Search Results for 'gavin pdt'
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Search Results
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In reply to: Update on my Dad
Hello everyone,
Well the gp and Macmillan nurse came round yesterday to see Dad. It turned out to be a lot different day than we we were all expecting. The gp had spoke to the specialist on Monday and said that the 2 of them had had a long discussion regarding my Dad.
First off all, it seems that Dad doesn’t need to go to the hospital right now but if things get worse over the next few weeks then this will change. The gp told us that this is based on the results from the last blood tests. He asked dad about any pain he was getting and just now, the only pains really are twinges in his side where the stent is. As it is right now, Dads appointment to see the specialist still stands for the 26th May.
Then the talk moved on to the future and the gp started asking Dad if he had thought much about what may lie ahead. They talked about the PDT, how it had gone, what everyone had hoped for etc. Naturally, we had all hoped the tumor would have shrunk, but it hadn’t. Then I asked about possible chemo treatment as being the next stage of treatment. Well it turns out that the gp and the specialist had discussed this on the phone and from what the gp told us, the specialist seems to be of the impression that chemo at this stage wont help my Dad.
Dad didnt seem to take this in at the time and kept saying that he was willing to undergo any type of chemo or any other treatment if it would help. At this point, the tears were welling up in his eyes and he was finding it hard to talk.Well, we all talked some more about lots of stuff and now Dad seems to realise and accept that chemo may not be an option for him. It seems to me as if the gp was sort of preparing him for his meeting with the specialist in May.
So, as to what happens next I have no idea really. Guess we will just have to wait and see. Dad was referred to the local Macmillan centre to go for couselling and to meet others in the same boat as him. I think this will do him good to talk to others he seems to be up for this. His Macmillan nurse also thinks this will be good for him too and she will be coming back to see him next week. She also had a talk with my mum and will be dropping in to see us all every week now. Dads gp is new to the practice and this is only the second time he has seen dad. His last gp retired a while ago. The new gp is really nice and Dad really liked him. He is young and spent a load of time with us all yesterday and we all got the impression that nothing would be too much trouble for him. Plus, he seems like a real people person and very easy to talk to which again, Dad liked.
So yesterday turned out to be quite a different day than what we were expecting really. And to top it off, it the whole kitchen needs to be ripped out and replaced and some of the walls in the bathroom are saturated with water and need to be replastered along with the ceiling.
Not a good day really.
Hi Danielle,
Sorry to hear that your husband has had problems with his stents, I hope you are managing to get some help with them. As to my dads sweats, he seems to get them every 4 or 5 days or so and in general on those days, feels pretty rough for most of the day and stays in bed. Then the next day he seems to be fine again. Hopefully we will find out in May if the stent needs to be changed or not. Thanks for your kind words and I wish you and your husband my best wishes.
Well, many thanks to you once again for listening to me.
Best wishes to you all.
Gavin
In reply to: Update on my Dad
Hi everyone,
Many thanks for your thoughts and best wishes and for replying to my post. I realised yesterday after I had posted just how much I have missed by not coming to the site as much during the last few months. It really does help to talk to others, especially those who are in the same boat as myself.
Well the gp did not come yesterday. We waited for 2 hours for him to turn up then ended up phoning the surgery to be told that the appointment was booked for Tuesday and not Monday. This was not what we were told on Friday. Then the gp himself phoned after that apologising for not turning up saying that dads Macmillan nurse was not available on Monday. Dads Macmillan nurse is very reliable and comes to see him when ever Dad needs her, so it sounds as if the gp had not confirmed with the nurse that they would both be coming round on Monday. Anyway, not too chuffed about that but not much we can do about it so they are coming round today.
The water situation is getting worse and a surveyor is coming today to assess the damage. It’s not looking good, the bathroom and the kitchen will probably need to be re-plastered at the very least so more stress and hassle all round which we could do without. The flat where the water is coming from is rented so trying to track down the owner and deal with him has not exactly been fun. Dad gets flustered on the phone dealing with this sort of stuff, so I’ve been handling it all.
Lainy, I agree that the darkening urine and the re-appeaance of the jaundice should not be ignored. This is why I pushed Dad to see the emergenvy doctor that Saturday night. I did at the time suspect that the stent may have become clogged and needed to be checked. It’s thanks to you, Marion and others warning me for what to look for as signs that the stent may be getting blocked, so many thanks to you all for that advice!
I also agree that the specialist not getting in touch to discuss the CT results is not acceptable. I told Dads Macmillan nurse my thoughts on this and she agreed and I will be mentioning this to the specialist the nect time we see him. Dad has an appt to see him on the 26th May, but the gp tried to get this brought forward and if Dad has to go into the hospital this week then he will see him there. It is good that the tumour has not grown and we were happy about that. As to another go at the PDT, we were told that it can only be done once so we will have to wait and see what treatment if any is next.
Tess, good to hear from you to. It is indeed tough battling illness and hopefully the better weather will mean that mum and dad can at least get to sit outside for a while. It’s not much, but at least it gets them out of the house, if even only for a short while and it breaks up the monotony of each day.
I agree that taking some time for myself is needed and I do try and do that. I’ve been caring for my mum, my mum and my grandad before he died and now my mum and my dad for over 5 years and sometimes it does feel like its catching up on me. But I wouldnt stop doing it for anything.
I wish you and your family all the best.
Marion, good to hear from you too. Yep the leaking water has just topped off a bad few weeks but hopefully the surveyor will get the ball rollling with the repairs etc. And hopefully the weather here this summer will be good, but this is Scotland so im not counting on it too much! We were hoping to get away for a small break this summer in July for my dads 65th birthday. It would only be to a small holiday park on the coast just south of Edinburgh with everything on the site so not much walking would be needed. But a break away from home would do my parents the world of good.
I told the emergency gp, dads gp and the Macmillan nurse my concerns over the stent possibly being blocked and they all agreed that that may be the cause of the jaundice re-appearing. I sort of think that dad being admitted to hospital this week will be the best thing for him right now. Hopefully if he does go in then it wont be for anywhere near as long as the 7 weeks that he was in for last year.
Many good wishes coming back your way also.
Sophie, many thanks for your very kind words, although I dont know about being my parents hero or anything. Maybe I’ll ask my mum that the next time she’s yelling at me! Her lungs may be badly affected with her COPD, but she sure can shout at me when she wants to!
All the best to you and your family.
Thanks to you all for your words and support. I will keep you up to date and let you know what happens today.
The best to everyone.
Gavin
Topic: Update on my Dad
Hello everyone,
It’s been a while since I’ve posted so i thought I would do an update on my Dad. I’m sorry for not posting in so long, but the last few months have been pretty hard for the 3 of us and I really havent felt up to posting or spending much time on the internet. The combination of my parents illnesses, winter and pretty much being permanently stuck in their flat has taken it’s toll on them. Lots of arguements, stress and in general, not a lot of happy thoughts. And to top that off, water has been leaking into their kitchen and bathroom from the flat above all weekend which hasn’t helped stress levels!
We got my Dad’s CT results in February. He still hasn’t seen his specialist yet to talk over them and was told what they showed briefly from a local GP over the phone. They said that the PDT had stopped the tumour from growing in size since he was diagnosed last year, but it had not shrunk it either. Obviously we were hoping that it would have shrunk, but happy nonetheless that it hasn’t grown any either.
Over the last month or so, Dads jaundice has been slowly coming back. It’s nowhere near as bad as it was last year, but concerning that it’s coming back. Also during the last month, he was getting the odd day of sweating really badly and in general feeling pretty lousy and his urine had darkened. These days have been getting more frequent over the last 2 weeks. He saw an emergency GP 3 weeks ago on a Saturday night who talked to the hospital and they didnt think an emergency admission was needed. Since then, he has saw his own GP and Macmillan nurse at home a few times and they are both coming round to see him again today. Dads GP spoke to the specialist on Friday and if he thinks Dad need to go into hospital then he will probably have to go in today.
My apologies once again for not posting much. Even though I haven’t been around here much over the last few months, you have all still been in my thoughts and prayers every day.
Gavin
In reply to: My Dad has cc
Hello Heartbroken,
Welcome to the site. Like Darla says, I am glad that you found the site, although I am sorry that you have to be here. First of all, many thanks for sharing and I am sure that you will find the same support and encouragement that I have found from the people here. This really is an excellent site and the people here have given me great comfort and support.
Like you, I am in the UK, I live in Dundee and my dad was diagnosed with inoperable CC last summer. Because of the location of the tumour, there was no hope of any surgery at all. Like you, we had never heard of bile duct cancer and went through the same emotions as you have gone through and thought, how can this be, how can my Dad be so unlucky. He is only 64 and his general health is good. Also like you, my Mum isn’t that well either, in fact her general health is not good, she has COPD and I am their carer. I do all the chores, shopping, cooking etc and am there for them all the time.
As far as my Dads treatment went, he had a metal stent inserted and still has to this day. He was jaundiced pretty badly, itching really badly and the stent helped with that. Since no curative treatment was possible, he was offered Photo Dynamic Therapy and the hope here is that this and the stent combined will help slow down the progression of the tumour. I know this wont cure him, we were told this a few times by his docs, but slowing it’s progression down seems to me like the next best thing. I dont know if your dads docs talked to you about it’s treatment, it seems far more common in the UK than in the US, this was the first thing my Dad was offered.
I agree with what Jan says about getting a second opinion. Also, does your Dad have a Macmillian nurse? My Dad was asked about this and he said he would like the Macmillan nurse to come see him when he got home from the hospital, he was there for the best part of 7 weeks. She is great and comes to see him when he needed it, first it was every week once a week or more if he wanted. She was able to talk to him about everything in a different way than a doctor could, and in his home and in a relaxed manner. She was also able to get new prescriptions sorted out oretty quickly if needed, as my Dad did for some pain meds that needed to be upped. Another service my Dad had to use a few times was the district nurses, do you have the phone number at hand for them for the 24 hour service?
Like you, Im not sure what the next step will be or what the future holds. My dad had his first CT scan lask week since undergoing the PDT therapy a few months ago and now we are just waiting for the results.
Don’t give up hope and don’t stop fighting. If there is anything that you want to ask me, then please do so.
I wish you and your Mum and Dad the very best and I will keep all of you in my thoughts and prayers.
Gavin
In reply to: Inquisitive son…..
Hi Rob,
Welcome to the site. I can’t comment on any of the chemo drugs or treatments as my Dad has not undergone any of them. I am my Dad’s carer, he was diagnosed last year with inoperable CC so no surgery was possible. The first course of treatment he was offered was PDT therapy which he underwent late last summer. He also had a metal stent inserted and still does have that. If there is anything at all that I can help you with regarding this treatmemnt and how it went for my Dad then please just ask me.
I wish you all the very best.
Gavin
Topic: Dad has CT scan tomorrow
Hi Everyone,
Thought I would do a quick update and let you all know what is happening. Well my Dad has his CT scan tomorrow. Originally it was scheduled to be at the end of March which would have been around the 6 month mark since he underwent his PDT treatment. This was due to take place at Ninewells in Dundee where he was treated and where we live, Dundee that is. Now he is to get his scan at the hospital in Perth, which is about 20 miles or so from here.
They are doing some work on upgrading the scanners at Ninewells in the coming months so it seems as if a space is available for him to be scanned at another hosipital which is perhaps not as busy as Ninewells is. This has all came about a lot quicker than expected, but I am glad that he is getting this scan. I know my parents are anxious about this, as I am, but I really want to know how the treatment has gone and what happens next.
I am staying strong and being positive and doing everything I can for my Mum and Dad. Dad still has some bad days, but the good days are still outweighing the bad ones. His sleeping is a bit hit and miss sometimes, but his mood overall is good, and he is still eating for Scotland which I take as a good sign!
I will let you all know how it all turns out.
The very best to you all.
Cheers
Gavin
In reply to: Update on my Dad
Hi Everyone,
Many thanks for all your kind words and support. Well Dad still has a cold, it’s not too bad now, just coughing sneezing etc but he is like a bear with a sore head when he gets a cold and is pretty gumpy with it. He’s always like that when he gets the cold, maybe thats a male thing!! I’m glad he doesn’t get them too much, but he is on the mend so that is good. Mum has been in bed since the 24th with a virus and has only really been up to go to the toilet. She is also a bit better but her mood is really low. It seems like that when one of them gets low and is in a bad mood, they drag the other down in a sort of spiral. Im hoping that once they get a bit better physically and we get into the new year that they will both perk up a bit. Anyway, dad got the date today for his CT scan, its the 24th of March. Quite a while away but hopefully then we will know how the PDT has worked and what/if happens next.
Hi Vincent,
Here’s hoping 2009 will be better for you and your family and indeed for everyone. I hope you managed to get your mum a good doctor and some good treatment for her. I wish you all the best.
Hi Marion,
I hope you had a good Christmas and I wish you all the best for the new year. I hope it brings you everything that you want. Hugs coming back across the pond your way!
Hi Jeff,
Good to hear from you. Thats good to hear that you and your family had a good Christmas. Christmas should be about spending time with the family so it brings a smile to my face to hear that you enjoyed yours with your family. Thats one of the things I liked most about Christmas, spending time with the family. I hope you will enjoy the visit of your brothers in January.
Hope is indeed always in the air. I like your talk of proving them all wrong, I like that thought very much.I hope you are right re the seasonal depression state. Mum and Dad dont really like the cold, short days etc. This year it really has seemed to affect their moods for the worse. Being stuck in the flat 24/7 is not good for them, especially mum. Hopefully by March the worst of the cold weather will have gone and spring will bring the new highs of emotion you talk of. I am doing my best to be strong for them both and taking care of myself also as you say. I will email you this week if thats ok with you?
Hi Darla,
I hope the new year will bring better things for you also. The cold dark weather here really badly affects my mums breathing. So even if she wants to go out, it makes it so hard for her and it really takes it out of her. Dad has to wrap up really well in this weather, so I got him some nice hats and gloves for Christmas!
It sounds like we can both do with the warmer, lighter days and nights of the spring. Hopefully this will indeed lift your spirits and help ease the pain some. I told mum and dad that as soon as it gets warmer, I am taking them to Anstruther, a tiny fishing village on the east coast of Scotland, about 30 miles or so from here where there is a chippy that sells the best fish and chips in Scotland! I think a lot of small day trips here and there will do them the world of good after spending the winter indooors.
Hi Kris,
My dads specialist was indeed happy with his progress so far, and if he is happy then I am happy! I really like my dads doctor and feel that dad is in the best possible hands. Dads doctor is the big chief as it were at Ninewells and was also involved in the very early stages of trials of PDT in the UK. He is also a very nice guy and spends lots of time with patients and the families.
All the best once again for your MRI scan and hopefully the new year will bring you and Hans some good fortune. Enjoy the fireworks!
Hi Tonia,
Thanks for your kind words. Up until now, I’d never really understood how the darkness and weather can affect people as it does. But after reading yours and others posts and seeing how it has hit my parents, I can see that now. Roll on the spring!
I am indeed hanging in there and hope you are doing the same.
Many thanks once again to you all and I wish all of you the very best.
Big hugs to you all!
Cheers
Gavin
In reply to: newly diagnosed with cc
Hi Vincent,
Good to hear from you. Sounds to me as if you are being very pro active in trying to get your mum some good treatment. It’s good to see that you have a positive action plan and are trying to get specialists to see your mum. Keep it up!
Yep chemo was an option for my dad, and still is. He gets a CT scan on the 23rd to see how things are. We were told that chemo would be an option at any time as treatment, but if he had the chemo first, then he could not have the PDT treatment. The specialist recommended the PDT and the stent first, then if neccesary chemo. Dad agreed with this as he wanted to try all possible treatments so jumping straight into chemo would have ruled out PDT. I will keep you up to date on how the treatment is going and hope you will keep us up to date with what is happening to your mum.
The best to you and your mum.
Gavin
In reply to: symptoms after one year of curative surgery
Hi Marisha,
Welcome to the site and I’m sorry to hear about your dad. My dad was diagnosed with inoperable CC this summer and was not deemed suitable for surgery, too risky as the tumor was too near to major blood vessels. His first symptom was the yellowing of the eyes, which then got worse then itching, which progressed from annoying to unbearable. Dad saw his GP about this jaundice and was prescribed Piriton whilst he was waiting to be admitted to hospital.
Once admitted, CC was diagnosed and the first part of his treatment was to have a metal stent inserted. This we were told was to unblock the bile duct and allow the bile to flow which would relieve the itching and the yellow eyes. Some of my dads skin was also yellowing at this point. Anyway, he was then treated with PDT treatment and allowed home after a few weeks. Once home, he had no itching or yellowness at all, but sometimes he would get these really bad bouts of shaking. He had the first one in the hospital, but the doc’s did not know why it happened and it stopped after about 30 minutes or so. These bouts of shaking happen still to my dad, but on each and every time they happen, he has never had a fever or a temperature. His GP has told him that it just one of these things no one seems to know why it happens, but it just does.
I agree with what Marion and Lainey have said to you about the possibilty of his stent being blocked and that he should see a doctor as soon as possible. I am also not a doctor, I am only telling you what people here have told me and what my dad’s doc’s have told us and what my dad’s experiences were.
Cheers
Gavin
Topic: Update on my Dad
Hi everyone,
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.
Cheers
Gavin
In reply to: Just found this board
Hi Jan,
Welcome to the site. I’m new here as well, I only joined last week and have had the most amazing support from everyone here. I’m sorry to hear about your dad. My dad was recently diagnosed with non-operable CC and has undergone PDT therapy. I can relate to what you say about being mentally drained, both my mum and I feel like this. My dad spent nearly a month in hospital, came out for 10 days then went in for another 3 weeks.
This is such a tough situation for everyone affected by this horrific disease to deal with. I wish you and your dad all the very best.
Gavin
I wish you
In reply to: Just wanted to introduce myself…….
Hi Cherbourg,
Welcome to the site. I only joined last week and I have found the site and the people here an amazing source of support, advice and friendship. I hope you find the same. My dad was recently diagnosed with non-operable CC and underwent PDT treatment. Being able to come here and share my experiences has been a great source of comfort.
Wishing you and your mum all the very best.
Gavin
Hi all,
Thanks again for all of your support, it really does mean so very much to me to hear from you all!
Marion,
Many many many thanks to you for suggesting that I look into using the search function on the site. I was searching the site last night for posts relating to PDT and came across a post from early 2006. The thread was regarding PDT in the Uk and someone posted that there were only 2 trials for this in the UK, one by a surgeon in London and the other by a Mr Tait at Ninewells Hospital in Dundee. My Dad was treated at Ninewells and his specialist is Mr Tait! The treament Mr Tait and his team gave my dad was superb, he was always there for us and was more than happy to spend lots of time with us all. I always felt that my dad was in good hands with his specialist and after reading that Mr Tait was one of only 2 surgeons carrying out PDT trials in the UK, I feel that dad really is in the best possible hands. I told my mum and dad today about this, and they were both very very happy to hear this. They also both felt very happy and comfortable with being treated by Mr Tait, but now that they know that he was carrying out trials and research, they feel even better about the care my dad is getting.
Thank you very much Marion and huge hugs to you!
Jeff,
Thanks again for thinking out aloud again re the parkinsons and how his meds may have progressed it if he does have it. I know nothing about parkinsons or the symptoms but I think I will have to look into this further. I’m a bit wary of mentioning this to my dad right now as I’m sure you can imagine, he has a lot of other things to deal with right now. His GP did say to him previously that he did not think parkinsons was an issue then, but as you say, his meds may have progressed it.
This not sleeping at night is really hitting my dad badly. He is used to a very regular 8 hours a night every night when he was working. He never worked shifts like I did so his body clock was very regular, unlike mine as I worked all manner of different shifts week in week out. He’s only ever had 1 job and worked for 48 years for the same company doing the same job 8 to 5 every day every week. I think you might be right regarding the change in habits, excercise and metabolism brought about by this horrendous illness.
Rank,
Thanks for your support. I can totally relate to what you feel when you see your dad shake. It’s never nice to see a loved one like this and like your dad, my dad is a very proud man. I will do anything and everything in my power to help my dad and make his life as easy and as comfortable as possible. Sometimes though, I try to take a step back and let dad try certain things as I do not always want to just jump in and ask if he needs help with that. He is a proud man and I repect that so much.
He had an incident in the hospital when he had to sign his name to a form for something. He really couldn’t do it and his arm was shaking really badly and this made him a bit panicky. The harder he tried, the harder it became to sign his name. I told him to stop as I could see how agitated he was becoming, but he carried on. Sometimes he really is a stubborn old goat! We made a joke about it afterwards and he was okay. I’ve mentioned in previous posts that dad has a great sense of humour and I think this helps him deal with certain situations.
I’m glad that the reikye situation gave you a much needed chuckle, it did the same to my mum and I also! I sure hope that your dad gets some sleep soon. Have you tried a few drops of lavender oil on his pillow? Our Macmillan nurse suggested this to my dad and I got some for him this week.
Many many thanks to you all and the best of wishes to you and your families.
Gavin
Hi Lisa,
Thanks for your kind words and your post. I’d never heard that of PDT, but I had read that the treatment was now being expanded and used in some other cases for other kinds of cancers and treatments as well. I will keep everyone updated as to how it goes for him.
Hi Jeff,
Thanks for your post. My Dad was given temazepam in the hospital to help him sleep, but that did not work. He was given Diazepam by his GP last week, but that does not seem to be working at night either. His Macmillian nurse said that they could look at stronger tablets, but my Dad wanted to give the Diazepam a try for a few weeks or so to see if that worked. We are getting him some relaxation cd’s to listen to in his bed to see if that will help, but maybe the reikye massage tomorrow may help him relax. It just seems a bit weird the he can sleep during the day and evening, but not when he should, at night. It seems like he has turned night into day and vice versa.
As to his shaking, it seems like a continuous sort of shivering shakiness, but he does not complain of being cold at all. It is not a jerky type movement and when it happens, it does happen continuously and does not just come and go. Then when it does happen again, it does not happen for a number of days. He also does not complain of feeling weak when it does happen.
I’m not too sure what you mean by blood work exactly, but Dad had blood taken pretty much every day in the hospital and the Docs were very happy with what they saw in the results in the time after the PDT was started. Dad has always had a shaky right arm for about the last 5 years and like you mention, Parkinsons was something we had thought of. However, he spoke to his GP about it and was given tablets to try and help and they did. The way that used to look was that you would never know he had this, then he would pick up a drink of juice and you could see his hand shake as he took a drink. It wouldn’t stop him doing certain things such as eating and drinking, but you could see it when he did them. Now he is unable to write or sign his name like he used to do. I’d never thought of how the photofrin might be reacting with his nervous system as you point out so many thanks for thinking out aloud as you did! Maybe it’s a combination of all the drugs he has to take just now, he has to take 7 different types each day right now.
Many thanks to you both for your posts.
Best to you both.
Gavin
Hi everyone,
My dad came out of hospital a few weeks ago after being treated for CC with PDT treatment. The treatment went well and he has now been home for a few weeks. A week or so after the initial laser treatment of the cells, he suffered a bout of shaking lasting not very long but enough for it to concern him. One of the Doc’s at the hospital didn’t think it was anything too serious and felt it might have something to do with the liver. This did not happen again during my Dad’s time in the hospital and so nothing else was done to look further into the matter. All the tests my Dad underwent were showing excellent progress after the initial laser treatment.
Since coming home, my Dad has experinced this same, short bout of shaking lasting about 15 minutes. This does not overly concern my Dad, but when my Mum and I see it it does worry us since we do not really know why it happens. I wonder if it has anything to do with tiredness? My Dad is not sleeping at night since coming home, despite being prescribed Diazapam last week. He can sleep for about 3 hours very easily in the afternoon and again in the evening, but can not at night. Tomorrow, someone from the Maggie’s centre at Ninewells hospital is coming to see Dad for his first session of reiyke massage to try and relax him so hopefully that will have some benefit for him.
Dad did not sleep at all last night or this afternoon as he had a visitor and after he had his evening meal, he had another bout of shaking before going to his bed for a nap this evening. This makes me think that maybe this has something to do with being really tired. My Dad has always been a very deep, heavy sleeper with no problems at all in getting to sleep and this not sleeping regularly over the last few months had really hit him badly. He barely slept at all in the hospital. Has anyone experienced this or has any idea why it may happen?
As far as the PDT treatment recovery is going, on Sunday he went outside with the glasses, his hat and a glove on one hand and a paper bag with a hole in it on the other hand. The hole allowed a small part of his skin to be exposed to direct light for 15 minutes whils the rest of his body was covered. Well after 24 hours, that part of the skin turned red like sunburn so it tells us that he is still very sensitive to direct light and that the Photofrin is still active in all his cells. It doesnt look like very bad sunburn, but none the less, his skin still reacted to the light so he has to be fully covered up for another 2 weeks before trying the test again. The specialist warned us that this may happen after this test and that everyone reacts differently to the PDT treatment recovery so it is not really a major worry. My Dad is not downhearted about this but I think he was looking forward to going out without his gloves on.
Many thanks for taking the time to read this far and any experiences or suggestions will be very much appreciated.
Best wishes to you all.
Gavin
