Woody had a fantastic time going to Wembley. It was so lovely to get my giggly, funny son back instead of this boy who wants to take charge and is worrying about me all the time and telling me to rest etc. He's only 11 and I want him to have fun so it was a relief to see he could still laugh and be silly and have fun.
Sunday morning, I had a lie in whilst the family I was staying with and Woody all went out to ply/watch football and then I had a bath - luxury.
After lunch, Heather took us back home and hopefully we will go back at half term to stay as a family and visit some London sites which we are all looking forward to. It is great to be staying in a house as if I feel too tired I can stay in and be comfortableand the others go out without me so thank you Heather for having us last weekend and taking Woody to Wembly and for the offer at half term. I feel my health is a bit precarious at the moment which is why I said 'hopefully' but I'll get onto that bit later.
Monday was Pete's birthday and also it was a year since we renewed our wedding vows. What a rollercoaster of a year.
I gave Pete a lift into work so he didn't have to cycle back after our meal out. I also needed to get a couple of things from Tesco Direct and Staples before rushing back to see the doctor about AJ.
I then managed a quick conversation with my friend, Mary from work who comes a lot of mondays to help me with housework etc and is always good with the guinea pigs. Today, she did the ironing for me which was a relief as it was building up but I felt guilty just leaving her in the house whilst I was at this meeting. I am so grateful to all my friends who help me out and always feel guilty that I can't do anything back to help them.
After this, I went to a user meeting at the Hospice and rather put my foot in it and probably upset someone. I understood that the meeting was for people who used the Hospice either as an inpatient/outpatient or used daycare. Somehow in our group we ended up with 2 couples who had never been to the Hospice and didn't know what it offered and one had been discharged from the hospice nurses books. We had very limited time and a lot of questions to answer about the hospice and for these couples all they wanted to do was to complain about the poor communication at the hospital - which is completely understandable and I agree with but it was not on the agenda of the day. I pointed out to the facilitator that the objective of the day was to discuss the hospice but she dismissed me saying that they then were being excluded from the group. They were taking over our limited discuasion time and I wanted it back on track and it was not our fault they had been invited to an event which was not appropriate to them. I was also angered by one of the couples as they have private treatment for her cancer and could not understand why her private notes were not at the NHS hospital and the NHS staff could not access the private records. This should have been explained to them when her treatment first started.
I've never been the most patient person in the world and I always have had very little tolerance in small groups when someone takes over and with facilitators who do not have the skills to keep the group on task. Probably have a big black mark by my name now. I did apolgise to the couples and explained that the invitation did say the meeting was to discuss the hospice and not the hospital. They were OK to my face but I expect they were cross with me.
After that I came home and picked up the children en route so we wrapped up Pete's pressies and went off to meet him for dinner. We had decided to open pressies etc at the restaraunt as it is so rushed in the morning.
After all this time of wanting a fajita, it was a real disappointment as it was very watery and tasteless!! Well, I'll just have to find somewhere else to have my fajita now!!!
When we were there, the twins noticed one of the tables had birthday balloons and asked about them so when pudding came, the waiter who reminded me of xfactors, Chiqo, (probably got the wrong programme as don't watch these shows!!) lit a big sparkler on Pete's birthday and we all sang happy birthday to him so that was nice. Pete had said he didn't want everybody to sing happy birthday to him but the waiter just did it once he knew - I hadn't asked.
I still didn't have much voice and was beginning to cough up disgusting stuff so thought I'd wait until morning to see the doctor.
tuesday - I couldn't get through to the doctor in the morning so thought I'd wait for the afternoon emergency surgery. My chest was really wheezy and we had to play hunt the nebuliser which is not a good idea especially when your husband decides now is a good time to have a shower!!!! AJ found it and the nebuliser stopped my wheeze and I got a lot of gunk up and felt better. I went to the hospice and had reiki and one of my wigs recut so it looks fine now. Still being complimented by these men over 80!!! I find our group so supportive despite this huge age difference between me and the next youngest who is 65 and the oldest at 90!!! Cancer does bring you together even though as a group we rarely discuss our problems openly with each other as we all see it as a 'treat' day but the nurses and volunteers are there if you want a private chat. We do all care for each other and it gives me a sense of belonging somewhere special and I feel priviledged to be able to go to daycare as there is now a long waiting list. After lunch I fell asleep and felt quite fluey so I got an appointment with the doctor who gave me antibiotics.
I get a lot out of it as I enjoy the reiki, aromotherapy, chiropody, manicure and hairdresser - well now wig cutter - and chatting with the others and doing word games as a group and it means I do eat well there. I still find it difficult to motivate myself to eat properly at lunchtime. on my own. I enjoy the craft activities in the afternoon and always come back feeling happier and more relaxed. I must have been going for about 10 months now - time goes so quickly.
If you had told me 5 years ago that I would enjoy daycare at a hospice I would have thought you mad. It's odd how your life can change and being happy somewhere can be so different to where you thought you would be and what makes you happy can change so much.
Wednesday was a bit busy in the morning with the district nurse coming, the domestic housework carer and the shopping carer coming in the morning plus the hospice nurse and then mum coming. I picked Woody up at 4pm as we had to take the PS2 back as it is faulty and he needed new footy boots and trainers so surprised myself by how far I could walk. I do notice that I am a bit wobbly at times and get a bit light headed - wonder if I'm anaemic again. Hope it's that and nothing more sinister.
Thursday - 10am appointment at chemo. Beginning to think I am waiting longer for pharmacy with these 10am appointments than I did when I had appointments at noon. Think next week I will ask for my appointment times to be changed as then I have a lot of the morning at home and still get treated at the same time!!!
Anne had rang me yesterday to see if she could visit me today as she was down from Derbyshire for a funeral. I did my nurse training with her in 1981 and we shared a flat together in 1983 - I hope I've fot the year right!! - so we arranged for her to meet me in the chemo suite. Rather an odd place for a reunion but it does give you a good opportunity for a chat and now the hospital has a new coffee/ciabatta place, you can sit somewhere better for a chat. Mum had taken me for my appointment so she had not seen Anne since 1983. It made time pass really quickly and was lovely to see her and we had a good chat about what was happening to me and how we are coping as a family and it gave her an opportunity to talk to mum as well.
She has offered to write a tribute from my friends at my Thanksgiving service so although I hope this is many months premature, if you want to contribute something to this she says I can give out her email address so she can compose something so please email me and I can pass this on. I know it is difficult and I feel awful asking but I would like others to know more about me from the different stages of my life etc so as I said I really hope this is very premature but the stage I'm now at, I'm very vulnerable and could just get an overwhelming infection or the chemo stop working and being the control freak I am, I think it is better for her to have some ideas now rather than at the last minute. I have had so many different jobs etc in my life and my friends do range from ones I met at secondary school, student nursing days, customs and excise, health visiting and family planning and NCT, First time mums group, neighbours and work colleagues and Pete's friends and the children's friends parents - have I missed anybody out??? I can't think of a secure way to put her email address here so the only option is for you to email/write to me so I can pass this info on as ideally I would rather not know who is contributing.
Anyway, back to today. I met a registrar who I'd never met before. It was not a good move as she had never me before so wlasn't famiiar with my chest and the odd noises it makes. I have so much radiation damage on my left side that it makes interesting noises that all the medical students are made to listen to!!! My right side also makes odd noises but that is cancer related and sounds different to the left!!! Good to know I have my uses then!! She wanted a chest xray first as she was concerned about my noisy chest and I felt happy about that. However, she didn't order the chemo till after I'd had the xray and she had looked at it so it wasn't ordered till about 1145. She also wanted me to have a blood transfusion tomorrow but I wanted to go to Bournemouth first thing for my break with mum. As it turned out, there are no beds till thursday so now need to get to hospital at 830am for this. Need a lift so will ask Lady Hamilton as she works that way - have left a message on your answerphone and will text you to ask properly!!!
Had a lovely lunch and caramel shortbread and wandered back to the chemo waiting room. By this stage my back and hip had had enough. It was 245pm and pharmacy said it would be at least 30 minutes before they made my chemo up. I asked in the treatment room if I could use one of their recliner chairs and they did. Unfortunately, i had not topped up my oromorph bottle so had to get the nurses to ask the reg to write me up for more so they were a bit cross with me. I usually don't need it and usually I have somewith me but 6 hours with an unsupported back and at the wrong angle for my hip and my feet were swelling as there is nowhere to put your feet up apart froma coffee table so what else am I supposed to do.
They didn't start the infusions till 430pm so was moved into the daycare area so I got a bed and went to sleep due to the combination of exhaustion from pain, piriton and oromorph. As my chemo started so late I got my steroids late hence why I'm still awake at 1am!!! We got home at 7pm - totally unacceptable for a 10am appointment.
Off to Bournemouth tomorrow so won't be online till monday afternoon/evening.
Sunday morning, I had a lie in whilst the family I was staying with and Woody all went out to ply/watch football and then I had a bath - luxury.
After lunch, Heather took us back home and hopefully we will go back at half term to stay as a family and visit some London sites which we are all looking forward to. It is great to be staying in a house as if I feel too tired I can stay in and be comfortableand the others go out without me so thank you Heather for having us last weekend and taking Woody to Wembly and for the offer at half term. I feel my health is a bit precarious at the moment which is why I said 'hopefully' but I'll get onto that bit later.
Monday was Pete's birthday and also it was a year since we renewed our wedding vows. What a rollercoaster of a year.
I gave Pete a lift into work so he didn't have to cycle back after our meal out. I also needed to get a couple of things from Tesco Direct and Staples before rushing back to see the doctor about AJ.
I then managed a quick conversation with my friend, Mary from work who comes a lot of mondays to help me with housework etc and is always good with the guinea pigs. Today, she did the ironing for me which was a relief as it was building up but I felt guilty just leaving her in the house whilst I was at this meeting. I am so grateful to all my friends who help me out and always feel guilty that I can't do anything back to help them.
After this, I went to a user meeting at the Hospice and rather put my foot in it and probably upset someone. I understood that the meeting was for people who used the Hospice either as an inpatient/outpatient or used daycare. Somehow in our group we ended up with 2 couples who had never been to the Hospice and didn't know what it offered and one had been discharged from the hospice nurses books. We had very limited time and a lot of questions to answer about the hospice and for these couples all they wanted to do was to complain about the poor communication at the hospital - which is completely understandable and I agree with but it was not on the agenda of the day. I pointed out to the facilitator that the objective of the day was to discuss the hospice but she dismissed me saying that they then were being excluded from the group. They were taking over our limited discuasion time and I wanted it back on track and it was not our fault they had been invited to an event which was not appropriate to them. I was also angered by one of the couples as they have private treatment for her cancer and could not understand why her private notes were not at the NHS hospital and the NHS staff could not access the private records. This should have been explained to them when her treatment first started.
I've never been the most patient person in the world and I always have had very little tolerance in small groups when someone takes over and with facilitators who do not have the skills to keep the group on task. Probably have a big black mark by my name now. I did apolgise to the couples and explained that the invitation did say the meeting was to discuss the hospice and not the hospital. They were OK to my face but I expect they were cross with me.
After that I came home and picked up the children en route so we wrapped up Pete's pressies and went off to meet him for dinner. We had decided to open pressies etc at the restaraunt as it is so rushed in the morning.
After all this time of wanting a fajita, it was a real disappointment as it was very watery and tasteless!! Well, I'll just have to find somewhere else to have my fajita now!!!
When we were there, the twins noticed one of the tables had birthday balloons and asked about them so when pudding came, the waiter who reminded me of xfactors, Chiqo, (probably got the wrong programme as don't watch these shows!!) lit a big sparkler on Pete's birthday and we all sang happy birthday to him so that was nice. Pete had said he didn't want everybody to sing happy birthday to him but the waiter just did it once he knew - I hadn't asked.
I still didn't have much voice and was beginning to cough up disgusting stuff so thought I'd wait until morning to see the doctor.
tuesday - I couldn't get through to the doctor in the morning so thought I'd wait for the afternoon emergency surgery. My chest was really wheezy and we had to play hunt the nebuliser which is not a good idea especially when your husband decides now is a good time to have a shower!!!! AJ found it and the nebuliser stopped my wheeze and I got a lot of gunk up and felt better. I went to the hospice and had reiki and one of my wigs recut so it looks fine now. Still being complimented by these men over 80!!! I find our group so supportive despite this huge age difference between me and the next youngest who is 65 and the oldest at 90!!! Cancer does bring you together even though as a group we rarely discuss our problems openly with each other as we all see it as a 'treat' day but the nurses and volunteers are there if you want a private chat. We do all care for each other and it gives me a sense of belonging somewhere special and I feel priviledged to be able to go to daycare as there is now a long waiting list. After lunch I fell asleep and felt quite fluey so I got an appointment with the doctor who gave me antibiotics.
I get a lot out of it as I enjoy the reiki, aromotherapy, chiropody, manicure and hairdresser - well now wig cutter - and chatting with the others and doing word games as a group and it means I do eat well there. I still find it difficult to motivate myself to eat properly at lunchtime. on my own. I enjoy the craft activities in the afternoon and always come back feeling happier and more relaxed. I must have been going for about 10 months now - time goes so quickly.
If you had told me 5 years ago that I would enjoy daycare at a hospice I would have thought you mad. It's odd how your life can change and being happy somewhere can be so different to where you thought you would be and what makes you happy can change so much.
Wednesday was a bit busy in the morning with the district nurse coming, the domestic housework carer and the shopping carer coming in the morning plus the hospice nurse and then mum coming. I picked Woody up at 4pm as we had to take the PS2 back as it is faulty and he needed new footy boots and trainers so surprised myself by how far I could walk. I do notice that I am a bit wobbly at times and get a bit light headed - wonder if I'm anaemic again. Hope it's that and nothing more sinister.
Thursday - 10am appointment at chemo. Beginning to think I am waiting longer for pharmacy with these 10am appointments than I did when I had appointments at noon. Think next week I will ask for my appointment times to be changed as then I have a lot of the morning at home and still get treated at the same time!!!
Anne had rang me yesterday to see if she could visit me today as she was down from Derbyshire for a funeral. I did my nurse training with her in 1981 and we shared a flat together in 1983 - I hope I've fot the year right!! - so we arranged for her to meet me in the chemo suite. Rather an odd place for a reunion but it does give you a good opportunity for a chat and now the hospital has a new coffee/ciabatta place, you can sit somewhere better for a chat. Mum had taken me for my appointment so she had not seen Anne since 1983. It made time pass really quickly and was lovely to see her and we had a good chat about what was happening to me and how we are coping as a family and it gave her an opportunity to talk to mum as well.
She has offered to write a tribute from my friends at my Thanksgiving service so although I hope this is many months premature, if you want to contribute something to this she says I can give out her email address so she can compose something so please email me and I can pass this on. I know it is difficult and I feel awful asking but I would like others to know more about me from the different stages of my life etc so as I said I really hope this is very premature but the stage I'm now at, I'm very vulnerable and could just get an overwhelming infection or the chemo stop working and being the control freak I am, I think it is better for her to have some ideas now rather than at the last minute. I have had so many different jobs etc in my life and my friends do range from ones I met at secondary school, student nursing days, customs and excise, health visiting and family planning and NCT, First time mums group, neighbours and work colleagues and Pete's friends and the children's friends parents - have I missed anybody out??? I can't think of a secure way to put her email address here so the only option is for you to email/write to me so I can pass this info on as ideally I would rather not know who is contributing.
Anyway, back to today. I met a registrar who I'd never met before. It was not a good move as she had never me before so wlasn't famiiar with my chest and the odd noises it makes. I have so much radiation damage on my left side that it makes interesting noises that all the medical students are made to listen to!!! My right side also makes odd noises but that is cancer related and sounds different to the left!!! Good to know I have my uses then!! She wanted a chest xray first as she was concerned about my noisy chest and I felt happy about that. However, she didn't order the chemo till after I'd had the xray and she had looked at it so it wasn't ordered till about 1145. She also wanted me to have a blood transfusion tomorrow but I wanted to go to Bournemouth first thing for my break with mum. As it turned out, there are no beds till thursday so now need to get to hospital at 830am for this. Need a lift so will ask Lady Hamilton as she works that way - have left a message on your answerphone and will text you to ask properly!!!
Had a lovely lunch and caramel shortbread and wandered back to the chemo waiting room. By this stage my back and hip had had enough. It was 245pm and pharmacy said it would be at least 30 minutes before they made my chemo up. I asked in the treatment room if I could use one of their recliner chairs and they did. Unfortunately, i had not topped up my oromorph bottle so had to get the nurses to ask the reg to write me up for more so they were a bit cross with me. I usually don't need it and usually I have somewith me but 6 hours with an unsupported back and at the wrong angle for my hip and my feet were swelling as there is nowhere to put your feet up apart froma coffee table so what else am I supposed to do.
They didn't start the infusions till 430pm so was moved into the daycare area so I got a bed and went to sleep due to the combination of exhaustion from pain, piriton and oromorph. As my chemo started so late I got my steroids late hence why I'm still awake at 1am!!! We got home at 7pm - totally unacceptable for a 10am appointment.
Off to Bournemouth tomorrow so won't be online till monday afternoon/evening.
posted by dippykate @ 10:06 PM
0 Comments:
Post a Comment
Subscribe to Post Comments [Atom]
<< Home