Topic: Update on my Dad

Hi everyone,

I thought I would do an update on my Dad just to let you know how he his doing as I haven't had much time lately to spend on the site. By the way Jeff, many thanks for your email, it meant a lot to me.

For those of you who don't know, my Dad's CC was inoperable so he underwent a treatment of Photo Dynamic Therapy in Ninewells in Dundee. He was released from hospital about 3 weeks after the laser treatment but had to wear gloves, sunglasses and a hat when outdoors due to his skin being extremely light sensitive due to the Photofrin drug used in the the treatment. Well, now he has been able to go outdoors without the gloves, glasses and the hat for a few weeks. This is a big thing for my Dad as he was starting to get a bit self conscious when outdoors dressed up as he had to be. It took a few weeks longer than expected for the effects of the Photofrin to wear off and this was getting my Dad down a bit, although he wouldn't admit it.

Dad was having serious sleeping problems when he came home, he could sleep during the day but not at night. His Macmillan nurse was round to see him every week and she thought Diazepam might help so he was on this for a week or so, but it did not help with sleeping. By this point Dad was pretty desperate to get some sleep at night so she suggested trying a sleeping tablet, Zopiclone and some relaxtion cd's to help him relax during the evening. Well the relaxation cd's certainly helped him during the day! The day after he got them I went round to the house to find him lying flat out on his back on the living room floor fast asleep with them playing on the stereo! Now, he is going to bed at night without taking the Zopiclone and if he sleeps then great, if he can't then he takes one after a while. He did have a fall one night after starting to take the Zopiclone. He took one for about the third night or so since starting them with the intention of going straight to bed, then the football came on the tv so he decided to stay up and watch it for an hour. Mum had gone to bed so he was up on his own watching the tv. When the football finished he stood up from his chair and fell down, then struggled to bed and fell again before getting to bed. This has only happened once which makes me feel that it might have been the effects of the Zopiclone kicking in whilst he was watching the tv then standing up.  After that incident, he started taking the tablet then going to bed immediately!

As far as pain goes, he was told to take paracetamol, 2 tablets 4 times a day which he did for about 2 weeks or so. Then he developed a pain in his stomach area. His Macmillan nurse then changed that to codeine tablets which he now takes 2 tablets 3 times a day and they seemed to work and still do. He was also for a while getting a pain in his back very infrequently, but that now has gone.  Dad was getting bouts of shaking when he was recently out of hospital, I started a thread on this. Well he hasn't had any shakes for about a month or so which is good. He spoke to his GP about this but he didn't know what caused it.

Dad's mood has greatly improved recently now that he can go out as normal and that he is sleeping so much better. His sense of humour is still good and his appetite is back with a vengeance, he can eat for Scotland again! He still gets very tired and this can come on very quickly, which when it does, he goes to bed for a nap. But, my Mum thinks that a lot of the time he is making the effort just when me or other people are around him. At first I didn't think this was the case as he was making great progress from when he first came home from the hospital. But now I see where Mum is coming from. Sometimes, dad just sits there and stares at the tv and seems disinterested in general and doesn't talk much. Mum says that a lot of the time when i'm not there he doesn't really talk much to her. He's not being rude or anything, but just seems a bit vacant sometimes. He also doesn't really like talking about his illness and when you do, I can see his mood change pretty quickly. He doesn't get angry or anything, he just seems to well up and not talk about it.

Last week he got his appointment for his CT scan at Ninewells, it's on the 23rd of December. We're not really too happy about the delay in this as he was told it would be about 6 weeks or so after he had the PDT treatment. He had the treatment quite a while ago and he should have had this scan a lot quicker than what it is scheduled for. Something that is really worrying Mum and I about getting this scan is this; Dad mentioned to my Mum that he was looking forward to getting the scan to see how the treatment has worked. Ok, fair enough, we all want to know. Then he said something to Mum about how this scan would hopefully show that the PDT had cured him. Mum told me about this instantly as she had no clue as to how to deal with that, and to be honest, neither do I. Dad said to mum that a doctor at the hospital told him that the treatment would cure it. The 3 of us sat there twice, once with one doctor who initially told us about CC and that his was inoperable and about PDT and the other time with Mr Tait, the specialist who told my Dad twice that his was inoperable and what the PDT would hopefully do for him, ie slow the progression down. Myslef and my mum understood at the time what this meant and we both felt that Dad did also. However, it appears this is not the case now. Mum and I both don't know how to handle this or what to say. What I think has happened is that when the Doc told him about getting the stent inserted, he was told that this would help sort the jaundice and the itching and make him feel better. Maybe Dad picked up on this and thought it was the cure for everything and not just the jaundice. Anyway, I guess this is something that we willhave to deal with once he had had his CT scan.

I know all of this is also affecting my Mums health, she has COPD and her health has taken quite a few steps backwards. I took her to the Docs on Saturday for her flu jab and this was the first time she had been out of the house since the day before my Dad got out of the hospital, a few months ago. She did 12 weeks of physiotherapy for her breathing and walking and was making immense progress. Following on from this, she had the option to go to a local gym where once a week thay have classes for COPD patients. Mum was really up for this and was all set to go, then Dad got sick so she got stressed and worried and missed the weekly classes when we were going to the hospital every day. Now, I think she has lost her confidence and maybe her will to go each week. Her next class is tomorrow, but I don't expect she will go. I know this concerns my Dad also, Mum worries about Dad and talks to me about him and Dad worries about Mum and talks to me about her.

Anyway, thanks for reading this and apologies for the length of my post!

The best to you all.

Cheers

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

2 (edited by marions Fri, 14 Nov 2008 19:30:01)

Re: Update on my Dad

Hello Gavin,
Thanks for sharing and no apologies needed, ever.   I have heard of others with similar stories about light sensitivity extending far beyond what had been predicted by their physicians.  I am happy to hear about your Dad being able to go outdoors without having to cover every inch of his body. 
Sounds as if the night sleeping has worked itself out well enough, also.  Great news. 
By each of your parents confiding in you in order to protect the other demonstrates the wonderful support you are to each your Mum and your Dad.  Two loving people have raised a wonderful son.  Hopefully, your Mum will allow herself a bit of tending to her own needs as that is of most importance for her wellbeing.  It is always nice hearing from you and I am looking forward to your report on the 23rd of December.  And you take real good care of yourself, too.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on my Dad

Gavin,
So glad that you wrote.  I've been wondering how you and your family is doing.  Thanks for the update.  Will be thinking of you all and sending lots of good thoughts and prayers long distance to you.

Take care of yourself.
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Update on my Dad

Hello Gavin. I was just thinking about you this morning and that we had not heard from you and here you are. What a wonderful son you are, your parents are truly blessed with you!  We are WISHING for a good scan result!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my Dad

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.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on my Dad

Gavin

It is so good to hear from you letting us know how your dad is doing.  I hope his trip tomorrow goes well!  There is something about getting back to life as usual that gives one hope, maybe a sense of control over a situation where one feels very little.  It is so good that you are there for them both...they are very lucky to have you and I'm sure you are grateful for every day that you have both of them with you.

All the best to you!

Jean

Re: Update on my Dad

Hi Gavin! So glad to hear about your dad's progress.  The hardest thing is to let go again but so necessary for dad's recovery! Keep us posted and you are a terrific son and your parents are so blessed to have you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my Dad

Hi Gavin,
I am new to this site, but so glad I found it.  My father was diagnosed with CC July 07, and we were lucky enough that the tumor in his bile duct was operable.  He did have 5 out of 7 lymphnodes and unfortunately a year later several nodules have been found on his lungs.  He did chemo(gemzar last October-through March) but, as I am learning, chemo doesn't work on my fathers type of cancer and location. 
You touched on a topic with your father that my family has struggled with and finally come to a conclusion about.  My father sits in on almost all of the discussions with the Drs- Oncologist and Pulminologists, and for some reason he doesn't really listen.  At first I thought it was an act, that he really heard what they said but doesn't want to talk about it, but then I realized he only hears what he wants.  He doesn't want to hear a death sentance, and so he doesn't hear it.  I think everybody deals with illiness and their destiny differently.  Some people want to be prepared, and maybe they go out and live their life to the fullest, and some people find out they may not live much longer and they get depressed, close up and live out the rest of their life in an unhappy state.  The latter would be my father, he needs to think he is going to beat this cancer, that is what gets him up in the morning.  He still reads the paper, watches the news, looks at his stock report, makes the schedule for his employees(he owns a plumbing company) sometimes goes on job estimates, he tries really hard to eat the right foods(I am kind of tyrant in that department) we take long walks, atlest a mile everyday.  In our case, if he tought he was not going to beat this cancer, and any treatment he was doing now was palliative, he wouldnt have any fight in  him.  So we chose to take the approach as a family, that we are fighting this cancer to win!  It seems your father may have the same mentality as mine, I dont think a discussion is necessary about his prognosis.  Maybe his venture out yesterday(I hope it went well) was possible b/c he has hope.....Anyway sorry to ramble. 
By the way, about your mom,  I have a personal training liscense, and I don't know many older people(how hold is your mother exactly?) that can walk 12 minutes on a treadmill especially if they have health issues.  I suspect if she keeps it up and keeps up her spirit(mental attutude obviously so important) she will be up to 25 minutes in no time.
You seem like an amazing son, your parents are lucky to have you.  Prayers and positive thoughts going out to your family for the 23!
Barbara

The  Lord is my shephard

Re: Update on my Dad

Hi everyone,

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!

Barbara,

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.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on my Dad

Gavin,
My father(Roberto) made so many sacrifices for myself, my brothers and my mother, when he left his country(Italy) and all of his family to come to America for "a better life".  He knew, with only a third grade education he was going to work hard labor the rest of his life to give his family a home and food on the table.  So it is a very small sacrifice for me to make to be his ears in this cancer situation that has invaded his body.  Although it is painful on my ears some of the words I have to hear doctors utter, I can take the emotional pain, because it is nothing compared to the physical pain these cancer sufferers endure.   I can't imagine what it would feel like to hear the word "inoperable", I thought "growth" "malignant" "lymphnodes" and "distant Metastasis" were horrible enough......
Hooray, your dad made it out and had a good time visiting!  I love when my dad has a plan and it happens. Ah, the things one takes for granted when healthy.     
By the way, that is so cute how excited your mum gets to go grocery shopping, and what a great son you are to take her.   Careful though, the highlight of my moms day is the grocery store, and she goes everyday, sometimes for one item, or she will drive 10 miles to get something on sale.  My dad who cant stand any kind of shopping or driving far for that matter, is always laughing b/c he says she will spend $ 10.00 in gas to drive to some produce store and buy $4.00 worth of grapes.  It's true though.  I dont say anything to her - that might be me one day when Im retired!

The  Lord is my shephard

11 (edited by marions Fri, 14 Nov 2008 00:18:45)

Re: Update on my Dad

Gavin....it is always wonderful to read your postings.  Your Mum's shopping and Gym attendance and your Dad's independence streak surfacing again, make for a lovely story.  And, each of your parents feeling better about the other's physical improvement warms my heart.  What a wonderful family you are.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on my Dad

Barbara....I can relate to your Mom...a sale is a sale and so hard to give up.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on my Dad

Gavin - you are such a great son.  I agree with Marion - I love to see your updates and hear of the wonderful progress both your parents are making.  Hopefully next time I'm in Aberdeen I will have the good fortune of heading down to Dundee and meeting you and your wonderful family.

30-something caregiver

Re: Update on my Dad

Hi everyone,

Barbara,

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!!!!

Marion,

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.

Sara,

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.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on my Dad

Hi Gavin,
Wow, the two most important, but thankless jobs in the world: "mother", being number 1, and a "teacher" number two,  and your mom was both!  What a statement of love and devotion both your parents made for you, by sacrificing material possesions, to stay home and be there for you.  Your story touches my heart on many fronts, first of all I have two brothers, who I love dearly and do not think are bad prople at all, but they are in denial about our fathers illness. They were there for initial diagnosis, but have never talked to a dr. since.  They visit our dad at the hospital on his many stays there, they love and care abouy him, but they cant accept this illness, and refuse to even understand what is going on with his body.  I was kind of attributing their behavior to being a "guy"thing, but you Gavin, cancel out that theory.  You are an amazing son, that although it pains you,   are taking on the role as caretaker for not one, but both parents.  They raised a wondeful, loving, responsible son, they should be proud.   I, two, have an only child, a son, and my number one goal is to raise my child to have heart. 
That is awesome that your dad has old friends "bandmates"
and they now make the effort to come see him.  I am sure the laughter is abundant when they get together.  What instrument  did your dad play?
O.K.  off to church, I
ll be sure to get some praying in for the many(unfortunately) people on this site.
Barbara

The  Lord is my shephard

Re: Update on my Dad

Hi Barbara,

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.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.