Forum Replies Created
Hi Marion, Jolene and Lainy.
Thank you very much all for the kind words and for your support, it does mean so very much to me. I told my mum and dad about this wonderful website and they think it is a great thing to have people from all over the world in similar situations to each other helping one another and talking about their experiences. They have no experience of computers and the internet at all, but I think my mum likes the idea of playing bingo online!!
Well today, mum actually wanted to go to the gym! I was shocked but happy as I really did not think she would go. I drove her there then the COPD gym staff took over which is great. They talked about what physio she had done, the progress in her fitness since the start of the year and how she had gone backwards with her fitness since dad got sick. Mum did 12 minutes on the treadmill, which is a lot less than the 25 minutes she got up to during the summer. I know 12 or 25 minutes does not seem a lot, but it is a mile away from last year when she struggled to get out of bed some days. She is looking forward to going back again, but can’t go next week as the gym are having a COPD Olympics! A small step today, but lots of small steps hopefully will lead to a big improvement.
Hopefully tomorrow will be a good day for my dad as he is going into the town centre on his own. He’s going into where he worked for nearly the last 50 years to see his old workmates, he’s only had 1 job in his life! He’s got to pay his works lottery subscriptions and it will be good for him to catch up with his friends at work. Then he is going to get his hair cut (badly needed!) and get new blades for his shaver. I offered to take him in the car, but he is determined to do this on his own. It’s only 10 minutes there and back on the bus so not far at all and should ony take a few hours or so. Mum is a bit worried about him doing this on his own, but I think it is good that he is going on his own as it’s the furthest he will have gone lately without someone taking him. He feels strong enough to do this and I think it will be good for him and his independence. I know he misses being able to go out and do stuff like this on his own as he used to before he got sick.
All the very best to you each and every day.
GavinOctober 1, 2008 at 11:21 pm in reply to: Dad now under hospice care- a chronology of what we experience #23123
I’m so sorry to hear what you and your family are going through right now. I’ve never been in the situation that you have, but it sounds like you are doing the very best to comfort your dad and to be there for your dad.
I just want to tell you that you, your dad and your mum are in my thoughts and prayers right now.
Welcome to the site. I’m new here as well, I only joined last week and have had the most amazing support from everyone here. I’m sorry to hear about your dad. My dad was recently diagnosed with non-operable CC and has undergone PDT therapy. I can relate to what you say about being mentally drained, both my mum and I feel like this. My dad spent nearly a month in hospital, came out for 10 days then went in for another 3 weeks.
This is such a tough situation for everyone affected by this horrific disease to deal with. I wish you and your dad all the very best.
I wish you
Welcome to the site. I only joined last week and I have found the site and the people here an amazing source of support, advice and friendship. I hope you find the same. My dad was recently diagnosed with non-operable CC and underwent PDT treatment. Being able to come here and share my experiences has been a great source of comfort.
Wishing you and your mum all the very best.
GavinOctober 1, 2008 at 10:18 pm in reply to: Short, infrequent bouts of shaking and an update on my Dad. #23181
Thanks again for all of your support, it really does mean so very much to me to hear from you all!
Many many many thanks to you for suggesting that I look into using the search function on the site. I was searching the site last night for posts relating to PDT and came across a post from early 2006. The thread was regarding PDT in the Uk and someone posted that there were only 2 trials for this in the UK, one by a surgeon in London and the other by a Mr Tait at Ninewells Hospital in Dundee. My Dad was treated at Ninewells and his specialist is Mr Tait! The treament Mr Tait and his team gave my dad was superb, he was always there for us and was more than happy to spend lots of time with us all. I always felt that my dad was in good hands with his specialist and after reading that Mr Tait was one of only 2 surgeons carrying out PDT trials in the UK, I feel that dad really is in the best possible hands. I told my mum and dad today about this, and they were both very very happy to hear this. They also both felt very happy and comfortable with being treated by Mr Tait, but now that they know that he was carrying out trials and research, they feel even better about the care my dad is getting.
Thank you very much Marion and huge hugs to you!
Thanks again for thinking out aloud again re the parkinsons and how his meds may have progressed it if he does have it. I know nothing about parkinsons or the symptoms but I think I will have to look into this further. I’m a bit wary of mentioning this to my dad right now as I’m sure you can imagine, he has a lot of other things to deal with right now. His GP did say to him previously that he did not think parkinsons was an issue then, but as you say, his meds may have progressed it.
This not sleeping at night is really hitting my dad badly. He is used to a very regular 8 hours a night every night when he was working. He never worked shifts like I did so his body clock was very regular, unlike mine as I worked all manner of different shifts week in week out. He’s only ever had 1 job and worked for 48 years for the same company doing the same job 8 to 5 every day every week. I think you might be right regarding the change in habits, excercise and metabolism brought about by this horrendous illness.
Thanks for your support. I can totally relate to what you feel when you see your dad shake. It’s never nice to see a loved one like this and like your dad, my dad is a very proud man. I will do anything and everything in my power to help my dad and make his life as easy and as comfortable as possible. Sometimes though, I try to take a step back and let dad try certain things as I do not always want to just jump in and ask if he needs help with that. He is a proud man and I repect that so much.
He had an incident in the hospital when he had to sign his name to a form for something. He really couldn’t do it and his arm was shaking really badly and this made him a bit panicky. The harder he tried, the harder it became to sign his name. I told him to stop as I could see how agitated he was becoming, but he carried on. Sometimes he really is a stubborn old goat! We made a joke about it afterwards and he was okay. I’ve mentioned in previous posts that dad has a great sense of humour and I think this helps him deal with certain situations.
I’m glad that the reikye situation gave you a much needed chuckle, it did the same to my mum and I also! I sure hope that your dad gets some sleep soon. Have you tried a few drops of lavender oil on his pillow? Our Macmillan nurse suggested this to my dad and I got some for him this week.
Many many thanks to you all and the best of wishes to you and your families.
GavinSeptember 30, 2008 at 9:43 pm in reply to: Short, infrequent bouts of shaking and an update on my Dad. #23177
Many thanks for your advice and sharing your experinces with me. I Hadn’t thought of using the search forums facility to see if there were any other threads on this, but I will do so now. Thanks also for telling me about what you and your husband did with the blankets. Since my dad never complained of being cold at the time when he shakes and shivers, I would never have thought of that. The doc’s never told us of looking out for a temperature at the same time as shivers or the importance of looking out for this, so thanks also for this. Someone else on this site I think, sorry I forget who, said to watch out for signs of a fever or temperature as this could mean that the stent was becoming blocked. I sure have learned an awful lot from everyone’s experiences here and from their willingness to share them with me and others! Such a great site!
Today we had a good day and a good laugh also. The reikye therapist from the Maggie’s Centre in Dundee came to see my dad for the first time about his lack of sleeping. She explained what a reikye massage involved and what it might do for him, dad explained his sleep problems lately and how annoying it was for him. The therapist explained that some people may fall asleep eventually during the massage, however my dad was a bit sceptical I guess but was up for trying it. My mum and I left the room and let the therapist do what she does. 5 minutes later, she comes out of the room and says my dad was seriously asleep! When we looked in, he looked like Homer Simpson sitting in his chair snoring his head off!! My mum and I had a great laugh at this and when dad woke up he thought it was very funny! It was also good to see his sense of humour was still there.
Thanks for your support Marion and big hugs to you too.
GavinSeptember 29, 2008 at 9:57 pm in reply to: Short, infrequent bouts of shaking and an update on my Dad. #23175
Thanks for your kind words and your post. I’d never heard that of PDT, but I had read that the treatment was now being expanded and used in some other cases for other kinds of cancers and treatments as well. I will keep everyone updated as to how it goes for him.
Thanks for your post. My Dad was given temazepam in the hospital to help him sleep, but that did not work. He was given Diazepam by his GP last week, but that does not seem to be working at night either. His Macmillian nurse said that they could look at stronger tablets, but my Dad wanted to give the Diazepam a try for a few weeks or so to see if that worked. We are getting him some relaxation cd’s to listen to in his bed to see if that will help, but maybe the reikye massage tomorrow may help him relax. It just seems a bit weird the he can sleep during the day and evening, but not when he should, at night. It seems like he has turned night into day and vice versa.
As to his shaking, it seems like a continuous sort of shivering shakiness, but he does not complain of being cold at all. It is not a jerky type movement and when it happens, it does happen continuously and does not just come and go. Then when it does happen again, it does not happen for a number of days. He also does not complain of feeling weak when it does happen.
I’m not too sure what you mean by blood work exactly, but Dad had blood taken pretty much every day in the hospital and the Docs were very happy with what they saw in the results in the time after the PDT was started. Dad has always had a shaky right arm for about the last 5 years and like you mention, Parkinsons was something we had thought of. However, he spoke to his GP about it and was given tablets to try and help and they did. The way that used to look was that you would never know he had this, then he would pick up a drink of juice and you could see his hand shake as he took a drink. It wouldn’t stop him doing certain things such as eating and drinking, but you could see it when he did them. Now he is unable to write or sign his name like he used to do. I’d never thought of how the photofrin might be reacting with his nervous system as you point out so many thanks for thinking out aloud as you did! Maybe it’s a combination of all the drugs he has to take just now, he has to take 7 different types each day right now.
Many thanks to you both for your posts.
Best to you both.
Many thanks for sharing your story. I’ve also only recently just joined this site and it is truly a wonderful website with lovely people that are so helpful and have given me so much support in the very short time I have been here.
I know what you mean about being scared nearly everyday, I feel that way too and having to deal with this is very new to me, but I have to be strong for my dad and I want to do the best that I can in caring for him. Its good to hear that your mum has such wonderful family and friends that are there for her and are supporting her through this.
My prayers and thoughts to you and your mum.
Many thanks for your post and for your advice, it is well and truly noted. I will be keeping a very close eye out for any of the signs you have mentioned. Once my dad had the stent inserted, he started a temperature twice in the hospital and was given paracetamol for this. It seemed to work at the time and his temperature dropped after a few days or so. Now he is at home, he is still having to take paracetamol, along with a whole lot of other drugs!
Many thanks once again for your post.
Best to you.
This is indeed a most wonderful site and I am so glad to have found it. I only joined the site very recently but the support and hope has been amazing and I am so grateful to everyone here for this. It really does mean a lot to me. I agree that the unknown can indeed be very frightening, but it helps to know that there are others who feel the same way. I wish both you and your mum all the very best for this fight. I hope you also keep posting.
Best to you both.
Many thanks for your welcome to this site and for your kind words. We are doing our best here to all stay strong and I am doing everything I can to be there for my mum and dad and to help them in any way that I can. They both mean the world to me and anything and everything I can do for them both I am doing and will do. I hope you stay strong also.
Best to you.
Many thanks for your welcome and for your kind words. I had read many of the posts on this site before I posted here myself and they have all helped me enormously. I hope that I can give something back to people here, as you have all given to me. It does feel better to know that there are others out there and that we are not alone in this.
Prayers to you and your family.
Many thanks for your post and sharing your experience with me. It’s always good to meet a fellow Scot, just a shame that it is in this manner.
I’m sorry to hear that the tumours have returned and can not be operated on. I do hope that the gemcitabine treatment works as best as possible and slows down the cancer as much as possible. I remember how I felt when my dad was told about CC and that it was inoperable, a massive shock to the system to say the least. My dad was told that any treatment would be to slow down the progression of the cancer, but would not eradicate it. This meeting was with a younger doc on the overall team, the 2nd meeting was with the specialist. Again, this time the specialist told my dad that any treatment would be to slow down the progression. The first treatment that was mentioned in both of these meetings was PDT, the specialist felt this was the best treatment at that time for my dad. We were also told that chemo was an option, but as I understood it, they couldnt do PDT once chemo had been tried. The doc felt it best to start with the PDT and if needed, then do the chemo after. We will just have to wait and see what the next stage of treatment is. My dad is 64 so I don’t know if this has anything to do with what treatment is suitable. I will keep you updated on how this treatment works for my dad. I don’t know why your surgeon dismissed this as a form of treatment for you. I’d never heard of it beofre my dad fell ill, but from having looked into it, I understand that it is relatively new. From what I’ve read about it now, it can be used as a treatment for other types of cancer.
As far as the treatment at Ninewells goes, I have been very happy with the way my dad has been treated. The specialist doctor and his team have been excellent and have treated us all very well. Very happy to answer any questions that we have had and have spend lots of time with us all. The specialist nurses there have also been excellent and helped my dad with getting a Macmillan nurse to come to see him. She came a few times to see him in hospital and help him sort out some stuff with what might be neeed once he got home. Now that dad is home, she came to see him on thursday for the first time and suggested what help he could get in trying to get to sleep at night. There is someone coming out from the Maggie’s Centre at Ninewells to do Reike type massage on him tohelp him relax and hopefully sleep better. Also, the Macmillan nurse will be coming to see him once a week at home to see how he is doing. The nurses at Ninewells were amazing, nothing was too much trouble for them and to be honest, I have nothing but praise for everyone involved in my dad’s treatment.
I don’t know what the view in Dundee is as to how people in America may or may not get this or that treament. No doubt cost of treatment would be an issue which I assume is related to the level and amount of isurance cover someone has.
Thanks very much for your post Ron. I hope all goes well for you with the CT scan on the 8th of Oct.
My best wishes to you.
Thanks for welcoming me to this excellent site. I found it very beneficial to me personally to write about what is happening just now. I didn’t know how I would feel before I posted on here for the first time yesterday, but it feels good to talk to other people about my experiences. If someone gains or learns anything at all from my posts, then I am extremely happy to have been able to help them, even if it is only a little bit.
Best to you.
Thanks for your post and for sharing with me. I’m glad that my post was useful to you regarding PDT and if there is anything else regarding PDT that I can tell you about then just ask and I will do my best to answer. My dad never felt the intense heat you talk of you having suffered with the itching. Even after seeing how the itching affected my dad, I can’t even begin to understand how it must have felt for you suffering with the itching and the intense heat.
The piriton tablets seemed to help my dad a bit, buit not enough. I totally agree with you regarding treating the jaundice and how if affects quality of life. When the doc told us that my dad had CC and that it was inoperable, one of the first things he talked of was getting the stent in first to clear the jaundice and that he would feel much better when the itching stopped. Then they would move on to the next stage of treatment.
Am really glad to have talked to you, just sorry that it has to be about stuff like this. I hope you managed to enjoy some of your time in our wee country, and perhaps enjoyed a plate or 2 of our national dish!!
My best wishes to you.