gavin
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Hi Elmoks,
Im sorry to hear about your mums condition right now, I know how difficult this is. I’m hoping that her doctors can get to the cause of the pain and give her something to ease this.
As to the metal stent my dad has, It was inserted through his right hand side, between his ribs. He was given a sedative before the procedure and it was done under anaesthetic. I forget if it was a local or a general. The procedure itself did not take too long and he experienced some pain when he came round from the anaesthetic, for which he was given a small dose of morphine.
He also had the drain in his right hand side to allow the bile to be collected. Once the stent was in, the bile started to flow into the bag and the bag was emptied every so often so that it could be measured. I forget exactly how long he had the drain bag, but I think it was for a few days at least. He said he didnt have much pain here, but was always aware that it was connected to him, especially when he had to get up and walk about etc. Even once the bile was draining, he still had his jaundice, dark skin and yellow eyes and did so for quite a while after. He did notice quite quickly I think that his itching had started to stop.
Maybe this link will also go some way to explaining the procedure –
http://www.cancerhelp.org.uk/trials/understanding/default.asp?page=8046
As I said, he still has the same stent in place and it has not clogged or been cleaned. My dad gets pain in his side every so often for which he takes codeine for. As to whether this is down to the stent or not we do not know. Once he had the stent put in, he would not sleep on his right hand side as he would get a jolt of pain if he did, and still today he does not sleep on his right side.
My dad also gets some trouble with gas, but no pain as a result of that. Hopefully the new stent will work for your mum and also that her pain can be brought under control.
I hope some of that helps.
My best wishes to you and your mum.
Gavin
Julia,
Great news indeed for you all. Like Marion and Darla, everything crossed here also.
Best wishes
Gavin
Hi Elmoks,
My dad has a metal stent and has had it since last summer when he was diagnosed. His CC was deemed inoperable from diagnosis so I guess that is why he was given the metal stent and not a plastic one. He has had the same stent since last year and it has not been changed or cleaned out. It was inserted through his rib cage in the procedure you describe, and he also had the billiary drain to drain his bile to relieve his jaundice. If I recall correctly, once the drain bag was removed, he still had the tube in place in case it was further needed, for a few weeks I think.
Hope some of that is useful and if I can help anymore then please just ask.
My best wishes to you and your mum.
Gavin
Hi Julia,
Thats good to hear that your mum is being helped by your updates on the site, any help at all we can get in this fight is good. I agree with Marion that a blog is a good idea and I’m looking forward to reading it! I’ve never done one either, maybe I should. I know at the Maggies Centre at Ninewells here in Dundee they encourage people to write about their experiences and even do a course in expressive writting.
The waiting sure can be a pain in the butt. Waiting to see doctors, waiting for tests, waiting for results. It’s something that we’ve all been through and have to deal with and I’m sure you will get used to it. Your feelings of anger and frustration are also something we can all relate to. I know I’ve felt like that many times myself! Especially last year when my dad was just diagnosed. Hopefully your sisters consultant will have some more information for you all as soon as possible.
My dads doing okay just now, although he has been really tired this week and spent quite a bit of time in his bed. Today should be a good day as its Friday and I’m just away to take him to his day care group at the Macmillan centre. They all have such a good laugh there, and they get well fed so he is happy! He was also at his horse riding on Wednesday and I managed to borrow a camcorder so was able to film him riding! He loved that and the film came out well, so all in all, a pretty decent week!
My best wishes to you and your family.
Gavin
Hi April,
Welcome to the site, although I am sorry that you have to be here. As everyone else has said, this is indeed a great site where you will get loads of support, knowledge and sharing of experiences. I hope that will get as much from being here as I have.
My dad was diagnosed last year and his CC was deemed to be inoperable, so no surgery or radiation. He underwent PDT as his treatment and a year on, he is still fighting this as best he can. Like all here, he has good days and bad days but his sense of humour and a positive outlook definitely help.
My best wishes to you and your mum.
Gavin
Hi Julia,
Sounds like you and your sister had a good 24 hours together! You’re also sounding a lot more positive and hopefull, which is good to hear. I’m also glad that your sister has met her consultant and that you all feel a bit calmer now. It would have been very re-assuring for you all to hear that this is what he and his team specialise in.
I hope the meeting goes well today and I will be keeping everything crossed for the best possible outcome.
Best wishes.
Gavin
Hi Julia,
I’m glad to hear that you are feeling a bit better and calmer this morning. It feels good knowing that you are not alone in this fight anymore doesn’t it. I know it’s tough to take all this new information in at first, but I believe that the more you know the better you will be at dealing with everything and also helping your sister and the rest of your family. Maybe thats not the case for everyone, but personally, I like to know as much as I can as it makes it easier talking with dads doctors and also talking with my mum and dad after docs apps etc. My dad forgets a lot of things so I need to be there to remind him of who said what etc regarding his treatment and care.
When you say your sister was transferred to Kings, I assume you mean Kings College London? This place –
http://www.kch.nhs.uk/services/liver/hepatopancreatobiliary-surgery/
If so, it seems like she is in pretty good hands there. Hopefully someone else will be along soon that was/knows someone who has been treated there.
I am keeping my fingers crossed for you that this is not inoperable and that surgery will be an option for your “big sister”. I hope you will both enjoy your 24 hours of tv, gossip and chatter! My dad spent the best part of 7 weeks in the hospital last year, 3 of which were spent in a room on his own after he had his PDT and he said he would have went crazy were it not for the tv he had in his room!
Best of luck to you all and I too hope you enjoy your weekend.
Gavin
Hi Lalupes,
Welcome to the site, although I am sorry that you have to be here. I know what you are going through right now as we have all been there. I know that like me, you will receive tons of support from everyone here and this site and the people here have helped me out a lot.
My dad was diagnosed last year with CC and we were also told it was inoperable. Radiation treatment was also ruled out from the start. I sure remember what that felt like. When we were told all of this, my mum and I were also called into the hospital and the 3 of us were told at the same time by one of the doctors on the specialists team. Once the initial shock wore off, our attitude was ok, that’s what we can’t do so what can we do. I agree with whats been said about hope, attitude and fighting spirit and believe that a positive attitude is a good attitude!
Where in the UK has your sister been diagnosed if you don’t mind me asking? My dad was diagnosed and treated at Ninewells in Dundee. His treatment was photodynamic therapy, PDT. If you want some more info on this then please just ask away or look for some of my posts on it. If I can help in any way I am more than happy to do so.
I know what you mean about the Data Protection Act and the docs not telling the family much. However, I understand that if you sister asks the docs anything then they are obliged to answer her. I know that my dads docs would answer my questions if my dad was there at the time. Also, when my dad was in hospital, his medical records were brought out everyday and were at the foot of his bed each day so they could be updated when required. It also meant that he and us had access to them each day. Is this not the case for your sister?
Here’s the link to the Christie Foundation Marion mentions in her post –
http://www.christie.nhs.uk/home.aspx
I hope you will keep coming back here and keep us all up to date with what is happening.
I wish you all the very best of luck.
Gavin
Hi Wendy,
Good to hear from you. I’m glad to hear that your mum is feeling a bit better now and is able to do a bit more. I remember before that you were asking about my dad’s experience with his PDT treatment. Did you talk with your mum and her doctors about the possibility of PDT being an option for your mum?
I agree that quality of life is an important factor and this was something that my dads doctors talked about with us before he started his treatment. Can’t help with anything realted to mistletoe therapy as I’ve never heard of it before.
I hope it all goes well and I wish you and your mum the very best.
Gavin
Hello Elizabeth,
Welcome to the site, although I am sorry that you have to be here. As Darla said to you, this is a great place for help, support and indeed everything else.
From what you have said about your mums diagnosis, it sounds quite similar to my dad’s. He was diagnosed last year and we were told his CC was inoperable due to the location of the tumour and that radiation treatment would also not be an option. His doctor was also not keen on going for chemo. My dad had a stent inserted which helped relieve the jaundice followed by photodynamic therapy, PDT a few weeks later. If you use the search function and type in my name or PDT, you can look for some of my posts that go into a bit more detail about my dads treatment to date.
Perhaps talking to your mums specialist about this type of treatment may be an option for your mum. I also agree with Darla re getting other opinions as soon as you can regarding everything to do with all of this. My dad was diagnosed and treated at Ninewells in Dundee.
I’m sure others will be along soon with more support and information, but if you have any questions then just ask away.
I wish you all the very best.
Gavin
Great idea for a thread Marion.
My dad was diagnosed and treated with photodynamic therapy by:
Mr Iain Tait
Ninewells Hospital
Dundee
Scotlandhttp://www.dundee.ac.uk/surgery/onestaff2.php?ID=60
http://www.nhstayside.scot.nhs.uk/patients/hospital/ninewells.shtml
Hope that helps.
Gavin
Hi Marion,
It’s always great to hear from you too. I hope you and Pauline managed to enjoy Barcelona, I hear that it’s a lovely city, and no doubt the weather was lovely also. The last month has been really hectic so I’m glad to get it over with to be honest. We couldn’t get a caravan for them but managed to get a room in a nice guest house not too far from here. Bit of a nightmare only having a small room, but it was all we could get on such short notice once they got the start date for the renovations. The owner of the guest house is reallly nice though and has treated them really well. And the building work is now finished so they get home tomorrow once the house is all cleaned. Ive been going down to see them about 3 or 4 times a day and taking them out and stuff so they can get out of the room a bit and also taking them out for their meals at night. At least the weather here has been scorching the last few weeks so that has been a bonus.
Dad now goes to day care twice a week and he is still loving it. Friday it is all men so the humour there is different compared to Tuesdays which is mixed, they seem to like his lousy jokes! The doctor there has been really happy with his blood test results recently so that is good news. In all the time dad has been away, he has only had one lousy day which he just slept through. He has had no re-appearance of any jaundice and only the occasional twinge in his side where the stent is, his urine is also normal colour. Day care is working out great as it is very informal and relaxed and I can speak to the doctor and specialist nurses every time we go and talk about anything at all. Dads appetite has shown no signs at all of reducing and he is certainly enjoying his full cooked breakfasts every day at the guest house! I definitely could not eat the amount that he is eating every morning, he is eating like a horse! So all in all, I’m really pleased with how he is doing right now. It’s his 65th on the 12th so that is something to look forward to.
Mum saw her COPD nurse 2 weeks ago and her lung and breathing tests have all improved which is good. She still cant walk too far, but that has also improved over this year. She is underweight though and her nurse wants her to put on weight so she is on Skandia shakes every day for the next month. One positive to come out of having to move out for 3 weeks is that mum was forced to go out every day for an evening meal as they dont do that at the guest house. So we hired a wheel chair for the month so she could get out and she is now loving being out a lot more than the last few years. When they go home, we are going to buy her her own wheel chair so that she gets out more. It will just be a small fold up one that I can keep in the boot of my car. Getting out a lot has done wonders for her moods so it’s something I want her to keep doing.
I will be glad when they get home and things can get back to some level of normality again. They tried to treat this time as a holiday and have enjoyed lots of it, but this week it has been getting to be a bit of a drag for them. Living in the one room, it felt as if they were living on top of one another a bit, so they are looking forward to getting home tomorrow. Now we just need to sort out what is going into their new kitchen.
Sorry for hi-jacking your thread and rambling on!
Best wishes and a safe flight home.
Gavin
Marion,
Massive thank you to you and Pauline for all your efforts here, they are greatly appreciated by us all. It sounds like you both had a very successful conference and spoke with so many people to help spread the word. What a team the pair of you make!
Once again, many many thanks to you both.
My best wishes to you both and to everyone else as well.
Gavin
Hi Walk,
I’m sorry to hear that your dad is going through a tough time just now. My dad doesn’t suffer from dementia, but he gets tired real easy now and also gets very forgetful these days. Yesterday for example, my dad went back to bed in the morning, afternoon and then again in the evening. This doesnt happen every day though, but most days he will go back to bed at least once. He gets forgetful a lot when he is talking about things and trying to remember events from the past, who he’s spoke to and what they said etc. The only pain meds my dad takes right now are codeine based and he only takes them when needed so I dont think they they are the cause of this.
I hope you manage to get this checked out.
Best wishes
Gavin