gavin
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Hi Marion,
Mum and Dad are feeling quite a bit better today and they both got some sleep last night so that helps a lot. Dads cold is pretty much gone so his grumpiness levels are falling fast, which mum is extremely grateful for! Somehow I can’t picture you getting as grumpy as my dad does with a cold, or maybe it’s “man-flu” he gets, or thinks he gets!
All the best to you.
Gavin
Here’s a link to the report Kris mentions from todays BBC news.
http://news.bbc.co.uk/1/hi/health/7791315.stm
The machine will be at a private clinic in Harley Street in London. Hopefully once this program starts then NHS patients may be refered there and costs met by the NHS. The link also contains a piece of video from todays news bulletin.
Cheers
Gavin
Hi Everyone,
Many thanks for all your kind words and support. Well Dad still has a cold, it’s not too bad now, just coughing sneezing etc but he is like a bear with a sore head when he gets a cold and is pretty gumpy with it. He’s always like that when he gets the cold, maybe thats a male thing!! I’m glad he doesn’t get them too much, but he is on the mend so that is good. Mum has been in bed since the 24th with a virus and has only really been up to go to the toilet. She is also a bit better but her mood is really low. It seems like that when one of them gets low and is in a bad mood, they drag the other down in a sort of spiral. Im hoping that once they get a bit better physically and we get into the new year that they will both perk up a bit. Anyway, dad got the date today for his CT scan, its the 24th of March. Quite a while away but hopefully then we will know how the PDT has worked and what/if happens next.
Hi Vincent,
Here’s hoping 2009 will be better for you and your family and indeed for everyone. I hope you managed to get your mum a good doctor and some good treatment for her. I wish you all the best.
Hi Marion,
I hope you had a good Christmas and I wish you all the best for the new year. I hope it brings you everything that you want. Hugs coming back across the pond your way!
Hi Jeff,
Good to hear from you. Thats good to hear that you and your family had a good Christmas. Christmas should be about spending time with the family so it brings a smile to my face to hear that you enjoyed yours with your family. Thats one of the things I liked most about Christmas, spending time with the family. I hope you will enjoy the visit of your brothers in January.
Hope is indeed always in the air. I like your talk of proving them all wrong, I like that thought very much.I hope you are right re the seasonal depression state. Mum and Dad dont really like the cold, short days etc. This year it really has seemed to affect their moods for the worse. Being stuck in the flat 24/7 is not good for them, especially mum. Hopefully by March the worst of the cold weather will have gone and spring will bring the new highs of emotion you talk of. I am doing my best to be strong for them both and taking care of myself also as you say. I will email you this week if thats ok with you?
Hi Darla,
I hope the new year will bring better things for you also. The cold dark weather here really badly affects my mums breathing. So even if she wants to go out, it makes it so hard for her and it really takes it out of her. Dad has to wrap up really well in this weather, so I got him some nice hats and gloves for Christmas!
It sounds like we can both do with the warmer, lighter days and nights of the spring. Hopefully this will indeed lift your spirits and help ease the pain some. I told mum and dad that as soon as it gets warmer, I am taking them to Anstruther, a tiny fishing village on the east coast of Scotland, about 30 miles or so from here where there is a chippy that sells the best fish and chips in Scotland! I think a lot of small day trips here and there will do them the world of good after spending the winter indooors.
Hi Kris,
My dads specialist was indeed happy with his progress so far, and if he is happy then I am happy! I really like my dads doctor and feel that dad is in the best possible hands. Dads doctor is the big chief as it were at Ninewells and was also involved in the very early stages of trials of PDT in the UK. He is also a very nice guy and spends lots of time with patients and the families.
All the best once again for your MRI scan and hopefully the new year will bring you and Hans some good fortune. Enjoy the fireworks!
Hi Tonia,
Thanks for your kind words. Up until now, I’d never really understood how the darkness and weather can affect people as it does. But after reading yours and others posts and seeing how it has hit my parents, I can see that now. Roll on the spring!
I am indeed hanging in there and hope you are doing the same.
Many thanks once again to you all and I wish all of you the very best.
Big hugs to you all!
Cheers
Gavin
Hi Kris,
Good luck with your MRI scan on the 30th, I will be keeping my fingers crossed for you! It’s good to hear that you look good and eyes, colour etc are normal.
I hope you and Hans enjoy the new year’s fireworks and celebrations and I wish you both all the very best for 2009.
Cheers
Gavin
Hi all,
Just a quick update. My dad was out this morning at the local shops and bumped into his friends wife. Well they spent quite a while talking and she was not at all hesitant in talking to my dad about his CC and everything. They didn’t talk about why dad’s friend didn’t talk to him the other week, but hopefully the next time they see each other they will be able to talk to one another and catch up etc. I’m sure she will go home and mention to her husband that she saw my dad. I know it made dad feel good to see someone he has known for years and to be able to talk as they had done for all these years. A good day.
Just thought I’d let you all know.
Cheers
Gavin
Hi Kris,
Sounds like you had some good times in Scotland on St Andrews night! All the foreign exchange students I’ve known who come to Scotland all seem to love the night just as much as you seem to have had. The haggis, tatties and neeps sure went down a treat, delicious!!! Although dad cant have a wee dram with it, but Irn-Bru is a good substitute! And yes dad loved it! And a great description of the meal you gave to Marion! The haggis used to be cooked in a sheeps stomach, but now it is more common to use an artificial casing. Wrap in tinfoil, simmer in water for 50 mins, slice the casing open and then let the aroma waft out!!! Lovely! Not long until Burns night and the next haggis supper!
Dad has his scan at Ninewells in Dundee on the 23rd of this month to see how the treatment has went so far, so obviously we are just sitting here waiting and keeping our fingers crossed. If there is anything at all that you want to know about my dads treatment, experiences etc then please just ask as I am more than happy to answer any questions. Email me direct if you do not want to ask here.
All the best.
Gavin
Hi Barbara,
Sorry to hear that the news from your dad’s tests were not as good as could have been. But as you say, at least you got some good news in that he shows no results of mets in other areas of his body.
Got no experience or knowledge of Xoleda so can’t comment on that, but I like what Cherbourg says reagarding starting it and seeing how it goes then stopping if it all becomes too much. I guess if you don’t start it then you will never know? How do you feel about that?
Wishing you and your parents the best.
Gavin
Hi Vincent,
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.
Gavin
Jeff,
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.
Cheers
Gavin
Hi everyone,
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.
Hi Rhonda,
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!
Hi Marion,
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!
Hi Barbara,
“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.
Hi Darla,
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.
Hi Patty,
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.
Gavin
Hi Vincent,
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.
Gavin
Hi Marisha,
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.
Cheers
Gavin
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
Hi Lainey,
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.
Cheers
Gavin
Hi Tess,
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.
Gavin