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What great news! I’m glad that you got the aggressive doctor that you wanted and it sounds like you and Teddy have a great and very active team fighting your corner! What a fighter Teddy sounds like!!!
I wish you both the very very best.
Welcome to the site, but I’m sorry that you have to be posting here. There is an amazing amount of knowledge and information on this site that has been extremely helpful to me. The support offered to me by people here has also been extremely helpful to me and hopefully you will find the same.
Your dad seems to be in a similar situation to my dad. He was diagnosed in the late summer of this year with CC. He was also told that it could not be rescected as it was in an area too close to major blood vessels. My dad was also very jaundiced for a few weeks or so before he was wadmitted to hospital, he also at the time suffered from serious itching. Once my dad was admitted to hospital and eventually diagnosed, he had a metal stent inserted to help the bile flow and had a biliary drain in for quite a few days to help drain away the bile. Dad also got the shakes for the first time in the hsopital. I started a thread about this, use the search function here and type my name in if you want to read about it. He had the shakes for a while when he came home, they usually lasted for about 10 minutes or so then they would stop. The docs do not seem to know why my dad got the shakes, but they just seem to happen and then they stop.
I don’t know if the pain your dad is feeling is down to the tumor or the tubing. I know my dad felt some discomfort once his stent was put in and it was hard for him to sleep on his right side. The stent did seem to help his jaundice though and the itching that came with that. As I said earlier, my dad’s tumor was too advanced for surgery and he underwent Photo Dynamic Therapy, would this be a possibilty for your dad? Are you based in the UK? My dad has not had chemo so I can’t comment that but I’m sure others will be along soon to talk about their experiences.
I wish I could tell you how this will unfold for your dad, but I can’t. I don’t know how it will play out for my dad either so all I can do is tell you about his experiences and how it has gone so far for him.
I wish you, your dad and all your family the very best.
Just to let you know that I emailed you regarding brochures, I used the email address that you have given in the posts in this thread. I would be delighted to distribute some brochures here in Dundee and the surrounding areas if there are any left.
Hope to hear from you soon.
What an amazing man your father sounds like! Such a big decision for someone to make to leave his country of birth to persue his dream of a “better life” for his family. It sounds like Roberto has made a great success of his life and dreams in America for all of you, how many people can say that they own their own company! To start and build any company takes hard work, dedication and desire, and it sounds like Roberto has all of these qualities. I know what you mean with regard to parents making sacrafices for their families and their children. My mum was a primary school teacher here in Dundee before she gave birth to me, I think in America this would be called an elementary school teacher? Once I was born, my mum gave up her job and her career, not because she had to, but because she wanted to be there to raise me. This is the way that my parents wanted to raise me, so mum gave up her job to stay home with me. My Dad (Ron), like your dad knows all about hard labour and I guess has a similar educational background to Roberto. He started work at 15 and worked with the same company doing the same job for nearly 50 years, he was a compositor. Mum never went back to teaching or a full time job, not because we had loads of money as a family, we didn’t, but because mum wanted to be at home to raise me and be there for me after school etc. They gave up a 2 income lifestyle, big home, foreign holidays, cars etc to raise me. I’m an only child and they gave up the material things for me when I was young, so I can so relate to what you say with regard to your parents making sacrifices for you then and how you can repay them now with you being there for your father.
It was indeed very hard to hear the word inoperable for all of us, obviously most of all for my dad. He was sitting in a chair with a drip in his arm hanging from one of these tall stands on wheels, mum was sitting in her wheelchair that we got at the hospital entrance. I felt stunned on hearing the word inoperable, but I had to be strong for them both. I guess no one likes to hear stuff like that, but as you know, we all have to deal with it and handle it as best we can.
Your mom sounds like a determined shopper! Driving all that way for a bargain and something on sale! At least now with gas prices falling, she can say to your dad that she no longer has to spend $10 to buy the $4 worth of grapes, the gas now only costs $5!!!!
I’m glad you like reading my postings, this is such a great site and it feels good to talk about things, it really does help. Mum has big plans for next week, bingo Monday, bingo Tuesday and shopping on Wednesday! Dad also has big plans, worrying about Mum’s spending on Monday, Tuesday and Wednesday! I think my dad’s friends are coming to visit him on Monday, the 3 of them have been mates since the early 1960’s when they were in a band together, the Beatles they were not! I recently saw a picture of them from the 60’s when they were all on holiday in Blackpool. Each of them trying their hardest to look like serious rockers! Although they looked like a trio of hooligans to me!! It does dad good to catch up with his mates and talk and stuff. They used to meet up every month or so for a few beers at a local pub, but now the other 2 come to see dad at home and I know dad feels really good after they visit as they all have such a great laugh together.
It’s good to speak to you. I think this is the first time that I’ve posted to you? Wow, Aberdeen sure is a long way from Houston! Are you in the oil business by any chance? I used to have quite a few friends in Aberdeen and have spent many an enjoyable night out up there! A lot colder up there than it is in Houston right now! It would indeed be nice to meet you the next time you visit here. Aberdeen is only 1 hours drive or so from Dundee and I’m sure my parents would love to meet you, as would I.
Cheers and the best to all of us.
Great news Lainy!! Hope it goes well for you and Teddy. Shows what fighting these insurance companies can do!
All the best to you both.
Thanks once agin for your kind words. Well dad went out this morning and it went very well. He got his hair cut and went into his work to see all his friends. It was good for him to catch up everyone and he just sat down whilst they all came to speak to him when they had time. He took it very easy so didn’t get too tired out and sat down when he needed to. I think it has done wonders for his confidence to be able to go out alone, so hopefully he will do more it it. he was tired when he came home so he went to bed for a few hours. Whilst he was sleeping, Mum and I went to the supermarket. This was the first time she had been there in months. We just took it very easily, but she didn’t get all puffed and out of breath even once and she loved it! I think she was very excited about being actually able to spend money again on things she wants! For months and months now, I’ve been doing all the shopping and I try to vary things that I buy for them both. Mum really enjoyed having the opportunity to buy anything that she wants, it was the first time that she had actually handed over cash to someone in a shop for stuff she wanted and this is a big thing for her to be able to do so. Next week she wants to go shopping twice! Dads not fussy, he eats anything and everything that I cook for him!
Hi and welcome to the site, I’m glad you found it and hopefully you will get as much from it as I have. Recently I haven’t had as much time as I would have liked to post on here, but it is an amazing source of support and strength to me and everyone is so warm and welcoming. I’m sorry to hear about your father and that the chemo does not work for him. It sounds to me like you and your family are doing an amazing job of supporting your father through this time. It sounds like your dad and mine are in a similar situation as to how they are dealing with this and with how they may have reacted to what the doctors have told them. I sometimes think how I would react in this situation and how I would cope with it. I like to think that I would want to know everything, both good and bad and deal with it that way. But, I’m not in my dad’s situation so I guess I really don’t know how I would handle this. I do know however how I felt when I heard the word inoperable for the first time when the doctor was talking about my dad’s illness. Right now, we are just going to sit and wait and see what the outcome of the scan on the 23rd brings. If the news is not too good then we will deal with it then.
It’s good that your dad has his business interests to keep him occupied right now and that he keeps up to date with the news and the papers etc. Although I guess that keeping up to date with the stock market these last few months hasn’t made great reading for him! I also love following the markets both here and in the USA but have not had any money invested for a few years. It’s good to hear that you and your family have taken the approach of fighting this disease to win. I have always tried to be as positive as possible with my dad with dealing with all of this. If we don’t have hope and positive thoughts then what have we got?
With regard to my mum, she is 66 and seems to have a greatly improved attitude after yesterday’s session at the gym. It seems like it is on the road back to where it was this summer before dad got sick. When she does the treadmill, it is on the very slowest speed possible right now that she did her 12 minutes. But considering what she was like last year, the slowest speed on a treadmill is like a sprint compared to back then. I am going to keep encouraging her to get to the gym every week, as when she gets better at walking etc and her health improves then so my dad feels better about her health and this makes him happier and less worried. Although the better my mum and her walking gets, the more she will want me to take her shopping and no doubt dad will be worrying about her spending!!!!
Hugs, prayers and the best to all of you and your families.
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.