November 11, 2008 at 10:19 pm #1681gavinModerator
I thought I would do an update on my Dad just to let you know how he his doing as I haven’t had much time lately to spend on the site. By the way Jeff, many thanks for your email, it meant a lot to me.
For those of you who don’t know, my Dad’s CC was inoperable so he underwent a treatment of Photo Dynamic Therapy in Ninewells in Dundee. He was released from hospital about 3 weeks after the laser treatment but had to wear gloves, sunglasses and a hat when outdoors due to his skin being extremely light sensitive due to the Photofrin drug used in the the treatment. Well, now he has been able to go outdoors without the gloves, glasses and the hat for a few weeks. This is a big thing for my Dad as he was starting to get a bit self conscious when outdoors dressed up as he had to be. It took a few weeks longer than expected for the effects of the Photofrin to wear off and this was getting my Dad down a bit, although he wouldn’t admit it.
Dad was having serious sleeping problems when he came home, he could sleep during the day but not at night. His Macmillan nurse was round to see him every week and she thought Diazepam might help so he was on this for a week or so, but it did not help with sleeping. By this point Dad was pretty desperate to get some sleep at night so she suggested trying a sleeping tablet, Zopiclone and some relaxtion cd’s to help him relax during the evening. Well the relaxation cd’s certainly helped him during the day! The day after he got them I went round to the house to find him lying flat out on his back on the living room floor fast asleep with them playing on the stereo! Now, he is going to bed at night without taking the Zopiclone and if he sleeps then great, if he can’t then he takes one after a while. He did have a fall one night after starting to take the Zopiclone. He took one for about the third night or so since starting them with the intention of going straight to bed, then the football came on the tv so he decided to stay up and watch it for an hour. Mum had gone to bed so he was up on his own watching the tv. When the football finished he stood up from his chair and fell down, then struggled to bed and fell again before getting to bed. This has only happened once which makes me feel that it might have been the effects of the Zopiclone kicking in whilst he was watching the tv then standing up. After that incident, he started taking the tablet then going to bed immediately!
As far as pain goes, he was told to take paracetamol, 2 tablets 4 times a day which he did for about 2 weeks or so. Then he developed a pain in his stomach area. His Macmillan nurse then changed that to codeine tablets which he now takes 2 tablets 3 times a day and they seemed to work and still do. He was also for a while getting a pain in his back very infrequently, but that now has gone. Dad was getting bouts of shaking when he was recently out of hospital, I started a thread on this. Well he hasn’t had any shakes for about a month or so which is good. He spoke to his GP about this but he didn’t know what caused it.
Dad’s mood has greatly improved recently now that he can go out as normal and that he is sleeping so much better. His sense of humour is still good and his appetite is back with a vengeance, he can eat for Scotland again! He still gets very tired and this can come on very quickly, which when it does, he goes to bed for a nap. But, my Mum thinks that a lot of the time he is making the effort just when me or other people are around him. At first I didn’t think this was the case as he was making great progress from when he first came home from the hospital. But now I see where Mum is coming from. Sometimes, dad just sits there and stares at the tv and seems disinterested in general and doesn’t talk much. Mum says that a lot of the time when i’m not there he doesn’t really talk much to her. He’s not being rude or anything, but just seems a bit vacant sometimes. He also doesn’t really like talking about his illness and when you do, I can see his mood change pretty quickly. He doesn’t get angry or anything, he just seems to well up and not talk about it.
Last week he got his appointment for his CT scan at Ninewells, it’s on the 23rd of December. We’re not really too happy about the delay in this as he was told it would be about 6 weeks or so after he had the PDT treatment. He had the treatment quite a while ago and he should have had this scan a lot quicker than what it is scheduled for. Something that is really worrying Mum and I about getting this scan is this; Dad mentioned to my Mum that he was looking forward to getting the scan to see how the treatment has worked. Ok, fair enough, we all want to know. Then he said something to Mum about how this scan would hopefully show that the PDT had cured him. Mum told me about this instantly as she had no clue as to how to deal with that, and to be honest, neither do I. Dad said to mum that a doctor at the hospital told him that the treatment would cure it. The 3 of us sat there twice, once with one doctor who initially told us about CC and that his was inoperable and about PDT and the other time with Mr Tait, the specialist who told my Dad twice that his was inoperable and what the PDT would hopefully do for him, ie slow the progression down. Myslef and my mum understood at the time what this meant and we both felt that Dad did also. However, it appears this is not the case now. Mum and I both don’t know how to handle this or what to say. What I think has happened is that when the Doc told him about getting the stent inserted, he was told that this would help sort the jaundice and the itching and make him feel better. Maybe Dad picked up on this and thought it was the cure for everything and not just the jaundice. Anyway, I guess this is something that we willhave to deal with once he had had his CT scan.
I know all of this is also affecting my Mums health, she has COPD and her health has taken quite a few steps backwards. I took her to the Docs on Saturday for her flu jab and this was the first time she had been out of the house since the day before my Dad got out of the hospital, a few months ago. She did 12 weeks of physiotherapy for her breathing and walking and was making immense progress. Following on from this, she had the option to go to a local gym where once a week thay have classes for COPD patients. Mum was really up for this and was all set to go, then Dad got sick so she got stressed and worried and missed the weekly classes when we were going to the hospital every day. Now, I think she has lost her confidence and maybe her will to go each week. Her next class is tomorrow, but I don’t expect she will go. I know this concerns my Dad also, Mum worries about Dad and talks to me about him and Dad worries about Mum and talks to me about her.
Anyway, thanks for reading this and apologies for the length of my post!
The best to you all.
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