Forum Replies Created
Good to hear from you. Sounds to me as if you are being very pro active in trying to get your mum some good treatment. It’s good to see that you have a positive action plan and are trying to get specialists to see your mum. Keep it up!
Yep chemo was an option for my dad, and still is. He gets a CT scan on the 23rd to see how things are. We were told that chemo would be an option at any time as treatment, but if he had the chemo first, then he could not have the PDT treatment. The specialist recommended the PDT and the stent first, then if neccesary chemo. Dad agreed with this as he wanted to try all possible treatments so jumping straight into chemo would have ruled out PDT. I will keep you up to date on how the treatment is going and hope you will keep us up to date with what is happening to your mum.
The best to you and your mum.
Wishing you and your family all the best. You’re a huge inspiration to me and others here. I will never forget that email you sent me and the affect it had on me, you know the one.
Here’s another Scotsman rooting for you.
Thanks to you all for sharing your experiences and stories. It would seem from reading them that what happened to my dad was not so unusual. Thinking about it, I can see how it must be hard for some people to deal with illnesses such as this and how to talk to those suffering in this way.
Such a very sad story you tell. It’s hard enough for people to deal with this illness as an adult, but it must be so incredibly hard to deal with as a 14 year old. My dad is 64 and was a bit upset at this as he felt he had been blanked a bit, so I can not imagine what a 14 year old child felt in a similar situation. So sad. Marion makes a good point that if people dont know what to say or dont want to say the wrong thing then they simply just say nothing. I guess if some adults deal with it this way then children will do as well.
I am staying positive and hope that you are doing so as well!
Good to hear from you too. I can understand what you say when you talk about people not wanting to say the “wrong thing” so saying nothing. This is something that I think I will talk to my dad about and will tell him about you and everyone else’s thoughts and experiences on this issue.
Dad had a better weekend than he did the week. No shakes, slept okayish and his mood seems to be better. I really think the shakes when they hit him really remind him about his CC, and this then drags his mood down. It was St Andrews day this weekend so I made dad and I Haggis, tatties and neeps! Mum hates this but you cant not have haggis on St Andrews day! So I made her something else.
Mum has not been to the gym or shops as it is so cold and icy right now and the cold air makes it hard for her to breath outside. However, if it comes to it soon then I will be carrying her into the gym and putting her on the treadmill! Dad has got round the problem of icy weather by just going out later in the day when it is not so cold which makes sense to me. He gets up at 6.30 in the morning to take one of his tablets, he cant have any milk for 2 hours once he takes this tablet so he used to take this the go to the shop for papers etc. Now he takes this tablet, then goes back to bed for a few hours then gets up for breakfast later on! I dont like him going out so early anyway when it is cold as he really does not have to, but he was a bit stuck in his ways!
“cancer is only a word, not a sentence”. Wow, such a meaningful phrase and so relevant to the experiences you and others here have shared and talked about. That is a lot that your dad and his friend have shared, friendship, living near to one another and being in business with each other. And both still being friends now and both coming from the “old country”. Plenty to talk about and share over the glasses of wine!
I guess your dad must have been quite upset and confused when his friend seemed a bit distant after he learned of his CC? Especially as the 2 of them went back a long way together. It’s good that your mum and his wife talked about this situation and now your dad and his friend are back to normal as you say, even if it did take quite a while. The next time I see my friend or his dad I will mention this. i was going to email him, but I’d rather wait until I bump into one of them again.
Am keeping my fingers crossed for you and your dad on Monday for his lung test results.
Thank you so much for sharing your experiences and your situation with me and I am sorry to hear that you have gone through a similar situation as my dad. That must be hard when you want someone close to you to talk to about your life and how it has changed, yet that friend does not seem to want to discuss it. I guess there are no easy answers here for us and that everyone seems to react to certain situations in different ways. You said at first that you were very hurt by this but after reading these posts maybe you were begining to understand. Well I guess that maybe some good can come out of these posts for all of us perhaps?
My dad does not really like to talk a lot about his CC, but if I push him on something then he will talk, but not a lot. Mum and I talk a lot about this, she is not one to hide away from it and hope it dissappears, but dad seems to be the opposite.
“I think it is true that many do not understand until it happens to them. I know I see a lot of things differently now than I did a few short months ago.” I agree completely with all of that so much.
Thank you so much once again Darla for sharing your situation with me.
Thank you so much for your post and for sharing your experiences. My dad has 2 friends that he grew up with, played in a band in the 60’s and no doubt got up to all manner of mischief with at the time! Actually there were 4 in the band but one of them moved away many years ago. The 3 of them that are left here have all been friends for so long and still are today. They have been a great source of support and visited dad many times in the hospital and when he came home, just as your mum’s friends supported her.
When the 3 of them get together, they talk about all sorts of stuff, both good and the not so good, but dad is not as open as they are. But when they ask him something about his CC, he talks to them about it, but only if they ask. My dads other friend I mentioned in my first post, well I guess you are right about him not being able to face this situation. Hopefully the next time they see each other this will not be the case.
Thank you all once again.
Hugs and the very best to everyone.
Sorry to hear about your mum. Just wanted to welcome you to the site and to let you know that you are not alone in this situation. My dad suffered the same symptoms as your mum this summer, yellowing skin and eyes, severe itching, no abdominal pain or fever, weakness and tiredness then admitted to hospital. All the same tests done on my dad as they did on your mum, then my dad eventually diagnosed with inoperable CC. I know what I felt like when I heard the word inoperable, so I can relate to how you feel.
Straight away, dad had a stent inserted and a “bile bag” fitted! That sure did annoy my dad having to carry that thing around with him for quite a while! Then a few weeks later he was underwent Photo Dymnamic Therapy to try and slow down the progression of the cancer. He is due for a CT scan on the 23rd of this month to see how it went, but. It wont cure him, but hopefully it will slow it down.
Some great advice and support here for you on this site. Stay positive and don’t give up hope.
All the best.
Welcome to the site and I’m sorry to hear about your dad. My dad was diagnosed with inoperable CC this summer and was not deemed suitable for surgery, too risky as the tumor was too near to major blood vessels. His first symptom was the yellowing of the eyes, which then got worse then itching, which progressed from annoying to unbearable. Dad saw his GP about this jaundice and was prescribed Piriton whilst he was waiting to be admitted to hospital.
Once admitted, CC was diagnosed and the first part of his treatment was to have a metal stent inserted. This we were told was to unblock the bile duct and allow the bile to flow which would relieve the itching and the yellow eyes. Some of my dads skin was also yellowing at this point. Anyway, he was then treated with PDT treatment and allowed home after a few weeks. Once home, he had no itching or yellowness at all, but sometimes he would get these really bad bouts of shaking. He had the first one in the hospital, but the doc’s did not know why it happened and it stopped after about 30 minutes or so. These bouts of shaking happen still to my dad, but on each and every time they happen, he has never had a fever or a temperature. His GP has told him that it just one of these things no one seems to know why it happens, but it just does.
I agree with what Marion and Lainey have said to you about the possibilty of his stent being blocked and that he should see a doctor as soon as possible. I am also not a doctor, I am only telling you what people here have told me and what my dad’s doc’s have told us and what my dad’s experiences were.
How are you today? I hope you enjoyed going to church this morning. I agree with you regarding the importance of mothers and teachers. Mums are so important to all of us, even us guys! I love my mum to bits and we have such a great relationship, we can talk about stuff and we do argue every so often, which I think can be a good thing. When we do argue, mum says her piece, I say my piece; we may glare at each other for a while, she is good at that! But then that clears the air as it were then it’s back to normal!
This illness is so hard for all of us to accept and deal with and I guess many people deal with it in their own way. Some accept the severity of it and deal with it head on, and others may try to deal with it by blocking out what they don’t want to hear. Both you and I have sat there with our dad’s and the doctors and heard things that we really did not want to hear. I do think that sometimes my dad has dealt with this by blocking out some of the things he did not want to hear, ie inoperable. Maybe your brothers have done a similar thing and dealt with this by not dealing with it and not accepting it?
I know you will do an absolutely amazing job in raising your son Barbara. You have a great heart and are a very caring person and are doing a great job in being there for your father and supporting him through this time. I am sure that he appreciates your love and support.
You are right about the abundance of laughter when my dad and his friends get together, they talk about all the old times and the things that they all used to get up to together! Dad used to play the keyboard and still likes to play it now, but he was a lousy singer!
All the best.
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