Hello everyone – I’m new here

Hi there,

My name is Gavin and I’m new here so I thought I would introduce myself. I live in Dundee in Scotland and I am the carer for my Dad. He was diagnosed in August this year with CC. The specialist says it is inoperable due to the fact that it is located close to too many major blood vessels and that any attempt to try to remove it would prove fatal for my Dad.

I hope you won’t mind me sharing his story with you all. Back in July, my Dad went to see the nurse at his local medical centre in Dundee to get his ears cleaned out, he has hairy ears and every so often has wax building up in his ears which the nurse does what she does to clean them out. This time, she noticed that his eyes were slightly yellowish and advised him to make an appointment to see his GP, which he did. He saw the GP who then referred him to the hospital for further tests. So my Dad waits for his expected hospital, which does not arrive. In the meantime, my Dad’s eyes get even more yellow and his skin starts to get a yellowish/brownish colour. As well as this, he is now itching really really badly so he goes back to see his GP. His GP prescribes tablets to try and help with the itching and tries to get my Dad into hospital ASAP. So this goes on for another few days and then the GP phones and says get readdy to go into hospital very very soon. This call came on the Friday evening and the GP thought my Dad would be admitted on the following Monday. Well Monday and Tuesday come and go and still no call comes from the hospital. On the Wednesday morning, my Dad was out at the shop getting a paper and he takes a dizzy spell. Fortunately, the shop was beside the medical centre and my Dad goes into the centre. He was then rushed in to see his GP who took one look at my Dad and then told him that he was definitely going to hospital that very day. The GP said to my Dad that he was “away to get on the phone and start shouting at people at the hospital”, which he did and I took my Dad to hospital an hour later.

My Dad was admitted to Ninewells hospital in Dundee where he then spent the next 3 and a half weeks undergoing all sorts of tests, scans, x-rays and a CT scan. At first, we were not really told anything as to what exactly they were looking for, but my Dad’s jaundice was really bad now. As soon as we were told about the CT scan, my Mum and I started to fear the worst. Rightly or wrongly, that was the emotions and thoughts that we experienced then. The Doc’s said that it might be gall stones which were the problem, or it might be this, or it might be that or it could be something else.No one was giving us any definite information, probably because they couldn’t say for any certainty. I understood that, as hard as it was at the time, I would have hated to be told that my Dad had something very serious but which turned out to be a lesser illness. My Mum always felt that it was soemthing more serious than gall stones though.

After a few weeks in the hospital, one morning my Dad phones and says that the Doc wants to speak to my Mum and I that day. Immediately alarm bells are ringing with my Mum and she thinks the worst. So we both go up to the hospital. The 3 of us then meet with the Doc, one of the junior Docs to the specialist who then tells us that he is 99% certain that my Dad has CC and that it is inoperable. Before this meeting, I feared the worst, but when we were told the actual diagnosis it still felt like a hammer blow to the head. I will never forget looking at my Dad that moment, he had a saline soultion drip in him on one of these tall stands on wheels so he could move with it, he looked stunned, shakey and very scared. Who could blame him?

My Dad stayed in hospital for another 10 days or so during which time they did more tests, an endoscope and other tests and a metal stent was inserted into his side to relieve the jaundice. He also had a billary drain in his side to drain fluid from his bile duct. The next stage of his treatment was to be Photo Dynamic Therapy (PDT), but this would not be until most of the jaundice had cleared.

My Dad was then discharged, but still had the tube is his side so that the PDT treatment could later be performed. As it turned out, we were back at the hospital the next week to see the specialist to see about his further treatment. Looking back at this, this was a day I will never forget. My Dad was quite weak physically at this point. I picked my Mum and my Dad up in the car and we drove to the hospital. Ninewells hospital is a very large hospital complex, one of the biggest in Europe. My Mum has COPD, so what I had to do when the 2 of us were visiting my Dad in the hospital was I had to drop my Mum at the front of the hospital, then go park the car, come back to the front of the hospital and find a wheelchair then we could go to the ward. The ward where my Dad was was about half a mile or so from the front of the hospital. Anyway, the day of visiting the specialist, I dropped my Mum and my Dad at the front of the hospital, then parked the car, then came back and found a wheelchair. I took my Mum down to the ward where the specialist was based, then came back and took my Dad down to the specialist.

We all saw the specialist then who confirmmed what we knew, that it was CC and that it is inoperable. My Dad was doing his best to fight the tears and was looking very shakey. No surprise really considering what he had been told, but I’d never seen my Dad look scared like that before. We were then told about the PDT treatment which my Dad was all up for, as he said “whatever it takes, whatever it takes.” There was a specialist nurse in the Docs office with us then who wanted to take blood from my Dad. She told us that she would wheel my Dad inot the ward to take blood and that my Mum and I should come too. My Mum then struggled to get up and walk out after the nurse and my Dad, I had to help her. The nurse looked back and saw this and saw my Mum struggling. She then asked me who I had brought down in the one wheelchair and I said both of them, one after the other. She looked pretty stunned. That is one moment in my life that I will never forget. I got used to, well as used to as you can possibly get having one of your parents ill and caring for them, then being told that another has this horrible disease and what that will involve for all of us.

3 days later, my Dad was back in hospital for the PDT treatment. He had Photofrin injected into him on the Tuesday then spent the next 3 weeks in a room with the blinds closed and the lights off for the next 3 weeks. The Photofrin was to spread into the most affected cancerous cells in his body. The downside was that it would also spread in lesser doses to all the cells in his body. On the Thursday he had the laser treatment that was to attack the cancerous cells in the bile duct. The laser treatment went throught the tube that he stiil had in the side of his body. He said that the treatment was painless, how he knows this is beyond me, as he was given an annaesthetic type drug that did not completely knock him out, but took him to a state where he did not know what was happening! As the Doc said to us after it, the patient would not feel anything and not know what was happening but would not be unconscious.

Dad spent pretty much the next 3 weeks in his room in the hospital with the blinds closed and the lights off. Storng direct light or sunlight on any part of the skin would make his skin burn like you would with sunburn. This effect could last for anything up to 8 weeks. He could not even go out of his room into the general ward to speak to other patients. When he did leave the room to have a shower, all the lights in the ward were turned off and the blinds on the main windows had to be closed. After a while, he was able toleave the room, but when he did, he had to wear a pair of gloves, be fully clothed, wear a wide brimmed hat and the darkest pair of glasses that you could imagine. His Michael Jackson outfit as he calls it! He does have a great sense of humour!

Well after 3 weeks. my Dad was discharged. The specialist said the PDT treatment had went as well as it could have possibly went. It won’t totally clear up or kill the cancer, but hopefully it will slow it down as much as possible. my Dad still has to wear his Michael Jackson gear on when he goes outside everyday. All he can manage just now though is to go to the local shop to get a paper, then comes home and is knackered. But he is grateful just to get out, and we are grateful just to have him here. This Sunday he has another test, he has to go outside in all his gear but on one of his hands, he has to wear a paper bag instead of a glove. He has to cut a small hole in the bag to expose his skin to the light andsee if there is any reaction. If that small part of the skin burns then he has to fully cover up again, if it does not burn then he can go out without the gloves. If he can go 2 weeks without the gloves, then 2 weeks later he can take his hat off, then if that is okay then he can take the glassess off. He has to take it a small step at a time and try this bit by bit. I know that the future is uncertain, but we will deal with this together and take each day as it comes. My Dad will go back to the hospital soon for another CT scan to see how everything is or is not, and we will deal with that when it happens. Today, I am just happy to have my Dad home and see my parents together. If something happens tomorrow, we will deal with it then, today, we are all just happy for today.

I’ve just looked back at this post and realised how long it is. Many thanks to all of you who have taken the time to get this far and I apologise for the length of this! My thanks also to those who provide this wonderful site and to those who post here. I’ve just recently found this site and joined it and have found it a great inspiration to me. I don’t know if my and my Dad’s story will help you, but it hleped me a lot to write about it.

Love to you all

Gavin