Forum Replies Created
May 31, 2009 at 1:21 pm in reply to: Photography to raise awareness of Cholangiocarcinoma #29145
These pictures were excellent and anything that helps raise awareness is always welcome.
Glad to hear that you’re feeling a bit better Lisa.
Best wishes to everyone.
I just wanted to join with the others and welcome you to the site, although I am sorry that you have to be here. This site is excellent and the people here are amazing and will give you so much help and support. My dad was diagnosed last summer and everyone here has been so good to me through these tough times.
I guess there is no right or wrong answer as to how each person should deal with all of this. However, I do agree with the others and feel that talking about it and opening up to others will not only help you in this fight, but also those around you. I know that when my dad was diagnosed, I wanted to find out as much about this as I could. It sure is overwhelming at times having to deal with all of this so I believe it will help to have people to turn to, or even yell at if need be! My mum likes yelling at me so I guess that works for her!
As far as waiting mode goes, everyone here has been and goes through all of that. Waiting, for treatment, scans, results and to see doctors. Yeah that gets to be a bit of a drag, but when you come here and talk to others, at least they know what you are going through so it helps knowing that you are not alone in that feeling.
My best wishes to you and your husband.
Like Tess’s dad and Lisa, my dad also had bouts of sweating that like your boyfriends, used to just come and go. When it happened, it seemed to last for a few hours at a time then would just stop. My dad has a metal stent inside and when he got these bouts of sweating, he would feel pretty rotten in general.
Best of luck for tomorrow, I am keeping everything crossed for you and I hope it goes well.
All the best.
Thanks everyone. It was good to get this appointment over with this week. It sort of feels like a great weight has been lifted from our shoulders just now and we can get back to getting on with stuff again. I think lately I have been worrying too much about the future and maybe need to focus more on the present. We dont know for certain what lies ahead but we will deal with what may lie ahead if and when it happens.
I hope we can get the caravan sorted out soon so that will be one less thing to worry about. Like Kris points out, if my parents can treat it as a holiday rather than just somewhere to stay temporarily whilst building work is carried out then it will be a good break from their day to day life. They havent had a holiday in years so that will be good for them and its my dads 65th in July so hopefully they will be away for that. He wants to go up in a hot air balloon and there is no way in the world mum will go with him so I will go with him. Dads Macmillan nurse has some local caravan park details so she is bringing them round tomorrow when she comes to visit.
Jan, my dad only had the one treatment and that was back in August. If I remember correctly at the time, we were told it would only be done once. That is good to hear that your husband has had it twice and also that you spoke to someone who has had it 11 times. This is something that I will be discussing with dads specialist at the next meeting as it may be an option for further treatment for my dad if required. From what I have read, PDT is still quite experimental as a treatment for CC so it’s good to hear that others outside the UK are having it and more than just one time. As your husband is having the PDT every 3 months, is/was he very sensitive to direct light and sunlight and for how long? Also if I may ask, how long did your husband have to wait to have the laser treatment once the Photofrin was injected? My dad had to wait 48 hours from injection to treatment. After the treatment, he was very sensitive to all types of light and had to cover his, skin, eyes and face by wearing a wide brimmed hat when he was outside for a few months. I hope this treatment is working for your husband and I will keep my fingers crossed for it’s success.
Marion, we never asked about the reason for the recent jaundice and darkened urine. To be honest, we were just so relieved to hear that it had gone, and that news, combined with dads doctors enthusiasm for his overall progress took my mind away from asking questions. What I am going to do before the next appointment is make a list of any questions we have so that we dont forget anything to ask him. I’m going to keep a list of things that may arise over the next 3 months so we are better prepared next time.
Tess, I keep saying to my mum that at least they are going to get a new kitchen and bathroom out of this when everything is all done, and they so do need a new kitchen! Their kitchen is tiny and full of badly fitting odd shaped units from the 1980’s! It’s a bit of a hard sell to them right now, but once they have a caravan sorted out and get away then it will be easier to deal with, especially if it’s sunny!
Many thanks once again to everyone for their kind words and support. My best wishes to you all.
Hmm, bbq, fresh air and a few racks of ribs followed by a days fishing. Now that sounds like a good plan to me! Hope you have a great weekend and catch a few fish!
All the best.
Thanks for keeping us up to date on what is happening. I can relate to how your feeling right now as I went through a similar situation earlier this year. We too were hoping that my dads tumour would have shrunk with the treatment but it had not. Like Lucille’s larger tumour, it hadn’t grown or spread, but it had not shrunk as we had hoped for, just as you and Lucille hoped for also. It’s not easy to take in news that is disapointing is it. What I tried to do was take the positives form the situation, that it had not grown or spread.
Hopefully like Marion says, maybe over the next few days once the news has sunk in Lucille will change her mind on further treatment. That is good news indeed that the smaller tumour has gone, and perhaps Lucille will in time think that this treatment worked on the smaller tumour so perhaps it is worth trying again on the larger one?
It’s not easy being a carer for someone we love is it. Day in day out having to deal with this horrific illness, the highs and lows and also the impact it has on us as carers. I’ve been caring for my mum for over 5 years and since this monster reared its head, my dad since last summer so I know what you mean when you talk about how things can take their toll on you. You have absolutely nothing what so ever to feel ashamed about.
My very best wishes go to you both.
And thank you Marion for posting that caregivers bill of rights, I’d never read that before.
Just wanted to wish you and Lucille all the best for tomorrow. I know what your going through with the waiting around and how worrying it gets, we’ve got an app for Tuesday next week with the specialist. I will keep you both in my thoughts and prayers.
It’s good to hear from you again. I’m glad that found everyone’s advice helpful. Everyone here is really friendly and helpful so please dont be afriad to ask any questions. I guess the only stupid question is the one that isnt asked!
Considering everything that is happening, my mum and dads mood is sort of mixed I guess. The building work was due to start this week but has been delayed due to further damage appearing in the ouitside wall in their block of flats which will affect the work needed to be done in their flat. They will probably have to move out of their flat into a hotel while the work is carried out due to the kitchen and bathroom having to be totally ripped out and replaced. The walls will alos need to be dried out with de-humidifiers for a few days even before it can be replastered. They will not be able to cope with all the dust due to their illnesses so need to move out. They cant come to mine to stay as I live 3 floors up and they cant manage the stairs. All in all, this is turning into a complete nightmare! But all we can do right now is get on with it.
Dads mood is pretty good. Yesterday I took him up to day care at the local Macmillan centre, he now goes there every Tuesday for the day and he loves it! He gets tea and toast as soon as he gets there and a 3 course dinner so he’s pleased! It sort of like a group where cancer patients go for the day for activities and to meet others in the same situation. They can get all sorts of stuff like reflexology, reikie sessions, arts and crafts and games, yesterday they were all playing scrabble and dad got another reflexology session, he loves that. It is staffed with specialist nurses and volunteers and is very informal. He also got a blood test done and they will be in touch if need be today.
Has your mum been offered the services of a Macmillan nurse yet? My dad was offered one when he was in hospital for the second time last year and she has been a god send to my parents. She comes to visit us when ever we want at home and is extremely helpful in so many ways, not only for medical matters but for other situations that might arise over time.
Thanks for the link you gave on the microwave treatment, it looks really interesting and hopefull for those who undertake it. Radiation treatment was ruled out along with surgery for my dad due to the location of his tumour, so PDT was offered.
As to the PDT, my dad never asked how long it would extent his life for. I dont think he really wanted to ask that question but I can understand why you want to know that. My dads attitude was that his specialist recommend the treatment so he wanted to go for it straight away. You say it sounds like a tough therapy to endure, but I guess when I compare what my dad went through to what I read here from people who have had chemo, it doesnt sound so bad. The biggest fright my dad got was when he saw the size of the syringe that the Photofrin was in. Not only that, but there was 2 of them! He said he thought about jumping out of the window to escape when he saw them! But they were injected through the valve type thing he already had in the back of his hand so he said it was painless. This was done 48 hours before he underwent the laser treatment so that the Photofrin could spread through the body. Although the Photofrin spread throughout his whole body, most of it was to amass in the cancerous cells which were then zapped as it were with the laser. The laser procedure was done in the same way in which the stent was inserteted and was under some type of anaesthetic. My Dad was deemed suitable for this treatment as the laser was able to directly attack the tumour and would therefore not cause any other damage to the surrounding area. The procedure itself was painless and dad could not remember a thing.
The biggest side affect of the treatment was that his skin was extremely light sensitive for a few months afterwards. The rest of his time in the hospital was spent in his room with the blinds drawn and the lights off. It sounds bad when I put it like that, but it really wasnt as bad as it sounds. he had to stay away from direct sunlight at first hence the blinds being drawn and the lights kept off. When he came out his room for a shower, all the lights in the ward had to be switched off and the large blinds on the main windows also had to be drawn. Once he left the hospital, he had to keep pretty much all his skin covered when he went outside, really dark sunglasses, a wide brimmed hat and gloves. This went on for a while and eventually he could go out without the gloves, then the gloves and hat and eventually with no gloves, hat or glasses. Again, it probably sounds worse reading it than what it really is. He only found it a bit of a hassle remembering to cover up, but he got used to it. as I said before, anything specific you can think of to ask regarding this then ask away.
Tess and Lainy have, as always, given you some great advice and support. All I know about chemo is what I have read on this site from people who have and are undertaking it. I really hope your mum can get referred to a specialist this week so that you can investigate further treatment of some sort. I would imagine the results of your mums scans and stuff should be stored electronically so should be able to be transfered over the NHS intranet to whoever needs to see them quickly.
As to the calcium in your mums blood. If you use the search function on this site then you can see if others have experienced this and posted anything about it. Does your mum still have the itching with the jaundice?
As far as you and your mum wanting to get back into her garden, that is not a ridiculous thought at all. I agree with Tess, hope is never ridiculous. My mum and dad also enjoy sitting outside relaxing and enjoying the simple things in life when they can. I hope you can keep us up to date with all that is happening.
I wish you all the very best.
Welcome to the site, although I am sorry that you have to be here. I’m glad that my post has been of some help to you during this stressful time. I know how you feel as I was feeling the same as you are now with my dad last year. In the space of a few weeks, my dad had been refered to the hospital because of the jaundice to being told he had inoperable CC. If you have any questions at all then please, ask away! Everyone will be more than happy to help if they can. This site has been great for me, so much information and support and has been a great help to me.
I dont know anything about the microwave ablation treatment you mention so thanks to Tess for the link and info on that. Im sorry to hear that from your last post you say that this treatment has been ruled out now. I hope you manage to get your mum seen by a specialist as soon as possible. Has your mum had the stent put in yet? My dad felt a lot better once he had his put in, he has a metal one. He suffered really badly from the jaundice, bad itching, yellow eyes etc and like Tess’s dad, once the stent started working he felt so much better. Im sure that once the docs get your mums jaundice sorted then she will feel a lot better.
As to the PDT treatment, ask away if you have any questions and I will help if I can. Have your mums doctors talked with you about types of treatment? Like a lot of other people, my dads CC was too advanced once it was noticed for surgery to be an option. The only symptoms that my dad seemed to be showing was the jaundice and the affects of that. I sure do wish that there were other symptoms that would have shown up at an earlier stage so that surgery might have been an option.
I can relate to how you and your dad are feeling right now having to deal with all of this. It seems like so much to have to deal with in one go and it isn’t easy. But it sounds to me as if you are doing a great job supporting your mum and dad in this fight.
I hope you will stay on the site, ask questions and keep us all up to date on what is happening. Like Tess said, starting a new thread may be a good idea also. Stay positive and I look forward to hearing more from you.
Wishing you and your family all the very best.
Just goes to show what an amazing person Jeff was, always thinking of other people. He was always there for everyone; helping, supporting and inspiring us all. Jeff will never ever be forgotten.
My dad also went through a period of having a metal taste in his mouth. However, this only lasted for a short while and he never had any type of chemo treatment, he had PDT. He hasn’t had that taste for some time now and when he did experience it, he said that it wasn’t constantly there and that it would come and go.
Best wishes to you and your husband.
That’s great news! I’m sure your dad will enjoy these pancakes when he is able to eat again. It’s great to hear a good news story and I hope he has a speedy recovery!
Best wishes to you and your family.
Hi Swarty, welcome to the site. My dad is also fighting this illness and was diagnosed last August. Sorry you have to be here. I’m afraid I cant help you with the hiccups, my dad never went through that. If you use the search forum function then you will probably find others who have experienced this and what did or didn’t work for them.
Wishing you all the best.
Hi L.B. Welcome to the site, although I’m sorry that you have to be here. I know that you will get loads of support from everyone here and I’m certain that you will get the answers to any questions you will have.
Wishing you all the best.