May 9, 2009 at 12:55 pm #28473
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.
GavinMay 8, 2009 at 6:02 pm #28472pam-blairgowrieMember
Thanks fro your kind welcome – never get on here very much as i’ve been spending so much time on the road to the hospital. Gaving – is Mr Tait your dad’s consultant?
My husband has not been able to get to the chemo stage for months. He was on Capcetabine tablets which didn’t do much but he is fighting a blood infection. Everytime we got so far on the chemo the infection was back – high temps and rigours… it seems to ‘eat up’ antibiotics.
He was due to start on gemcetabine but for the passed 9 weeks he has been on 3/4 different antibiotics, then another stent needed in his liver, a stent in his bowel (cos the tumour was closing that) and mets on a bone in his lower back. He’s not had a scan since february so goodness knows what is going on. maybe we should be asking for one but not sure if we want to know at the moment!
Trying to get him to eat is such hard work. Any ideas to counter the effects of the antibiotics?May 7, 2009 at 3:03 pm #28471BazelParticipant
I think you are experiencing a type of generation gap with your parents (as I did with my dad). My dad put his faith and trust in his doctor (who was quite knowledgeable about cc) and was hesitant to second guess or push him. Likewise my dad didnMay 7, 2009 at 1:20 pm #28470lainyMember
Ron, thank you so much, I doubt any one could have said this better!May 7, 2009 at 1:14 pm #28469
im sure most of us here know what you are going through trying to respect your parents wishes. It is hard enough to deal with the first diagnosis let alone a second or third. Maybe if your dads doctors suggest that he seek a second opinion it might carry some weight. As someone dealing with the same monster i cannot stress the importance of another opinion, as for us we had four. i wont lie and say it was easy hearing the same opinions over and over again because it wasnt, it was gut wrenching but also necessary. But after seeing new specialist and doctors differant doors and options for treatment began to emerge, knowledge is a part of defeating this monster. The feelings your mom and dad are having now are very natural,you have some highs and you have your lows, but you must keep POSITIVE and keep going forward. Iwill be praying for you and your family…good luck….ronMay 7, 2009 at 11:07 am #28468
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.
GavinMay 2, 2009 at 10:57 am #28467
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.
GavinMay 1, 2009 at 10:00 pm #28466
You are welcome, Ron and Lucille. It is always nice hearing from you. A physician I respect highly once mentioned: seems as if only the most wonderful people contract CC. I couldn’t agree more with that statement. This site is the proof for that.
MarionMay 1, 2009 at 9:46 pm #28465
thank you Marions for all your best wishes Lucille and myself feel very fortunate to have met some truly caring and helpful friends, people we have never met but we feel like we have known all of you all our lives…..Lucille and RonMay 1, 2009 at 8:05 pm #28464
Ron….sorry, I missed your great posting. I can’t wait to hear about the scan results coming up on the 22nd. Seems as if nothing is stopping Lucille from going about her business as usual and you are making everything happen for her by taken on a “man’s job”. Fighting the insurance companies is a full time job or, so it seems, at times.
I am sending tons of good wishes your way,
MarionMay 1, 2009 at 2:07 pm #28463janecwMember
I am so sorry to hear about your Dad’s illness. We too live in the UK and I have a connection with Scotland as all my family are Scottish. My sister was diagnosed with cc back in 2007. Unfortunately we lost her on the 5th April this year.
I did used to think that she accepted everything that was put to her from her oncologist and we all wanted her to get a second opinion. She always felt that she was being a nuisance. So please don’t ever feel like that, your Dad has a right to treatment and you can request a 2nd opinion.
My sister and her husband’s experience with MacMillian nurses was not great so I am please you find your nurse helpful.
It sounds to me like you are doing are great job and I’m sure they both appreciate you. We too had fall outs and at times it could be very difficult in all ways.
take care and remember to look after yourself too!
JaneMay 1, 2009 at 12:22 pm #28462
thanks for your well wishes Lainy, and the same well wishes right back at Teddy and yourself…. i wish you both nothing but the BEST…..RonMay 1, 2009 at 1:23 am #28461
Pam…Lainy said it so well. Thank you for voicing your opinion based on personal experience which, unfortunately is based on your husband’s diagnoses of this cancer. Don’t we all wish for this board not having to exist but, are we ever glad that it does. Welcome aboard and I am hoping for many more of your posts.
My best wishes to your husband,
MarionApril 30, 2009 at 11:34 pm #28460lainyMember
Welcome, Pam and so sorry you had to come here. Thank-you, Thank-you for what you said to Gavin. I cannot tell you how this has been bothering me. When you feel something CAN be done and have to succumb to the system its just not fair!!! My husband had stents too and I just feel there is an infection or one developing. I would take Gavin’s dad and sit there until some will see me. I am sure your husband has run the gamut as well. Again, welcome and you have come to a wonderful place in this awful nightmare of a circumstance. Please feel free to stay in touch and if you are up to it, tell us about Eddie.April 30, 2009 at 9:50 pm #28459pam-blairgowrieMember
My husband is also in the dundee area and is being treated through NInewells HOspital. Eddie has Gallbladder cancer, diagnosed in august 2008. I could write a book about the past 8months. Anyway wanted to say that jaundice and dark urine – he has a stent, well lots of stents but that is another long story – usually means an infection clogging the stent. we have never had to wait for treatment with this. YOu must shout!! Shout loud and get your dad into the hospital. Don’t wait till May 26th or whenever the appointment is.
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