Time for an overdue update, I think. I have felt tired the passed few days and have spent most of the days dozing on and off during the day. I am certainly getting good at dropping off to sleep for short naps. The last few nights have been good as well. I have had very little coughing and on the occassions that I have started coughing the medication has helped to bring it back under control.
I would like to take this opportunity at thanking everyone who has left a comment. It is wonderful to think that anyone is interested enough to read my blog, the phrases "watching paint dry" or "clothes drying in a tumble dryer" spring to mind. It was my wife's idea as she kept saying it would be a way of keeping people up to date as to how I had been feeling.
The pain control medication has been increased today. It is a morphine derivative and as such the body gradually gets used to the level of it prescribed, so that the amount taken has to be increased just to keep the pain control the same.
To those who siphoned off the petrol from our car last night - I hope you choke on it ! Unfortunately the tank was pretty full.
This evening being Shrove Tuesday I am sitting here eating pancakes. The mixture was made by my mother-in-law and cooked by my father-in-law. They are delicious. They have certainly made it into a lovely evening.
I must say thanks to Tony & Claire for their generous offer over the DVD's. I must say, though, that I haven't finished looking through the extensive list yet.
Mark, what a lovely blast from the passed. What are you up to these days ? I hope all is well.
I must admit there have been times when I have asked "why me ?". I have always felt that it is a dangerous road to go down (and pointless really). It is not something that anyone can answer but rather requires a blind acceptance that there is an intelligence working. Ah faith. The ability to say that I don't know why this is happening but I accept/believe that there is a good reason for it and one that I will never know.
The silly thing is that one develops an image in one's mind as to how one is going to die. I always thought that I would stay fairly slim and mobile but just become more and more sleepy until I was spending most of my time asleep until I peacefully passed away. Ah the naivety of it. Cold hard reality is something very different. I now need walking sticks and a wheelchair to get around. The skin on my lower right leg las become damaged and now leaks lymphatic fluid like a teabag lets the tea through. It is currently being bandaged four times a day, i.e. every six hours, but could do with being bandaged every three hours by which time the dressings are soaking wet. The pain control continually needs to be tweaked. I can no longer sleep in a bed as I wake up coughing and spluttering, so I sleep in a recliner chair instead.
Ah Richard, how are things ? Hope all is well with the family. You must let me know how things have been going. Carlos has my email address if you fancy the idea.
Anyway, time to go for another night. Take care everyone, it certainly helps me to think that there are people out there who care enough to read my blog.
Tuesday, 5 February 2008
Sunday, 3 February 2008
Sunday 3rd February
I should have said that it was my father-in-law's birthday yesterday. It has been a month of birthdays. Just keeping it to relations it has been my mother-in-law's birthday followed by my mother's birthday the next day, then my father's birthday just over a week later, then my birthday a week after that and finally my father-in-law's birthday. Definately an expensive month, but they are funto celebrate.
It is strange, really, you go around now saying to yourself, "well that is the last time I will be celebrating that". I find I cannot help it. Christmas came and went and you think, "well that is probably my last Christmas". The same was true for my birthday. It may not be true but you cannot help it. Is it a very pessimistic view to take ? I don't think so. I don't feel overly sad/depressed about it, I just feel that I must do what I can to enjoy it as much as possible.
On to last night and today. It was a bit of a disturbed night but not too bad, I was able to get a few hours sleep. Still quite tired and dozey today, though. I tried to watch a film, but had to spend most of the time rewinding it because I had dropped off and missed some/all of the remainder of it.
Unfortunately the District Nurses came very early at about 8:30 P.M. tonight. They usually come between 11:00 P.M. and midnight. It will leave a long gap until it is changed again. We will have to see if anything can be done to alleviate the situation.
A short post tonight as I am still tired, time to go now, so good night all.
It is strange, really, you go around now saying to yourself, "well that is the last time I will be celebrating that". I find I cannot help it. Christmas came and went and you think, "well that is probably my last Christmas". The same was true for my birthday. It may not be true but you cannot help it. Is it a very pessimistic view to take ? I don't think so. I don't feel overly sad/depressed about it, I just feel that I must do what I can to enjoy it as much as possible.
On to last night and today. It was a bit of a disturbed night but not too bad, I was able to get a few hours sleep. Still quite tired and dozey today, though. I tried to watch a film, but had to spend most of the time rewinding it because I had dropped off and missed some/all of the remainder of it.
Unfortunately the District Nurses came very early at about 8:30 P.M. tonight. They usually come between 11:00 P.M. and midnight. It will leave a long gap until it is changed again. We will have to see if anything can be done to alleviate the situation.
A short post tonight as I am still tired, time to go now, so good night all.
Saturday, 2 February 2008
Saturday 2nd February
Yeh, hah a decent nights sleep at last. Forget talking about the weather, sleep is far more interesting and important (for me anyway). It is amazing what a difference a decent nights sleep makes. I had a Marie Curie nurse last night. I cannot praise them highly enough.
I touched on the help from friends in my last blog. Some friends have been coming into help with housework, others have helped by taking the children to and from school, doing shopping for us or by helping with the redressing of the bandages on my leg. Some have driven to our local airport to drop off or pick up friends/relations for us, or to just to do one off jobs to help us. In this day of self centered consumerism I cannot emphasise how amazed I feel at everyone's generosity.
I have added a photograph of myself to the blog site. I hope it does not scare anyone away. I have also opened up the posting of comments so that anonymous posts can be made.
It feels strange to think that so many people might be interested in my blog (by many I mean more than just me). I started it as a way to relieve frustration and keep our friends informed as to how I was feeling on a daily basis. I hope it succeeds in this.
Jazz please, my wife wants to know what all the ROAMING was about now. Seriously, though, thanks for all your help and continuing support, be in touch later.
Time for my dinner now, right in the middle of the England v Wales match. I got to see the Ireland v Italy match earlier. Great result for Ireland, well done they deserved it.
Bye for now.
I touched on the help from friends in my last blog. Some friends have been coming into help with housework, others have helped by taking the children to and from school, doing shopping for us or by helping with the redressing of the bandages on my leg. Some have driven to our local airport to drop off or pick up friends/relations for us, or to just to do one off jobs to help us. In this day of self centered consumerism I cannot emphasise how amazed I feel at everyone's generosity.
I have added a photograph of myself to the blog site. I hope it does not scare anyone away. I have also opened up the posting of comments so that anonymous posts can be made.
It feels strange to think that so many people might be interested in my blog (by many I mean more than just me). I started it as a way to relieve frustration and keep our friends informed as to how I was feeling on a daily basis. I hope it succeeds in this.
Jazz please, my wife wants to know what all the ROAMING was about now. Seriously, though, thanks for all your help and continuing support, be in touch later.
Time for my dinner now, right in the middle of the England v Wales match. I got to see the Ireland v Italy match earlier. Great result for Ireland, well done they deserved it.
Bye for now.
Friday, 1 February 2008
Friday 1st February
A bit of a gap I am afraid. The last couple of nights have not been good. The night before last was exceptionally bad. I got very little sleep with the coughing. It is terrible to go through as you cannot stop coughing. I was coughing again last night but I managed to get a little bit of sleep as well, thankfully. After you have been coughing for a while the chest tightens up and becomes irritated, making you want to cough all the more. I now have a couple of options with medication to try and relieve the situation. Hopefully they will help in the future. As I have had hardly any sleep at night I have been dozing off and on for most of the past couple of days. Hence, no blog.
The main aim now is to try and provide overnight cover. Again, nobody guarantees to provide cover night after night. Last night it was provided by St. Francis Hospice, tonight it is being provided by Marie Curie, tomorrow will not be Marie Curie but it is too early to know if St. Francis Hospice will be able to provide overnight cover.
For the past couple of nights a friend of ours who has trained as a paramedic, in the past, and works in that field has come in at 5:30 A.M. in the morning to redress the bandages on my right leg. There are a group of friends who have volunteered to come in at that time to redress the bandages on my right leg, now. I am constantly amazed at the generosity of our friends.
Enough for tonight, I am afraid that I am tired again, so see you all soon.
The main aim now is to try and provide overnight cover. Again, nobody guarantees to provide cover night after night. Last night it was provided by St. Francis Hospice, tonight it is being provided by Marie Curie, tomorrow will not be Marie Curie but it is too early to know if St. Francis Hospice will be able to provide overnight cover.
For the past couple of nights a friend of ours who has trained as a paramedic, in the past, and works in that field has come in at 5:30 A.M. in the morning to redress the bandages on my right leg. There are a group of friends who have volunteered to come in at that time to redress the bandages on my right leg, now. I am constantly amazed at the generosity of our friends.
Enough for tonight, I am afraid that I am tired again, so see you all soon.
Tuesday, 29 January 2008
Tuesday 29th January 2008
Happy birthday to me ! Yes, another birthday has come round. To be honest I wasn't sure whether I would see this one.
First the problem with my legs. The District Nurses came out at about 4:00 P.M. this evening to change my dressings. They have said that the homecare help should be able to change the bandage during the night if it needs it. Last night a couple of District Nurses came round at about 9:00 P.M. to change the dressings on my leg. They were, as always, soaking wet when they were changed. This morning the District Nurses came round to dress my leg but there were none of the usual dressings left. They had to, rather imaginatively, improvise by using incontinance pads in place of dressings when bandaging it. A prescription had been put into their local chemist for more dressings and they had expected him to have delivered them to our house, already. They said it should be on his van ready to be delivered, but if not then they would pick it up from him before they came. Shortly after they left the chemist dropped off a box of dressings. The only thing in the box were the crepe style bandage used for wrapping round the dressings. Unfortunately I did not take too well to this. I thought that the District Nurses would get in contact with the chemist and be told that the bandages/dressings had all been delivered only to turn up and find nothing here, resulting in the use of more incontinance pads and a leg wet again a couple of hours after being dressed. My wife tried to get in touch with the District Nurses to inform them of the situation. She was told by the receptionist at the clinic that she could only leave a message in the book which the District Nurses should read when they came back from their home visits. When or indeed if they would actually read the message she could not say. My wife gave up trying to be put through to the District Nurses on the phone and handed the phone over to a home help nurse from St. Francis Hospice that was next to her and asked her to try. The nurse explained the situation again to the receptionist and asked to be put through to a District Nurse. This time, talking to the nurse, the receptionist said that my wife had not explained the situation properly (even though the nurse said exactly the same thing as my wife) and that she would put her through immediately to the District Nurses. The District Nurses said that they would investigate the situation with regard to the bandages/dressings. One of the District Nurses who bandaged my leg in the morning phoned back later to say not to panic, that she had said that they were going to pick up the bandages for me before they arrived in the evening. I pointed out that, that was not what was said exactly.
Anyway they arrived in the evening with a box of bandages for my leg. The other thing that the District Nurses have said is that the homecare help from St. Francis Hospice should be able to change my leg dressings during the night, if needed. The homecare help is not a guaranteed service. If there is someone available who can stay the night from 10:00 P.M. to 7:00 A.M. then they will come, if not then no-one will turn up. We do not find out until 4:00 P.M. in the evening if someone is available to stay overnight. It must be said that St. Francis Hospice have done what they can to try and provide someone. We also have Marie Curie nurses coming in during the night between 10:00 P.M. and 7:00 A.M. They can only come in, at most, three times a week. Again they cannot guarantee to come in but will try as much as possible to make the three nights. The night time service, while being vital for me, is not a guaranteed serivce I am afraid.
That leads me on to last night which was a very good night, in that I managed to sleep from about 1:30 A.M. to 6:30 A.M. I haven't slept that much for ages.
Finally to the day itself, my birthday. I have had a few people come in to wish me happy birthday and received several birthday cards. My parents also came round to wish me happy birthday. Overall it has been an enjoyable, if tiring day.
Enough for now, more rantings/ravings another day, goodnight then.
First the problem with my legs. The District Nurses came out at about 4:00 P.M. this evening to change my dressings. They have said that the homecare help should be able to change the bandage during the night if it needs it. Last night a couple of District Nurses came round at about 9:00 P.M. to change the dressings on my leg. They were, as always, soaking wet when they were changed. This morning the District Nurses came round to dress my leg but there were none of the usual dressings left. They had to, rather imaginatively, improvise by using incontinance pads in place of dressings when bandaging it. A prescription had been put into their local chemist for more dressings and they had expected him to have delivered them to our house, already. They said it should be on his van ready to be delivered, but if not then they would pick it up from him before they came. Shortly after they left the chemist dropped off a box of dressings. The only thing in the box were the crepe style bandage used for wrapping round the dressings. Unfortunately I did not take too well to this. I thought that the District Nurses would get in contact with the chemist and be told that the bandages/dressings had all been delivered only to turn up and find nothing here, resulting in the use of more incontinance pads and a leg wet again a couple of hours after being dressed. My wife tried to get in touch with the District Nurses to inform them of the situation. She was told by the receptionist at the clinic that she could only leave a message in the book which the District Nurses should read when they came back from their home visits. When or indeed if they would actually read the message she could not say. My wife gave up trying to be put through to the District Nurses on the phone and handed the phone over to a home help nurse from St. Francis Hospice that was next to her and asked her to try. The nurse explained the situation again to the receptionist and asked to be put through to a District Nurse. This time, talking to the nurse, the receptionist said that my wife had not explained the situation properly (even though the nurse said exactly the same thing as my wife) and that she would put her through immediately to the District Nurses. The District Nurses said that they would investigate the situation with regard to the bandages/dressings. One of the District Nurses who bandaged my leg in the morning phoned back later to say not to panic, that she had said that they were going to pick up the bandages for me before they arrived in the evening. I pointed out that, that was not what was said exactly.
Anyway they arrived in the evening with a box of bandages for my leg. The other thing that the District Nurses have said is that the homecare help from St. Francis Hospice should be able to change my leg dressings during the night, if needed. The homecare help is not a guaranteed service. If there is someone available who can stay the night from 10:00 P.M. to 7:00 A.M. then they will come, if not then no-one will turn up. We do not find out until 4:00 P.M. in the evening if someone is available to stay overnight. It must be said that St. Francis Hospice have done what they can to try and provide someone. We also have Marie Curie nurses coming in during the night between 10:00 P.M. and 7:00 A.M. They can only come in, at most, three times a week. Again they cannot guarantee to come in but will try as much as possible to make the three nights. The night time service, while being vital for me, is not a guaranteed serivce I am afraid.
That leads me on to last night which was a very good night, in that I managed to sleep from about 1:30 A.M. to 6:30 A.M. I haven't slept that much for ages.
Finally to the day itself, my birthday. I have had a few people come in to wish me happy birthday and received several birthday cards. My parents also came round to wish me happy birthday. Overall it has been an enjoyable, if tiring day.
Enough for now, more rantings/ravings another day, goodnight then.
Monday, 28 January 2008
Night of Sunday 27th January
Not a very good night I am afraid. My right leg has suddenly started to gush fluid. The result, saturated bandages, trousers and slippers. After 6 hours the clean bandages are saturated again. They are now being changed at 11:00 A.M. and 7:00 P.M. The only trouble is that they are dripping wet by 1:00 A.M. and there is no-one available to change them. The home help that we had last night phoned the District Nurses and asked if they would come out to change my bandages at 1:00 A.M. and was told that District Nurses do not come out at night to change bandages. Geraldine and the home help had a go at changing my bandages at 6:00 A.M. this morning to try and provide me with some relief. My next visit from the District Nurses is due at around 11:00 A.M. this morning.
So I got a couple of hours sleep, last night, which means that I am tired now. I fell asleep in my chair at about 2:00 A.M. and woke up coughing and spluttering at 4:00 A.M. It took a while to clear my lungs. I eventually fell asleep again at about 5:00 A.M. and woke up at about 6:00 A.M., so roll on another day and let us see what else have you got to throw at me that is new and unpleasant ?
So I got a couple of hours sleep, last night, which means that I am tired now. I fell asleep in my chair at about 2:00 A.M. and woke up coughing and spluttering at 4:00 A.M. It took a while to clear my lungs. I eventually fell asleep again at about 5:00 A.M. and woke up at about 6:00 A.M., so roll on another day and let us see what else have you got to throw at me that is new and unpleasant ?
Sunday, 27 January 2008
Sunday 27th January 2008
Whoops, forgot to say. Last night was a good night. I was able to sleep in my chair from about 2 A.M. to 7 A.M. (I can no longer sleep in a bed as my lungs fill up with mucous and I wake up coughing). This was a great nights sleep for me. Yesterday was a fairly interesting day. A close friend of mine came round to say hello and have a chat. Another family friend flew over from Ireland on friday to spend the weekend with us. She is very generous and kind hearted as she has her own husband and family back in Ireland and yet she still manages to find the time to come over.
Fortunately we are blest with the number of friends locally who are eager and willing to help us wherever and whenever they can. It has made a tremenous difference to us.
Time to go I think. The children are getting up and my carer should be along, at any minute, to wash me and get me dressed. I will then be ready for the district nurses to arrive and re-bandage my legs (which has to be done on a daily basis, I am afraid). And so onto another day .....
Fortunately we are blest with the number of friends locally who are eager and willing to help us wherever and whenever they can. It has made a tremenous difference to us.
Time to go I think. The children are getting up and my carer should be along, at any minute, to wash me and get me dressed. I will then be ready for the district nurses to arrive and re-bandage my legs (which has to be done on a daily basis, I am afraid). And so onto another day .....
Where to begin
My name is David.
Why have I set up this blog ?
Unfortunately I am terminally ill with a rare form of abdominal cancer called Pseudomyxoma Peritonei. The purpose of this blog is to provide some form of regularish update as to my condition, i.e. how I am feeling on a day to day basis. It will be updated as an when I feel up to it and have something to say.
How did it all start for me ? (A quick history)
I first noticed something was wrong and went to my doctor in about June 2005. After a variety of ever more invassive tests in hospital, I was eventually diagnosed to have PMP (Pseudomyxoma Peritonei) in August 2005.
I went to the North Hampshire hospital in Basingstoke in September 2005 for my MOAS (Mother Of All Surgeries) operation, as it is known by fellow sufferers and was there about a month. Unfortunately they were unable to remove all of the tumour tissue so it has been a waiting game since then to see how long I have.
After Basingstoke I was transferred to the care of The Royal Marsden Hospital in London where I have, until recently, been receiving care and treatment. I have undergone several different types of chemotherapy while at the Marsden, but to no avail. At most the chemotherapy would slow to a crawl the progress of the disease. It was never able to reduce the amount of the disease that I have.
Finally, last October 2007, the disease took off in a fairly vigorous fashion and the Marsden said that there was nothing more that they could do to help me. They also, when pressed, said that I probably only had a matter of weeks left to live. They then initiated the processes to transfer my care over to that of my local palliative care team and my local St. Francis Hospice.
So since last November I have been under their care and have decided to set up this blog to allow both myself and my wife to provide a reasonably current update to my condition for anyone who is interested to read.
Well there we are, my first ever blog post. It hasn't been as painful as I expected it would be. Much better than trying to extract teeth. Let's see if I can post this now.
Why have I set up this blog ?
Unfortunately I am terminally ill with a rare form of abdominal cancer called Pseudomyxoma Peritonei. The purpose of this blog is to provide some form of regularish update as to my condition, i.e. how I am feeling on a day to day basis. It will be updated as an when I feel up to it and have something to say.
How did it all start for me ? (A quick history)
I first noticed something was wrong and went to my doctor in about June 2005. After a variety of ever more invassive tests in hospital, I was eventually diagnosed to have PMP (Pseudomyxoma Peritonei) in August 2005.
I went to the North Hampshire hospital in Basingstoke in September 2005 for my MOAS (Mother Of All Surgeries) operation, as it is known by fellow sufferers and was there about a month. Unfortunately they were unable to remove all of the tumour tissue so it has been a waiting game since then to see how long I have.
After Basingstoke I was transferred to the care of The Royal Marsden Hospital in London where I have, until recently, been receiving care and treatment. I have undergone several different types of chemotherapy while at the Marsden, but to no avail. At most the chemotherapy would slow to a crawl the progress of the disease. It was never able to reduce the amount of the disease that I have.
Finally, last October 2007, the disease took off in a fairly vigorous fashion and the Marsden said that there was nothing more that they could do to help me. They also, when pressed, said that I probably only had a matter of weeks left to live. They then initiated the processes to transfer my care over to that of my local palliative care team and my local St. Francis Hospice.
So since last November I have been under their care and have decided to set up this blog to allow both myself and my wife to provide a reasonably current update to my condition for anyone who is interested to read.
Well there we are, my first ever blog post. It hasn't been as painful as I expected it would be. Much better than trying to extract teeth. Let's see if I can post this now.
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