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Thanks for your posts. Well we have had no joy so far in trying to get the appt brought forward so it is back to waiting for the 26th unless something happens before then. Dads mood has actually been pretty good the last few days, but he has been really tired and spent a lot of time in bed sleeping during the day. Back to the waiting game I guess.
Ron, thanks for your post. The first diagnosis was indeed extremely tough as I’m sure you know. Hearing that someone you love has cancer and that it is inoperable was not easy to hear. If dads specialist was to recommend a second opinion and could also recommend someone else knowledgeable enough about CC for Dad to see, then I’m certain Dad would want that. Even though it would indeed be gut wrenching as you say to hear the same diagnosis again, I think Dad would want that if it was recommended to him. I hear what you say about different doctors offering different treatments. Because of the location of dads tumour, radiation and surgery were ruled out at the start and PDT was recommeded at first with the possibility of chemo at some point depending on how things progressed.
As far as highs and lows go, you are so right about that! We are trying to stay positive and I know that we must do. Thanks for keeping us in your thoughts and prayers, I will be keeping you and your family in mine.
Bazel, thanks for your post and you may well be right about a type of generation gap between us and our parents. Like your dad, my parents have and are putting their faith in dads doctor, and rightly or wrongly, they are also hesitant right now to push for another opinion. This is something I do have to respect though. Right now I just wish dads hosp appt was sooner so we have some idea of what may or may not be offered to him and at least then we can think about what to do next. You are also so right about the advice being offered by everyone on this site. Everyone here is so helpfull and the advice is very much appreciated. Good luck to you.
Pam, good to hear from you again and thanks for your post. Having to do that drive on a regular basis is not ideal and it must get tiring. If I remember correctly, it is not the best of roads either. Yes Mr Tait is my dads consultant, is he your husbands consultant also? My dad really likes him and spent a lot of time with him when he was in hospital. He also spent a lot of time with us as a family explaining things.
I’m sorry to hear of the problems your husband is having with infections, chemo and his stents. I dont know anything really about chemo or how to counter the effects of the antibiotics. Hopefully someone will be along soon that can help with that. As far as trying to get him to eat, are there not drugs that can be taken that can increase his appetite? I’m sure I read somewhere that there are such drugs, but I could be wrong. Is your husband due for another scan soon? The last one my dad had was in January and that was through in Perth.
I will keep my fingers crossed for your husband and I hope that he manages to get started asap on the gemcetabine. I hope you manage to post more if you can and keep us all updated. I wish you the best of luck.
Many thanks once again to everyone and I wish you all the very best.
Such a sad day. Jeff inspired so many people and gave so much to all of us. What a wonderful human being, so kind, so caring, so positive and with a huge heart who helped so many people.
RIP Jeff, you will never be forgotten.
My thoughts and prayers are with Jeffs family.
Just thought I would do a quick update on the last few days. On Monday Dad wasn’t feeling too great, but nowhere near as bad as last week. Was really tired and had a bout of shaking so spend most of the day in bed. I wanted to get the gp out but dad didn’t think that was necessary. On Tuesday we went to the Macmillan day care centre and Dad liked it. It was just to see what was on offer there and he is now going to go once a week for a few hours on a Tuesday. It will do him good to get out and meet others. They do all sort of alternative relaxtion therapies, group activitives and their are doctors and specialist nurses there to talk with. He seems keen on the idea so we will see how that goes.
Yesterday he saw his Macmillan nurse at home and we talked about various things. I brought up the possible stent blockage etc and what everyone here is telling me and she agrees that by the time dad gets his hospital appt that it will be too long to have to wait. She is going to get in touch with the specialist to see if the appt can be brought forward so keeping fingers crossed for that. I also mentioned about getting a second opinion if no treatment was offered to dad by his specialist, and this did not go down well with my mum, she really is not keen at all on this. Dad is also wary of pushing for this and they are of the opinion that the specialist is the expert and knows what is best for my dad. Dad went to bed after the nurse left and I tried to talk again about second opinion, but mum refused to discuss it. I knew persuing this further would just lead to another arguement so I dropped the subject for now. If they decide not to ask for another opinion then I guess I will just have to respect their wishes.
The nurse also brought up the topic of future care again and had dad thought anymore about this. Talked about whether he wanted to be cared for at home or a hospice if he needed it. Dad got a bit emotional and teary eyed again, but I guess it is something that needs to be talked about. Dad wants to stay at home as long as possible, but is worried about how this will affect mum considering her health problems. I know that if this situation arises then we will get plenty of help from Macmillan and Marie Curie nurses, but the affect it will have on mum really worries him.
Thinking about what has happened over the last few weeks, I still get the feeling that we are sort of being prepared for bad news when we see the specialist. Am trying not to think too negatively about this or get too down about it as that won’t help any of us right now.
Anyway, thanks for listening.
Best wishes to you all.
Hello Eleanor, welcome to the site, although I am sorry that you have to be here. I am sure that you will find the answers to many of your questions you may have and also receive tons of support and help from everyone. My dad has been fighting this illness since last year and this site has helped me enormously. I look forward to reading your posts.
Couldn’t agree more with what Marion and Kris said!
Thank you so much Barbara.
I am so very sorry to hear of the loss of your father. I know from what you have told me that your father was an amazing, caring man who raised a wonderful, loving family. You fought this illness at Roberto’s side at all times and I know that he will have been immensely proud of you.
My heart goes out to you and your family and I will say a prayer for you all.
Many thanks once again to you all for your support, advice and for sharing some of your experiences, it is of great comfort to me. I am so grateful to this site, but I sure do wish that none of us had to be here.
I was speaking to my mum and dad about everything and what all you guys have been saying to me re stent blockage etc, and they now agree with me that the next time dad has a bad day then I am getting the gp out. Mum is still sort of inclined just to wait for the 26th and see what the specialist says, but I want something done before that.
Yesterday, I phoned the Macmillan advice line and spoke to a specialist cancer nurse. Told her everything that was happening, symptoms and what has happened with the gp coming out etc. She agreed that the stent could be getting blocked and asked if the specialist knew about this, which he does. Her thoughts on this were that if the specialist thought the stent needed looking at immediately, then he would have called dad in to hospital last week. Told her my concerns about waiting until the 26th to see the specialist and what all of you have told me and her advice was to get dads Macmillan nurse to speak to the specialist and try and get the appt brought forward. So this is something that I am definitely going to do next week. However, should dad have a bad day before then then I will get the gp out.
Good name, my dads called Ron! Thats good to hear that Lucille is looking good and showing no signs of this horiffic illness. It’s also good to hear that she is going to work and trying to keep busy and you both sound like you have a very positive attitude which no doubt will help you both enormously in this fight. I hope the scan on the 22nd brings you both a postive outcome, I will be keeping my fingers crossed for you both.
Lainy, I hope everything goes well for you and Teddy when you both go to see the oncologist this month. I will also be keeping my fingers crossed for you both. I told my mum your suggestion as to what you would do in my situtaion ie just going to the hospital and waiting to see someone. If I dont get anywhere with trying to bring this appt forward then it might come down to taking this approach. I wish my mum and dad were as forceful as you are, but as they are not then I might have to be.
Pam, welcome to the site, although I wish that you, like all of us didn’t have to be here. I’m sorry to hear about Eddie. My dad was also diagnosed at the same time as Eddie last year, also at Ninewells in Dundee. Dad spent pretty much all of last Aug and Sept in Ninewells being treated in wards 5 and 11. His specialist is based in Ninewells, although his last CT scan was carried out at PRI. Sounds as if my dad and Eddie may have spent some time in the same wards last year.
Thats good to hear that you have not had the same type of trouble in getting some help for Eddie with his stents. When Eddie did have trouble with them, did you have to get him reffered back to the hospital from his gp or did you just go up to the A+E dept at the time? If you feel up to it, I would love to hear more about your experiences.
I wish you and Eddie all the best in this fight.
Jane, thank you so much for your post and for sharing your story with me. I am so sorry to hear that you lost your sister this year and I wish that there was something that I could say to you right now that would help ease your pain.
I know what you mean when you talk of fall outs and how difficult this can all be. We have had more than our share of fallouts and arguements here during this very stressful period. I’m also sorry to hear of your sisters experiences of Macmillan nurses were not as she had hoped for. My dads nurse is a godsend to us, nothing is too much trouble for her. When she has said in the past that she can sort this or that out for my Dad, she has always managed to do it that day. This is why I am hoping that she will be able to get my dads hospital appt brought forward.
Thank you once again Jane for your kind words and I wish you and all your family my very best wishes.
Thank you all so very much once again, as always you have all been of great help and support to me. My mum and dad also want to pass on their thanks and best wishes to all of you.
My best to all of you and your families.
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.