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Thank you all so very much for your posts, thoughts and insight, this support is helping me enormously right now, and to be honest, is something I have missed a lot. It really does mean so much to me.
Hi Lainey, thank you so much for your honest and up front words and thoughts, they are much appreciated, and it feels good to be one of your cubs that you are protecting! Please dont think that you have to apologise for your post as you do not, I would much prefer it that someone said exactly what they are thinking, even if it may be hard to hear.
A GP is a doctor, a family doctor as Dannielle points out. Maybe I should have made that clearer in my posts and I apologise for that. As far as this GP being new, he is new to the surgery having only joined it this year, but he is not newly qualified. He is also new to Dad as he replaced Dad’s last GP who retired earlier this year. As to the GP being in on the decision process over Dads treatment, he is not making decisions re treatment after the PDT and chemo etc, the specialist is. I get the impression that the specialist had asked the GP and the Macmillan nurse to talk to Dad about what may or may not lie ahead and this is what they did the other day. If the specialist thought dad needed to go into hospital this week then I think it would have been him that would have made that decision, perhaps with the GP giving his thoughts on how my Dad looked at the time. Im not happy about this as the jaundice and dark urine worries me, but I guess all I can do right now is put our faith in what the specialist says. I did speak to my mum about maybe getting a second opinion, but she wants to see what happens on the 26th with the specialist. As to me talking to all dads doctors etc, I do. The only time I have not talked to them was when they phoned dad giving him the CT scan results as I was not there at the time.
Dad sees his Macmillan nurse next Wednesday and the jaundice and unrine is the first thing that I am going to raise with her again. Just in case anyone is not sure, a Macmillan nurse is a specialist cancer nurse who works with NHS patients in hospitals and the community. Also, Dad has been refered to the local Macmillan centre and his first visit is on Tuesday next week, to which I will be going with him. Here he wil get to speak to other patients and medical staff.
I agree that it does not seem normal or right for someone with jaundice and dark urine to have to wiat this long to be seen by a specialist. Maybe it is different in the US and patients are seem much quicker than here in the UK under the NHS. We cant afford private healthcare and have to rely on the NHS system and how it works.
Marion, thank you so much for your thoughts and kind words. I try to do my best for my parents in looking after them, I love them both dearly and would do anything for them.
As far as Dads jaundice being related to his liver function or the stent possibly being clogged, I dont know as we have not been told. We were told that the stent being clogged was a possibility, but not that it actually is. I sincerely hope that if the specialist thought it was clogged, or a good chance that it might be then Dad would have been admitted to hospital by now. Hopefully the meeting on the 26th will clear up a lot of issues. I agree with you about exploring all the possibe options as to further treatment and I know that this is something that Dad will want to do. But right now it seems like all of that is on hold until the 26th. I think what I am going to do is the next time dad feels unwell, sweating etc, I am going to call the GP out and see if he can be admitted that day.
Danielle, thanks for your kind words and for sharing your experiences with Jim and the troubles he has had with his stents. Does Jim have a plastic or a metal stent? My dad has a metal stent inside so I dont know if this has anything to do with him not being admitted to hospital as quickly as we hoped.
It sounds like you are doing a great job in looking after Jim and getting him some good and quick help. Are the Mayo clinic and where your oncologist based 2 different hospitals? I dont know too much about how the US system works but I understood it to be insurance based and this determines levels of treatment etc. Much differnt from the UK where most people are treated under the NHS, National Health Service. As far as trying to bring forward dads hospital appointment, I guess only dads GP or Macmillan nurse could really do that. Kicking up a bit of a fuss seems to have worked for you and Jim and maybe that this is something I will end up having to do.
Thank you all once again for your thoughts and posts, they are helping me a lot. If in my earlier posts I have given the wrong impression about anything then I apologise for that. I’ve just re-read this post and realised how long it is and i apologise for that also!
I wish everyone the very very best.
Well the gp and Macmillan nurse came round yesterday to see Dad. It turned out to be a lot different day than we we were all expecting. The gp had spoke to the specialist on Monday and said that the 2 of them had had a long discussion regarding my Dad.
First off all, it seems that Dad doesn’t need to go to the hospital right now but if things get worse over the next few weeks then this will change. The gp told us that this is based on the results from the last blood tests. He asked dad about any pain he was getting and just now, the only pains really are twinges in his side where the stent is. As it is right now, Dads appointment to see the specialist still stands for the 26th May.
Then the talk moved on to the future and the gp started asking Dad if he had thought much about what may lie ahead. They talked about the PDT, how it had gone, what everyone had hoped for etc. Naturally, we had all hoped the tumor would have shrunk, but it hadn’t. Then I asked about possible chemo treatment as being the next stage of treatment. Well it turns out that the gp and the specialist had discussed this on the phone and from what the gp told us, the specialist seems to be of the impression that chemo at this stage wont help my Dad.
Dad didnt seem to take this in at the time and kept saying that he was willing to undergo any type of chemo or any other treatment if it would help. At this point, the tears were welling up in his eyes and he was finding it hard to talk.Well, we all talked some more about lots of stuff and now Dad seems to realise and accept that chemo may not be an option for him. It seems to me as if the gp was sort of preparing him for his meeting with the specialist in May.
So, as to what happens next I have no idea really. Guess we will just have to wait and see. Dad was referred to the local Macmillan centre to go for couselling and to meet others in the same boat as him. I think this will do him good to talk to others he seems to be up for this. His Macmillan nurse also thinks this will be good for him too and she will be coming back to see him next week. She also had a talk with my mum and will be dropping in to see us all every week now. Dads gp is new to the practice and this is only the second time he has seen dad. His last gp retired a while ago. The new gp is really nice and Dad really liked him. He is young and spent a load of time with us all yesterday and we all got the impression that nothing would be too much trouble for him. Plus, he seems like a real people person and very easy to talk to which again, Dad liked.
So yesterday turned out to be quite a different day than what we were expecting really. And to top it off, it the whole kitchen needs to be ripped out and replaced and some of the walls in the bathroom are saturated with water and need to be replastered along with the ceiling.
Not a good day really.
Sorry to hear that your husband has had problems with his stents, I hope you are managing to get some help with them. As to my dads sweats, he seems to get them every 4 or 5 days or so and in general on those days, feels pretty rough for most of the day and stays in bed. Then the next day he seems to be fine again. Hopefully we will find out in May if the stent needs to be changed or not. Thanks for your kind words and I wish you and your husband my best wishes.
Well, many thanks to you once again for listening to me.
Best wishes to you all.
Many thanks for your thoughts and best wishes and for replying to my post. I realised yesterday after I had posted just how much I have missed by not coming to the site as much during the last few months. It really does help to talk to others, especially those who are in the same boat as myself.
Well the gp did not come yesterday. We waited for 2 hours for him to turn up then ended up phoning the surgery to be told that the appointment was booked for Tuesday and not Monday. This was not what we were told on Friday. Then the gp himself phoned after that apologising for not turning up saying that dads Macmillan nurse was not available on Monday. Dads Macmillan nurse is very reliable and comes to see him when ever Dad needs her, so it sounds as if the gp had not confirmed with the nurse that they would both be coming round on Monday. Anyway, not too chuffed about that but not much we can do about it so they are coming round today.
The water situation is getting worse and a surveyor is coming today to assess the damage. It’s not looking good, the bathroom and the kitchen will probably need to be re-plastered at the very least so more stress and hassle all round which we could do without. The flat where the water is coming from is rented so trying to track down the owner and deal with him has not exactly been fun. Dad gets flustered on the phone dealing with this sort of stuff, so I’ve been handling it all.
Lainy, I agree that the darkening urine and the re-appeaance of the jaundice should not be ignored. This is why I pushed Dad to see the emergenvy doctor that Saturday night. I did at the time suspect that the stent may have become clogged and needed to be checked. It’s thanks to you, Marion and others warning me for what to look for as signs that the stent may be getting blocked, so many thanks to you all for that advice!
I also agree that the specialist not getting in touch to discuss the CT results is not acceptable. I told Dads Macmillan nurse my thoughts on this and she agreed and I will be mentioning this to the specialist the nect time we see him. Dad has an appt to see him on the 26th May, but the gp tried to get this brought forward and if Dad has to go into the hospital this week then he will see him there. It is good that the tumour has not grown and we were happy about that. As to another go at the PDT, we were told that it can only be done once so we will have to wait and see what treatment if any is next.
Tess, good to hear from you to. It is indeed tough battling illness and hopefully the better weather will mean that mum and dad can at least get to sit outside for a while. It’s not much, but at least it gets them out of the house, if even only for a short while and it breaks up the monotony of each day.
I agree that taking some time for myself is needed and I do try and do that. I’ve been caring for my mum, my mum and my grandad before he died and now my mum and my dad for over 5 years and sometimes it does feel like its catching up on me. But I wouldnt stop doing it for anything.
I wish you and your family all the best.
Marion, good to hear from you too. Yep the leaking water has just topped off a bad few weeks but hopefully the surveyor will get the ball rollling with the repairs etc. And hopefully the weather here this summer will be good, but this is Scotland so im not counting on it too much! We were hoping to get away for a small break this summer in July for my dads 65th birthday. It would only be to a small holiday park on the coast just south of Edinburgh with everything on the site so not much walking would be needed. But a break away from home would do my parents the world of good.
I told the emergency gp, dads gp and the Macmillan nurse my concerns over the stent possibly being blocked and they all agreed that that may be the cause of the jaundice re-appearing. I sort of think that dad being admitted to hospital this week will be the best thing for him right now. Hopefully if he does go in then it wont be for anywhere near as long as the 7 weeks that he was in for last year.
Many good wishes coming back your way also.
Sophie, many thanks for your very kind words, although I dont know about being my parents hero or anything. Maybe I’ll ask my mum that the next time she’s yelling at me! Her lungs may be badly affected with her COPD, but she sure can shout at me when she wants to!
All the best to you and your family.
Thanks to you all for your words and support. I will keep you up to date and let you know what happens today.
The best to everyone.
I’m so sorry to hear about your Dad. I know you love your Dad so much and this must be so hard for you and your family right now. I wish there was something that I could do or say that would take away the pain right now.
If you need a shoulder to cry on or someone to yell at then you know that I am here for you.
My thoughts and prayers are with you and your family.
Massive hugs for you B.
Please give my best wishes to Kris and tell her that I am thinking of her and that she is in my prayers.
Do you know if Kris has spoken to her doctors about the possibility of Photo Dynamic Therapy as being one of the treatment options available to her? My dad was treated with this when surgery was not an option for him and Kris has said before to me that this type of treatment interested her. This treatment seems to be undertaken more in Europe than in the USA so maybe it would be an option for Kris.
Wishing the two of you all the very very best.
Welcome to the site. Like Darla says, I am glad that you found the site, although I am sorry that you have to be here. First of all, many thanks for sharing and I am sure that you will find the same support and encouragement that I have found from the people here. This really is an excellent site and the people here have given me great comfort and support.
Like you, I am in the UK, I live in Dundee and my dad was diagnosed with inoperable CC last summer. Because of the location of the tumour, there was no hope of any surgery at all. Like you, we had never heard of bile duct cancer and went through the same emotions as you have gone through and thought, how can this be, how can my Dad be so unlucky. He is only 64 and his general health is good. Also like you, my Mum isn’t that well either, in fact her general health is not good, she has COPD and I am their carer. I do all the chores, shopping, cooking etc and am there for them all the time.
As far as my Dads treatment went, he had a metal stent inserted and still has to this day. He was jaundiced pretty badly, itching really badly and the stent helped with that. Since no curative treatment was possible, he was offered Photo Dynamic Therapy and the hope here is that this and the stent combined will help slow down the progression of the tumour. I know this wont cure him, we were told this a few times by his docs, but slowing it’s progression down seems to me like the next best thing. I dont know if your dads docs talked to you about it’s treatment, it seems far more common in the UK than in the US, this was the first thing my Dad was offered.
I agree with what Jan says about getting a second opinion. Also, does your Dad have a Macmillian nurse? My Dad was asked about this and he said he would like the Macmillan nurse to come see him when he got home from the hospital, he was there for the best part of 7 weeks. She is great and comes to see him when he needed it, first it was every week once a week or more if he wanted. She was able to talk to him about everything in a different way than a doctor could, and in his home and in a relaxed manner. She was also able to get new prescriptions sorted out oretty quickly if needed, as my Dad did for some pain meds that needed to be upped. Another service my Dad had to use a few times was the district nurses, do you have the phone number at hand for them for the 24 hour service?
Like you, Im not sure what the next step will be or what the future holds. My dad had his first CT scan lask week since undergoing the PDT therapy a few months ago and now we are just waiting for the results.
Don’t give up hope and don’t stop fighting. If there is anything that you want to ask me, then please do so.
I wish you and your Mum and Dad the very best and I will keep all of you in my thoughts and prayers.
Hi Hans and Kris,
I’m sorry to hear of this news. I wish you both all the very best in fighting this, as I am sure that you will do. I will keep you both in my thoughts and prayers and I hope for the very very best for the two of you.
Thinking of you both.
Thanks for your kind words and support, as always, it means so much to me.
Well Dad had his scan today, he did not get any info as to the results of it, but I would assume that the results would be sent to his specialist in Dundee. Hopefully we will get some news next week? I don’t know how long it takes for these scans to be looked at etc.
I think my Dad was pretty nervous about the whole thing, he never admitted as such to me that he was, but on the drive through to Perth, he did not stop talking, especially about stuff from his past. He’s not usually like this at all, he is not much of a talker. So I got the impression that he was a bit nervous and thinking about stuff etc.
So now I guess we just have to wait it out and see what happens next. Hopefully the wait will not be too long.
Thanks to you all.
Sorry to hear your latest news. You are such an inspiration to all of us, such strength you have and I hope you keep up the fight. Stay strong, stay positive and remember what you you told me a while ago, hope is in the air.
You and your family are always in my thoughts.
Wishing you all the best.
Welcome to the site. I can’t comment on any of the chemo drugs or treatments as my Dad has not undergone any of them. I am my Dad’s carer, he was diagnosed last year with inoperable CC so no surgery was possible. The first course of treatment he was offered was PDT therapy which he underwent late last summer. He also had a metal stent inserted and still does have that. If there is anything at all that I can help you with regarding this treatmemnt and how it went for my Dad then please just ask me.
I wish you all the very best.
GavinJanuary 22, 2009 at 10:10 pm in reply to: I am on a 5 hour hospital parole so I thought I would catch you up #25671
I’m keeping my fingers crossed for you and wishing you all the very very best. Stay strong, stay positive and I am keeping you in my thoughts and prayers.
All the best.
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.
Here’s a link to the report Kris mentions from todays BBC news.
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.
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.
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.
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!
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?
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.
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!
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!
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.