a telly in but there are tvs in the room but they desparately need replacing and that is their plan. The beds were really comfortable and there are lifts up to the bedrooms and down to the restaurant. They will cater for special diets and can loan out mobility scooters, wheelchairs and other mobility aids. They do half day trips to local places 3 times a week. The food was good and plentiful and the waiting staff really helpful. It was the usual cereal and cooked breakfast and toast first thing. Then a 3 course meal at lunch and dinner. I had trout one day and a roast dinner another. The sweets were things like strawberry gateaus, creme caramels, ice cream or cheese and biscuits so basic English food but cooked to a high standard. If you wanted to miss out lunch, they offered a packed lunch which was huge. They also own a beach hut which you can use. All in all, it was a lovely relaxing place and so many of the guests had been there frequently.
It seemed a shame we didn't know about this earlier as hubby and I could have gone away for a few days there earlier in my illness. Some of the people staying there had come from as far away as Bedfordshire and Surrey whilst there were others like us who lived much closer. If you do have cancer and just want a break, it is a good place to go.
Anyway, back to what we did!!!
After lunch, we went into Boscombe and had hoped to take the landtrain into Bournemouth but it was only operating at weekends so we drove into Bournemouth and had a walk around the gardens and did some shopping. There was a different type of craft fair there so managed to buy some different things for Christmas presents.
Saturday was a lovely warm day so we went to Compton Acres Garden. It was really beautiful as the trees were turning autumnal and there were stunning views over to Brownsea Island and Hengistbury Head. The gardens themsleves were in different styles such as a Japanese garden and an Italian Garden plus there were little sculptures in places that gave it an individuality. We managed to get across the stepping stones without falling in and there were plenty of seats for me and a coffee shop halfway round. There was also a lovely and unusual gift shop so again bought a few bits and pieces. We then went on to Wimbourne for more shopping. Think you can gather we did rather a lot of shopping!!!
Sunday - my ankles were less swollen than the night before but were still up and the weather was not good. Very windy and occasional showers. We walked as far as the papershop and then spent the rest of the day sitting in the lounge so I could do some cross stitch and other memory stuff and mum was busy knitting hats for babies in Africa for a project that Paul O'Grady is involved in.
Monday - left the guest house and as the weather was even worse than sunday we had to abandon plans to go to Exbury Gardens and so just carried on the M27 till we got to Portsmouth and did more shopping at Gunwharf Quays before coming home.
It was lovely just to spend time with mum on her own without being interupted by the family or the phone. It was not as if we had lots of 'deep and meaningful conversations' but just lovely to sit and chat or go out to places which are 'normal' - like shopping centres, craft fairs or visiting gardens rather than sit in chemo clinic and not be able to talk without being overheard and the stress of worrying what the consultant will say or howlong pharmacy will take to make the drugs up. Now that I'm eating normally, it was lovely to have the food all provided and not to have to think about what to cook, clear away and wash up etc. We did really well on the map reading front and didn't get lost which was an added bonus and of course, we did loads of shopping!!
Again, it seemed a shame not to have done this earlier. We could have gone away somewhere else but it was definately better for me in my state of health to stay in a specifically designed guest house for people with cancer as it made staying in during the day so much easier as the lounges were big with chairs the right height and with different types of backs. Footstools were available which makes all the difference to how comfortable I am and helps with my swollen ankles. It was good to be away and have that break away from my family as well - as much as I love them - sometimes I just want to be alone or with quiet adults. It was worth doing and I'm glad I was well enough to do it.
I didn't forget about my family and did worry about how they getting on and I did miss them. I had phoned home every night and it all seemed calm apart from Laura had lost her mobile phone 'somewhere in the house' on saturday and it couldn't be found and I wasn't sure having bought a top up voucher for the first time in my life, how long it stayed valid for and I didn't want to waste my money and I also wasn't sure what names and telephone numbers were stored on it. The twins had to pack sunday night as they were going away on a school trip from monday morning to wednesday lunchtime and I had a chat with them about what they were taking and just had to hope they had got all on their list. I didn't need to have worried as they are used to packing for scout camps and can follow the list provided by the school but I just couldn't help it.
Tuesday - mum came round to tidy up after the breakfast and getting off to school rush and just help me before I went to the Hospice. She did lots of housework as she didn't leave for home till nearly 2pm and she had arrived at my house at 9am!!! It was busy at the Hospice this week. I miss not having my hair done - fiddling with a wig isn't the same!!! I did have aromotherapy and she was happy to gently do this on my back. So many people are not willing due to my secondaries in my spine and shoulder blades but I just told her which bits to avoid and it felt divine. I also had reiki but due to a shortage or mismanagement of room allocations, I ended up sitting on a chair without arms or proper back support. It was impossible to fully engage and relax completely when sitting upright so didn't get my usual feeling of being somewhere else and the full benefit of a reili session. The reiki practitioner also felt she wasn't able to offer a complete session either so that is something that needs looking into. You can not get the full benefit of reiki or aromotherapy sitting in a room full of chattering people. You need to have a quiet place where you won't be interupted. The rooms just need to be allocated properly which was very frustrating this week. I also saw the physio as my lymphoedema sleeve has lost its elasticity and need a new one. The afternoon was spent making cards to sell for the hospice.
I do enjoy going there. It is my 'treat' day as I like to have reiki and aromotherapy. The manicurist is off sick which is a shame as that is always something I enjoy and now being partially bald, I don't go to the hairdresser either. I need a wig that grows so that she can restyle it from time to time!!! I missed the chiropodist last week and do need to see her as one of my big toes is trying to ingrow again after the surgery in January. I also enjoy talking to the other 'patients' who attend. They are all so interesting and have a good sense of humour. The age difference doesn't matter now but it was difficult for the first few weeks that i went. I think the next youngest must be now in their 60s so there is at least 14 years between me and them. I suppose it helps having been a nurse as I'm used to talking to people of different ages but I think most people say the same, you get used to being a group and we often don't talk about our cancer at all. One lady bought in her Land Army Medal which had been sent to her earlier this year. That was interesting but as someone else pointed out,it is sad that these women were only recognised this year for all their hard work in the Second World War so there is Gordon Brown's signature at the bottom instead of Winston Churchill's.
In the evening, we had AJ's parent's evening and had a shock that he was on a an IEP (individual Educational Plan) and had been for the last year and no-one had told us. We had definately not signed anything about this. We are really worried about AJ. His concentration is so poor and he is so fidgetly. Everyone keeps saying it is his reaction to my illness or the death of his cousin but he was like this before any of that happened and we can not get any help for him as he has not been assessed. We did manage to talk to the deputy special educational needs co-ordinator so she is going to try to get him seen by the educational psychologist and we also found out that the counsellor that he saw last year will be doing some limited work at his school so he will see her again and also get some help with his lack of confidence. Like Woody, his handwriting is a problem. Both of them have it all in their heads but just can't get it down on paper. AJ is in the middle groups for numeracy and literacy but if he would only pay attention and settle to do his work he is working above that level. His reading is excellent and his vocabulary is huge and he has a brilliant imagination so has great story ideas but just can't follow it through but is getting limited help. He is good at home at numeracy but just doesn't stay on task at school so is in a group below his ability. This really worries me and makes me feel guilty that it could be my illness that is causing him to be so unsettled but there again,we both feel he was like this before i was ill and we feel that sometimes the school just uses my illness as an excuse for his behaviour and as he is working at average, they are not so concerned. I really am worried about the children's future education especially the boys more than Laura. I feel my illness and my eventual death will stop them reaching their full potential and even though I know I shouldn't feel guilty, it leaves me feeling guilty and very sad that I will not be there to support them through the education system as well as the rest of their lives. I feel at times I'm more of a problem to everybody by being still alive than if I was dead. I know that is not true but sometimes I feel such a liability and my illness and current health stops us acting as a normal family - whatever that is!! Next week, we're staying in London and it's knowing that I can't go out all day with them and will have to come home early or sit in cafes will they are off doing something else which makes me feel bad. They all worry about me and if I do leave early then they'll worry about how I will get home and it spoils us being a complete family. When I am with them they have to walk more slowly and they will worry that I might fall so sometimes I think it will be easier for me to stay in.
Gone right off at a tangent now but I think today just made me feel uncertain of my role in life and scared for the future.
Today - wednesday - the district nurse came to take blood to make sure I'm alright for chemo tomorrow and to crossmatch for the 2 units of blood I'm supposed to be having. I'm worried that something will be wrong in my blood or that the sample will have gone missing. The oncologist wants the transfusion to start at 830am - that will not happen I can guarantee that - it will be later and I've got my oncology appointment at 10am and scared I'll get missed again. Then the cleaner came in and got things done. I booked the train tickets for going to London and for the London Eye. Being disabled means we have to have booked timed tickets so now worrying that we won't get there on time or the weather on tuesday will be so bad we won't get a view!!!
Had to pick up the twins from their school trip at 1pm and at that time had terrible stomach cramps and was really breathless and it felt too much to get them.
Hubby and I had a row about tidying up and I just don't remember what we agreed about Woody's desk and laptop so argued about that. We have kissed and made up now though.
I went out with a friend for a coffee and for her to buy a few bits she needed and ended up in tears as I feel so useless and causing a problem for people and also being so scared of the future for my family and how they will cope.
Then this evening everyone was tired and grumpy and everybody seemd to be moaning and I just wanted to run away. However, after tea it all calmed down and I spent time with each child and hubby and felt much calmer again. It also helped that the neighbour came round and got us back onto wifi and the printer working after it suddenly stopped working on monday evening. For some reason, I am beginning to panic if we can't access the internet and I have urgent paperwork I need to print and to wait from monday evening to wednesday evening just seemed too long so now it's all restored, my peacefulness has returned as well.
Oh well it is now 1am so will only get about 5 hrs sleep but was too twitchy to settle earlier and hopefully, I will have a bed so can sleep during the day tomorrow and by the time I get the steroids I will be buzzing again!!!
Another cycle of ups and downs of steroids and chemo - but should then have 2 weeks between chemo so should then recover.
Seemed to take me ages to pack so instead of leaving at 10am as planned, we didn't leave till 1130am and then got caught up in roadworks so only just about made it on time for lunch at the MacMillan Trust Albany Lodge Guest House. This MacMillan Trust is a totally different charity to the MacMillan Cancer Support Charity that everybody is familiar with. It has been running for 23 years and is the only Guest House it runs. The charity does pay for some people who otherwise may not get a holiday or else it is £55 per person per night for full board and if there during the week, it also offers 3 morning excursions. It seemed quite good value to me. It is an old fashioned type of guest house and the food is very typical old fashioned type of English food but it is cooked really well and was ideal for us. The majority of guests were on the retired side but there was one family of 4 generations and they were good at storing frozen baby food and reheating it. There were quite a few single women there in their 50s who also had breast cancer plus some older single women and just 2 single men. It seemed sad to me that there were so many single people there and I wasn't sure whether it was the cost or if they really had no-one to go away with. That seemed very sad if that is the case and makes me so grateful for all the friends and family I've got to support me.
At risk of sounding like a marketing campaign but knowing that so many different people with cancer do read this blog and might feel they want a break near Bournemouth, I feel I should tell you a bit more about the place. For the rest of you, just skip the next paragraph.
There is a nurse on duty 24 hours a day and although there is tea/coffee etc in your bedroom, they are happy to make you a drink at anytime and offer alcohol at most times. There are 3 different rooms to sit in downstairs with only 1 having a telly in but there are tvs in the room but they desparately need replacing and that is their plan. The beds were really comfortable and there are lifts up to the bedrooms and down to the restaurant. They will cater for special diets and can loan out mobility scooters, wheelchairs and other mobility aids. They do half day trips to local places 3 times a week. The food was good and plentiful and the waiting staff really helpful. It was the usual cereal and cooked breakfast and toast first thing. Then a 3 course meal at lunch and dinner. I had trout one day and a roast dinner another. The sweets were things like strawberry gateaus, creme caramels, ice cream or cheese and biscuits so basic English food but cooked to a high standard. If you wanted to miss out lunch, they offered a packed lunch which was huge. They also own a beach hut which you can use. All in all, it was a lovely relaxing place and so many of the guests had been there frequently.
It seemed a shame we didn't know about this earlier as hubby and I could have gone away for a few days there earlier in my illness. Some of the people staying there had come from as far away as Bedfordshire and Surrey whilst there were others like us who lived much closer. If you do have cancer and just want a break, it is a good place to go.
Anyway, back to what we did!!!
After lunch, we went into Boscombe and had hoped to take the landtrain into Bournemouth but it was only operating at weekends so we drove into Bournemouth and had a walk around the gardens and did some shopping. There was a different type of craft fair there so managed to buy some different things for Christmas presents.
Saturday was a lovely warm day so we went to Compton Acres Garden. It was really beautiful as the trees were turning autumnal and there were stunning views over to Brownsea Island and Hengistbury Head. The gardens themsleves were in different styles such as a Japanese garden and an Italian Garden plus there were little sculptures in places that gave it an individuality. We managed to get across the stepping stones without falling in and there were plenty of seats for me and a coffee shop halfway round. There was also a lovely and unusual gift shop so again bought a few bits and pieces. We then went on to Wimbourne for more shopping. Think you can gather we did rather a lot of shopping!!!
Sunday - my ankles were less swollen than the night before but were still up and the weather was not good. Very windy and occasional showers. We walked as far as the papershop and then spent the rest of the day sitting in the lounge so I could do some cross stitch and other memory stuff and mum was busy knitting hats for babies in Africa for a project that Paul O'Grady is involved in.
Monday - left the guest house and as the weather was even worse than sunday we had to abandon plans to go to Exbury Gardens and so just carried on the M27 till we got to Portsmouth and did more shopping at Gunwharf Quays before coming home.
It was lovely just to spend time with mum on her own without being interupted by the family or the phone. It was not as if we had lots of 'deep and meaningful conversations' but just lovely to sit and chat or go out to places which are 'normal' - like shopping centres, craft fairs or visiting gardens rather than sit in chemo clinic and not be able to talk without being overheard and the stress of worrying what the consultant will say or howlong pharmacy will take to make the drugs up. Now that I'm eating normally, it was lovely to have the food all provided and not to have to think about what to cook, clear away and wash up etc. We did really well on the map reading front and didn't get lost which was an added bonus and of course, we did loads of shopping!!
Again, it seemed a shame not to have done this earlier. We could have gone away somewhere else but it was definately better for me in my state of health to stay in a specifically designed guest house for people with cancer as it made staying in during the day so much easier as the lounges were big with chairs the right height and with different types of backs. Footstools were available which makes all the difference to how comfortable I am and helps with my swollen ankles. It was good to be away and have that break away from my family as well - as much as I love them - sometimes I just want to be alone or with quiet adults. It was worth doing and I'm glad I was well enough to do it.
I didn't forget about my family and did worry about how they getting on and I did miss them. I had phoned home every night and it all seemed calm apart from Laura had lost her mobile phone 'somewhere in the house' on saturday and it couldn't be found and I wasn't sure having bought a top up voucher for the first time in my life, how long it stayed valid for and I didn't want to waste my money and I also wasn't sure what names and telephone numbers were stored on it. The twins had to pack sunday night as they were going away on a school trip from monday morning to wednesday lunchtime and I had a chat with them about what they were taking and just had to hope they had got all on their list. I didn't need to have worried as they are used to packing for scout camps and can follow the list provided by the school but I just couldn't help it.
Tuesday - mum came round to tidy up after the breakfast and getting off to school rush and just help me before I went to the Hospice. She did lots of housework as she didn't leave for home till nearly 2pm and she had arrived at my house at 9am!!! It was busy at the Hospice this week. I miss not having my hair done - fiddling with a wig isn't the same!!! I did have aromotherapy and she was happy to gently do this on my back. So many people are not willing due to my secondaries in my spine and shoulder blades but I just told her which bits to avoid and it felt divine. I also had reiki but due to a shortage or mismanagement of room allocations, I ended up sitting on a chair without arms or proper back support. It was impossible to fully engage and relax completely when sitting upright so didn't get my usual feeling of being somewhere else and the full benefit of a reili session. The reiki practitioner also felt she wasn't able to offer a complete session either so that is something that needs looking into. You can not get the full benefit of reiki or aromotherapy sitting in a room full of chattering people. You need to have a quiet place where you won't be interupted. The rooms just need to be allocated properly which was very frustrating this week. I also saw the physio as my lymphoedema sleeve has lost its elasticity and need a new one. The afternoon was spent making cards to sell for the hospice.
I do enjoy going there. It is my 'treat' day as I like to have reiki and aromotherapy. The manicurist is off sick which is a shame as that is always something I enjoy and now being partially bald, I don't go to the hairdresser either. I need a wig that grows so that she can restyle it from time to time!!! I missed the chiropodist last week and do need to see her as one of my big toes is trying to ingrow again after the surgery in January. I also enjoy talking to the other 'patients' who attend. They are all so interesting and have a good sense of humour. The age difference doesn't matter now but it was difficult for the first few weeks that i went. I think the next youngest must be now in their 60s so there is at least 14 years between me and them. I suppose it helps having been a nurse as I'm used to talking to people of different ages but I think most people say the same, you get used to being a group and we often don't talk about our cancer at all. One lady bought in her Land Army Medal which had been sent to her earlier this year. That was interesting but as someone else pointed out,it is sad that these women were only recognised this year for all their hard work in the Second World War so there is Gordon Brown's signature at the bottom instead of Winston Churchill's.
In the evening, we had AJ's parent's evening and had a shock that he was on a an IEP (individual Educational Plan) and had been for the last year and no-one had told us. We had definately not signed anything about this. We are really worried about AJ. His concentration is so poor and he is so fidgetly. Everyone keeps saying it is his reaction to my illness or the death of his cousin but he was like this before any of that happened and we can not get any help for him as he has not been assessed. We did manage to talk to the deputy special educational needs co-ordinator so she is going to try to get him seen by the educational psychologist and we also found out that the counsellor that he saw last year will be doing some limited work at his school so he will see her again and also get some help with his lack of confidence. Like Woody, his handwriting is a problem. Both of them have it all in their heads but just can't get it down on paper. AJ is in the middle groups for numeracy and literacy but if he would only pay attention and settle to do his work he is working above that level. His reading is excellent and his vocabulary is huge and he has a brilliant imagination so has great story ideas but just can't follow it through but is getting limited help. He is good at home at numeracy but just doesn't stay on task at school so is in a group below his ability. This really worries me and makes me feel guilty that it could be my illness that is causing him to be so unsettled but there again,we both feel he was like this before i was ill and we feel that sometimes the school just uses my illness as an excuse for his behaviour and as he is working at average, they are not so concerned. I really am worried about the children's future education especially the boys more than Laura. I feel my illness and my eventual death will stop them reaching their full potential and even though I know I shouldn't feel guilty, it leaves me feeling guilty and very sad that I will not be there to support them through the education system as well as the rest of their lives. I feel at times I'm more of a problem to everybody by being still alive than if I was dead. I know that is not true but sometimes I feel such a liability and my illness and current health stops us acting as a normal family - whatever that is!! Next week, we're staying in London and it's knowing that I can't go out all day with them and will have to come home early or sit in cafes will they are off doing something else which makes me feel bad. They all worry about me and if I do leave early then they'll worry about how I will get home and it spoils us being a complete family. When I am with them they have to walk more slowly and they will worry that I might fall so sometimes I think it will be easier for me to stay in.
Gone right off at a tangent now but I think today just made me feel uncertain of my role in life and scared for the future.
Today - wednesday - the district nurse came to take blood to make sure I'm alright for chemo tomorrow and to crossmatch for the 2 units of blood I'm supposed to be having. I'm worried that something will be wrong in my blood or that the sample will have gone missing. The oncologist wants the transfusion to start at 830am - that will not happen I can guarantee that - it will be later and I've got my oncology appointment at 10am and scared I'll get missed again. Then the cleaner came in and got things done. I booked the train tickets for going to London and for the London Eye. Being disabled means we have to have booked timed tickets so now worrying that we won't get there on time or the weather on tuesday will be so bad we won't get a view!!!
Had to pick up the twins from their school trip at 1pm and at that time had terrible stomach cramps and was really breathless and it felt too much to get them.
Hubby and I had a row about tidying up and I just don't remember what we agreed about Woody's desk and laptop so argued about that. We have kissed and made up now though.
I went out with a friend for a coffee and for her to buy a few bits she needed and ended up in tears as I feel so useless and causing a problem for people and also being so scared of the future for my family and how they will cope.
Then this evening everyone was tired and grumpy and everybody seemd to be moaning and I just wanted to run away. However, after tea it all calmed down and I spent time with each child and hubby and felt much calmer again. It also helped that the neighbour came round and got us back onto wifi and the printer working after it suddenly stopped working on monday evening. For some reason, I am beginning to panic if we can't access the internet and I have urgent paperwork I need to print and to wait from monday evening to wednesday evening just seemed too long so now it's all restored, my peacefulness has returned as well.
Oh well it is now 1am so will only get about 5 hrs sleep but was too twitchy to settle earlier and hopefully, I will have a bed so can sleep during the day tomorrow and by the time I get the steroids I will be buzzing again!!!
Another cycle of ups and downs of steroids and chemo - but should then have 2 weeks between chemo so should then recover.
posted by dippykate @ 9:47 PM
0 Comments:
Post a Comment
Subscribe to Post Comments [Atom]
<< Home