Dad is 71 today. To be honest I wasn't sure he was going to make it this time last week.
Yay! Go Dad!!
Tuesday, May 30, 2006
Friday, May 26, 2006
MacMillan Nursing Donations.
I will be including links to the MacMillan Nursing folks here in the not to distant future. Please donate as much as you can to these amazing people.
ominous developments
Got a text from Mum this evening to say that Dad wasn't at all well and wasn't responding to stimuli. EEssentially he was asleep but not waking up. He responded to pain i.e. he went "ow!" but that was it. Dad had been fine this morning, he had had a good breakfast but didn't finish lunch and skipped his midday pills.
I got to the hospital at around 19h00 to find Dad in bed, protective sides up, a plasma substitute drip and a catheter in and him "asleep". Mum says she got there at three-ish as usual to find Dad asleep in his side-chair. She left him be but got concerned when he wouldn't wake up for her. She called the Nursing team over and they got him back into bed using the Patient Hoist. He didn't stir.
They took blood pressures and pulse etc and called for the Doctors. Blood pressure *very* low, hence the plasma drip - designed to increase blood pressure quickly and then followed it up with a saline drip.
When the Doctors came round they took Mum aside and said that it is not unusual for patients in this situation to have their heart just stop. He also said that they could resuscitate him but that it might cause further damage to Dad.
Mum then said one of bravest things I have ever heard her say - no. She said that they should not resuscitate him - let him go. It's what he would want. I totally and utterly agree. If he goes down hill from here then so be it. But no pain. No more pain. Let him be.
If there is any change overnight they will be in touch with Mum first but now they have my numbers to call if need be.
I got to the hospital at around 19h00 to find Dad in bed, protective sides up, a plasma substitute drip and a catheter in and him "asleep". Mum says she got there at three-ish as usual to find Dad asleep in his side-chair. She left him be but got concerned when he wouldn't wake up for her. She called the Nursing team over and they got him back into bed using the Patient Hoist. He didn't stir.
They took blood pressures and pulse etc and called for the Doctors. Blood pressure *very* low, hence the plasma drip - designed to increase blood pressure quickly and then followed it up with a saline drip.
When the Doctors came round they took Mum aside and said that it is not unusual for patients in this situation to have their heart just stop. He also said that they could resuscitate him but that it might cause further damage to Dad.
Mum then said one of bravest things I have ever heard her say - no. She said that they should not resuscitate him - let him go. It's what he would want. I totally and utterly agree. If he goes down hill from here then so be it. But no pain. No more pain. Let him be.
If there is any change overnight they will be in touch with Mum first but now they have my numbers to call if need be.
Monday, May 22, 2006
Sleepy...
Went to see Dad on Saturday. He was very sleepy. Seems like he is getting out of synch with day and night as he was asleep during the day and awake at night.
I'll try to go and see him during the week and see if I can get more sense out of him then.
Went over to see Mum on Sunday evening. Seems like she is doing okay but the constant travelling between hospital and home is wearing her down.
I'll try to go and see him during the week and see if I can get more sense out of him then.
Went over to see Mum on Sunday evening. Seems like she is doing okay but the constant travelling between hospital and home is wearing her down.
Friday, May 19, 2006
Something else to add to the list - cerebral atrophy
Mum went to the Case Conference about Dad yesterday. Turns out they have done CT scans of his back and his brain and they have now diagnosed Cerebral Atrophy - a shrinking of the brain - which explains some of his odd behaviour recently. He may also be harbouring/nursing an infection (the medical team thinks) so we have to wait and see.
They are talking about admitting him to a nursing home for 24/7 care as the cancer team has all but given up - he is too weak for more chemo (which is actually a blessing) and the medical team can't treat Cerebral Atrophy.
I can't help but thinking that this is evidence of Dad slipping away from us. I have no idea as to how long he has, it may be months, weeks or only days. The chemo will come back and get him anyway that much is certain. If his mind goes as well it will be worse for Mum to see him deteriorate mentally - that will hurt more.
Either way I don't want Dad to know about it - just go and be at peace...
We'll see...
Paul
They are talking about admitting him to a nursing home for 24/7 care as the cancer team has all but given up - he is too weak for more chemo (which is actually a blessing) and the medical team can't treat Cerebral Atrophy.
I can't help but thinking that this is evidence of Dad slipping away from us. I have no idea as to how long he has, it may be months, weeks or only days. The chemo will come back and get him anyway that much is certain. If his mind goes as well it will be worse for Mum to see him deteriorate mentally - that will hurt more.
Either way I don't want Dad to know about it - just go and be at peace...
We'll see...
Paul
Monday, May 15, 2006
In a room on his own
I went up to the Hospital on Saturday and saw the new room they have transferred Dad to. On the one hand it's a bight, airy, large room and he's on his own. On the other hand he's on his own. He hates being on his own.
Apparently the reason for the move was that they "needed his bed" - which is BS because they had the room he's in now! The truth is that he calls out a lot now - day and night - and it disrupts everyone else. It shows how far he has come because it wasn't *that* long ago that he was on a ward beig disrupted by someone else who was calling out all the time - and he was getting pissed off by it.
Dad was in reasonably fine form on Saturday. he was stuffing his face with sweets and fruit and sitting in the chair next to his bed. His mind was wandering a bit and it wasn't until he tried to get up that I saw how weak he really was. He has improved though at a general level - he has been moving with a Zimmer Frame but Saturday it was too much for him.
He had aCT scan during the week and it seems that the cancer has shrunk because of the chemo he's had. This confirms the conversation I had with the Doctor a few weeks ago - he thought it would do that and although this is good news it really only resets the clock. My guess is he has 6months. Maybe less.
The Doctors have been very clear from the start. The sort of cancer he has is treatable but not curable. Any remission he gets will be temporary - there is no cure. We just don't know when it will get him. As long as the pain (and he is in pain, all the time) is controlled and his quality of life isn't awful that's fine by me. The longer we have him the better.
There is a case conference on Thursday which I really want to go to but can't. My firm is exhibiting at a huge conference / exhibition on Thursday and Friday and I have to go to it. The double bummer is that the conference is just over the river from hospital - I suspect I will be able to see the hospital from the car park of the expo. Shit.
I know Mum will be disappointed but I just can't get the time off. I'm going to try but I just don't think it's going to be possible. We've been working towards this for months and I have to be there.
Apparently the reason for the move was that they "needed his bed" - which is BS because they had the room he's in now! The truth is that he calls out a lot now - day and night - and it disrupts everyone else. It shows how far he has come because it wasn't *that* long ago that he was on a ward beig disrupted by someone else who was calling out all the time - and he was getting pissed off by it.
Dad was in reasonably fine form on Saturday. he was stuffing his face with sweets and fruit and sitting in the chair next to his bed. His mind was wandering a bit and it wasn't until he tried to get up that I saw how weak he really was. He has improved though at a general level - he has been moving with a Zimmer Frame but Saturday it was too much for him.
He had aCT scan during the week and it seems that the cancer has shrunk because of the chemo he's had. This confirms the conversation I had with the Doctor a few weeks ago - he thought it would do that and although this is good news it really only resets the clock. My guess is he has 6months. Maybe less.
The Doctors have been very clear from the start. The sort of cancer he has is treatable but not curable. Any remission he gets will be temporary - there is no cure. We just don't know when it will get him. As long as the pain (and he is in pain, all the time) is controlled and his quality of life isn't awful that's fine by me. The longer we have him the better.
There is a case conference on Thursday which I really want to go to but can't. My firm is exhibiting at a huge conference / exhibition on Thursday and Friday and I have to go to it. The double bummer is that the conference is just over the river from hospital - I suspect I will be able to see the hospital from the car park of the expo. Shit.
I know Mum will be disappointed but I just can't get the time off. I'm going to try but I just don't think it's going to be possible. We've been working towards this for months and I have to be there.
Thursday, May 11, 2006
Back in hospital
I went to see Dad at the weekend and was surprised to see a *totally* different person. The long and short of it is that he was happy, smiling, joking and much more like his old self. Given the previous visit - and although the experience itself was very enjoyable - I was a little alarmed at this turn of events.
It transpires that Dad has had is medication changed. Instead of being on a 25mg or 50mg morphine patch he is now on a 75mg patch and the "lollipops" are now being upped to 400mg - they'd kill pain in a bull elephant...
Dad was flying as high as a kite. It was an eye-opener. It made me happy to see and talk to the "old Dad" but the gloss was worn off knowing why it was happening. Also the occaisional cog-slipping event didn't help - he'd talk to my Sister and call her my Mum's name.
He's had a bone scan and the results were clear. That means the secondaries aren't in his spine which is good news but the pain he gets is from the spinal collapse he's having. He is also due to have CT scan to see what's happening in his brain. The Doctor's seem to have some concern about the brain - he was readmitted with odd side effects to the chemo. It may well be that secondaries have made it there...
Finally, the Occupational Therapists are making noises about Dads discharge. Discharge? You what? Thing is, no-one has spoken to Mum about Dad coming home - she's only just recovered from the last burst. When you factor in that Dad is essentially doubly incontinent, bed ridden and in constant pain (allbeit under controlling medication) it is hard to see how she is going to cope. She has been offered home help but - get this - she will have to PAY for it. They save money by chucking Dad out of Hospital and once he gets home he's going to have to pay for his care. Mum simply isn't strong enough to do the things that need to be done with a bedridden man. She's strong but she's no Hercules.
We do what we can but we can't be with her 24/7...
This sucks...
It transpires that Dad has had is medication changed. Instead of being on a 25mg or 50mg morphine patch he is now on a 75mg patch and the "lollipops" are now being upped to 400mg - they'd kill pain in a bull elephant...
Dad was flying as high as a kite. It was an eye-opener. It made me happy to see and talk to the "old Dad" but the gloss was worn off knowing why it was happening. Also the occaisional cog-slipping event didn't help - he'd talk to my Sister and call her my Mum's name.
He's had a bone scan and the results were clear. That means the secondaries aren't in his spine which is good news but the pain he gets is from the spinal collapse he's having. He is also due to have CT scan to see what's happening in his brain. The Doctor's seem to have some concern about the brain - he was readmitted with odd side effects to the chemo. It may well be that secondaries have made it there...
Finally, the Occupational Therapists are making noises about Dads discharge. Discharge? You what? Thing is, no-one has spoken to Mum about Dad coming home - she's only just recovered from the last burst. When you factor in that Dad is essentially doubly incontinent, bed ridden and in constant pain (allbeit under controlling medication) it is hard to see how she is going to cope. She has been offered home help but - get this - she will have to PAY for it. They save money by chucking Dad out of Hospital and once he gets home he's going to have to pay for his care. Mum simply isn't strong enough to do the things that need to be done with a bedridden man. She's strong but she's no Hercules.
We do what we can but we can't be with her 24/7...
This sucks...
Monday, May 01, 2006
The Cancer Talks...
I had a pretty horrible experience at the hospital today. I really heard the Cancer inside my dad start talking...
I went up to QEH to see Dad but the person in the bed was not someone I recognised. The angry, rude, and very unpleasant man was not the man - my Dad - who was so charming, happy and witty at the Cancer Clinic last week. I have never heard him say the things I heard him say to my Mum and I today.
They say that Cancer talks - I heard it today. My Mum and Dad have been married for nearly 46 years. Their wedding anniversary is next week. They've had their ups and downs but underlying it there has been love. There was no love in my Dad today.
The hateful things he said made me bite my tongue several times. I can't bring it in me to tell him off. The human being saying those things is NOT the man who is my Dad. That person is my Father but he is not my Dad...
Does that make sense? To me it does. Biologically he is my father - but I don't like him as a person like this. He can't help it - it's not his fault. It's the cancer talking through him, eating him up.
The confused state and the weakness which brought him back into the Hospital were caused by any of the following things. Things like the (strong) morphine based medication; the chemo he has been having or the cancer itself. Any one of these things could cause it - but it's probably all of them in one shade or another.
The main thing I have to do now is make sure of Mum. My sister and I are doing what we can but I wonder if it can ever be enough? She says her training (she was a nurse for some years) helps her manage but I worry. You cannot listen to the things he said today and come away unaffected. I didn't. I will go and see her later this evening and talk it through with her...
------------
I am sorry but transferring the blog entries to this new weblog meant that the feedback comments and postings were lost. :-(
My apologies for that - they are important to me but I also needed to set some distance between my Dad and my main blog. It is difficult to explain why - may be I am ringfencing my emotions? I don't know...
Here I will continue to post and tell the story but I thought it better (for me?) to keep some distance between them... Thank you all for the emails and comments I receive. I really do appreciate them.
May your God bless you for what you do.
Paul
I went up to QEH to see Dad but the person in the bed was not someone I recognised. The angry, rude, and very unpleasant man was not the man - my Dad - who was so charming, happy and witty at the Cancer Clinic last week. I have never heard him say the things I heard him say to my Mum and I today.
They say that Cancer talks - I heard it today. My Mum and Dad have been married for nearly 46 years. Their wedding anniversary is next week. They've had their ups and downs but underlying it there has been love. There was no love in my Dad today.
The hateful things he said made me bite my tongue several times. I can't bring it in me to tell him off. The human being saying those things is NOT the man who is my Dad. That person is my Father but he is not my Dad...
Does that make sense? To me it does. Biologically he is my father - but I don't like him as a person like this. He can't help it - it's not his fault. It's the cancer talking through him, eating him up.
The confused state and the weakness which brought him back into the Hospital were caused by any of the following things. Things like the (strong) morphine based medication; the chemo he has been having or the cancer itself. Any one of these things could cause it - but it's probably all of them in one shade or another.
The main thing I have to do now is make sure of Mum. My sister and I are doing what we can but I wonder if it can ever be enough? She says her training (she was a nurse for some years) helps her manage but I worry. You cannot listen to the things he said today and come away unaffected. I didn't. I will go and see her later this evening and talk it through with her...
------------
I am sorry but transferring the blog entries to this new weblog meant that the feedback comments and postings were lost. :-(
My apologies for that - they are important to me but I also needed to set some distance between my Dad and my main blog. It is difficult to explain why - may be I am ringfencing my emotions? I don't know...
Here I will continue to post and tell the story but I thought it better (for me?) to keep some distance between them... Thank you all for the emails and comments I receive. I really do appreciate them.
May your God bless you for what you do.
Paul
April 03, 06 - A wee update...
Monday, April 03, 2006
Time for a wee update...
I went over to see Mum and Dad on Sunday. The good news is that he was quite chatty, happy even but still very very tired from the second round of chemo he had last week. It really takes it out of him. I know he was in two minds about whether or not to have it. He wonders if the price he pays for having the chemo is worth the value he gets from it...
The other reason for going over was to fix the bathroom door back on to its hinges. How did it get to be off its hinges? A short story...
Those of you who have met me will know that I'm not a small chap. My Dad used to be about the same size. He shrunk a bit as he got older but he is still carrying a more kilos' than he ought to be. He's lost a lot of weight since he got ill but he's still a big lad. It takes three to carry him upstairs - remind me to tell you about the ambulance teams that come to take him to hospital...
Anyway, one day he is in the loo and his legs go all jelly like. He takes a slow motion, somewhat dignified slide down onto the bathroom floor. Problems are (i) he's landed on a leg and can't get up (ii) his remaining leg and butt are in front of the door (iii) the door opens inwards. So, you can understand the consternation in the house when Mum realises Dad is stuck in the loo - with no chance of escape.
Now, Mum rings 999 for a Paramedic team. Goodness only knows what is the other side of the door but she can't get in to find out. She knows he's alive and in some pain. The Paramedics arrive in about 10 minutes (which is a pretty good show) and assess the situation. Other than that Dad is still talking and he is in some pain (remember the leg?) they don't learn too much - except some new swear words.
Decisions decisions. The only real option is to take the door off the hinges. This has to be a last resort because if they get it wrong the door will crush the patient. They need to unscrew the door from the hinges, and move it backwords out of the door. But the door opens inwards so the hinges are hidden and they can't get to them.
What now? Club hammers and wrecking bars is what - paramedics actually carry this sort of gear in their ambulance. So off they went with the heavy duty surgical instruments. Amazingly they got the door off and out of the loo without crushing Dad and they hadn't done anything like the damage I had been expecting - do paramedics get DIY training I wonder?
It was actually a very straightforward job to rehang the door. I used 2" screws instead of the tiddlers that were used before but it was job done and the door works surprisingly well for one which has been through such abuse. We need to sand a tiny bit off the door where the hanging wasn't 100% exactly the same as last time but that's no hardship.
Mum and Dad (and any visitors) now have a little privacy when they need to use the loo. Well, Dad doesn't because he uses a commode in the bedroom but you get my drift.
It's funny how something which could have been so serious can seem so funny when you read about it. We take the humour every time at the moment.
I went to see the specialist about Dad a few months ago. He said then that Dad had 3 to 6 months - we're well into that now. Let's see what the future brings. A least we get a smile on our faces now... Is that a good thing?
Time for a wee update...
I went over to see Mum and Dad on Sunday. The good news is that he was quite chatty, happy even but still very very tired from the second round of chemo he had last week. It really takes it out of him. I know he was in two minds about whether or not to have it. He wonders if the price he pays for having the chemo is worth the value he gets from it...
The other reason for going over was to fix the bathroom door back on to its hinges. How did it get to be off its hinges? A short story...
Those of you who have met me will know that I'm not a small chap. My Dad used to be about the same size. He shrunk a bit as he got older but he is still carrying a more kilos' than he ought to be. He's lost a lot of weight since he got ill but he's still a big lad. It takes three to carry him upstairs - remind me to tell you about the ambulance teams that come to take him to hospital...
Anyway, one day he is in the loo and his legs go all jelly like. He takes a slow motion, somewhat dignified slide down onto the bathroom floor. Problems are (i) he's landed on a leg and can't get up (ii) his remaining leg and butt are in front of the door (iii) the door opens inwards. So, you can understand the consternation in the house when Mum realises Dad is stuck in the loo - with no chance of escape.
Now, Mum rings 999 for a Paramedic team. Goodness only knows what is the other side of the door but she can't get in to find out. She knows he's alive and in some pain. The Paramedics arrive in about 10 minutes (which is a pretty good show) and assess the situation. Other than that Dad is still talking and he is in some pain (remember the leg?) they don't learn too much - except some new swear words.
Decisions decisions. The only real option is to take the door off the hinges. This has to be a last resort because if they get it wrong the door will crush the patient. They need to unscrew the door from the hinges, and move it backwords out of the door. But the door opens inwards so the hinges are hidden and they can't get to them.
What now? Club hammers and wrecking bars is what - paramedics actually carry this sort of gear in their ambulance. So off they went with the heavy duty surgical instruments. Amazingly they got the door off and out of the loo without crushing Dad and they hadn't done anything like the damage I had been expecting - do paramedics get DIY training I wonder?
It was actually a very straightforward job to rehang the door. I used 2" screws instead of the tiddlers that were used before but it was job done and the door works surprisingly well for one which has been through such abuse. We need to sand a tiny bit off the door where the hanging wasn't 100% exactly the same as last time but that's no hardship.
Mum and Dad (and any visitors) now have a little privacy when they need to use the loo. Well, Dad doesn't because he uses a commode in the bedroom but you get my drift.
It's funny how something which could have been so serious can seem so funny when you read about it. We take the humour every time at the moment.
I went to see the specialist about Dad a few months ago. He said then that Dad had 3 to 6 months - we're well into that now. Let's see what the future brings. A least we get a smile on our faces now... Is that a good thing?
20 Mar 06 - Latest update
Monday, March 20, 2006
Latest update and Podcast Number 7
Dear All
The Australian contingent have arrived, safe and sound. Dad's sister and son (my Aunt and Cousin) got in to Heathrow on Thursday morning.
Friday was spent with Aunt at Mum and Dad's place whilst Cousin and I chilled out at home. I wasn't too well on Thursday or Friday (even though I was up at 04:00 on Thursday for the pickup) and went to the doctor's for medication for a painful throat/gland infection.
The weekend passed in a whirlwind of rellies from Norfolk coming down.
On Saturday, Aunt's UK based daughter came down with her three youngest children and her other half to meet "Nan" - who she had never met... My Sister came over with hers which meant we had 15 in the house for the day.
On Sunday we had the two oldest children over with their children - this time a total of 16 were "in da house"!
It was a very nice series of meetings with bridges being built, ancient misunderstandings being resolved new people being introduced to members of the family who had never met them.
Sunday evening though was a somewhat more somber affair. My Sister rang and said that Mum was having a terrible time of it at the moment.
Dad had had a fall in the toilet earlier in the weekend which left him on the floor with his leg caught under him. Unfortunately he fell in such a way that Mum couldn't open the toilet door and she had to call 999 to get help. The paramedics had to take the door off its hinges to get in. His leg is hurting somewhat and it has left him using the commode in the bedroom. Any self confidence he had seems to be evaporating away with some speed.
Dad is not eating properly and refusing his medication. He is also pretty well bed-ridden which means he is not able to get to the commode, let alone the loo, in time - the washing machine was on pretty well all day on Sunday. Dad is very weak, in some pain and totally dependent on Mum.
We spoke and I said that she ought to dial 999 and get Dad back in to hospital ASAP. Mum refused to do that and said she had a direct dial number to the Macmillan Cancer ward which would speed things up when she rang on Monday. I went to see her and while I was there Dad cried out for her again...
Today I got an SMS from my Sister:
"Mum waiting 4 doc to visit. As hosp have said she got to go through doc to get him readmitted again. Mum hadn't thought of that. 999 Would have been quicker. I'm home doing washing as Mum's washing machine is playing up. Not going day job. "Aunt" and "Cousin" there until doc comes."
I really hope Dad does get readmitted. He has gone down pretty quickly since he was discharged after Chemo #1. If he doesn't then I think he will finish the giving process he seems to have started.
------------
Janet and I did a podcast last weekend but we haven't been able to finish it what with one thing and another. I think we'll be on hiatus for a while.
To all my friends and readers at Podcast User Magazine and also at Britcaster please bear with me - I'm not in the right frame of mind to write anything for the magazine just at the moment. I aim to have articles for the May edition...
Thanks for all the kind words of support - it really does help.
Paul
Latest update and Podcast Number 7
Dear All
The Australian contingent have arrived, safe and sound. Dad's sister and son (my Aunt and Cousin) got in to Heathrow on Thursday morning.
Friday was spent with Aunt at Mum and Dad's place whilst Cousin and I chilled out at home. I wasn't too well on Thursday or Friday (even though I was up at 04:00 on Thursday for the pickup) and went to the doctor's for medication for a painful throat/gland infection.
The weekend passed in a whirlwind of rellies from Norfolk coming down.
On Saturday, Aunt's UK based daughter came down with her three youngest children and her other half to meet "Nan" - who she had never met... My Sister came over with hers which meant we had 15 in the house for the day.
On Sunday we had the two oldest children over with their children - this time a total of 16 were "in da house"!
It was a very nice series of meetings with bridges being built, ancient misunderstandings being resolved new people being introduced to members of the family who had never met them.
Sunday evening though was a somewhat more somber affair. My Sister rang and said that Mum was having a terrible time of it at the moment.
Dad had had a fall in the toilet earlier in the weekend which left him on the floor with his leg caught under him. Unfortunately he fell in such a way that Mum couldn't open the toilet door and she had to call 999 to get help. The paramedics had to take the door off its hinges to get in. His leg is hurting somewhat and it has left him using the commode in the bedroom. Any self confidence he had seems to be evaporating away with some speed.
Dad is not eating properly and refusing his medication. He is also pretty well bed-ridden which means he is not able to get to the commode, let alone the loo, in time - the washing machine was on pretty well all day on Sunday. Dad is very weak, in some pain and totally dependent on Mum.
We spoke and I said that she ought to dial 999 and get Dad back in to hospital ASAP. Mum refused to do that and said she had a direct dial number to the Macmillan Cancer ward which would speed things up when she rang on Monday. I went to see her and while I was there Dad cried out for her again...
Today I got an SMS from my Sister:
"Mum waiting 4 doc to visit. As hosp have said she got to go through doc to get him readmitted again. Mum hadn't thought of that. 999 Would have been quicker. I'm home doing washing as Mum's washing machine is playing up. Not going day job. "Aunt" and "Cousin" there until doc comes."
I really hope Dad does get readmitted. He has gone down pretty quickly since he was discharged after Chemo #1. If he doesn't then I think he will finish the giving process he seems to have started.
------------
Janet and I did a podcast last weekend but we haven't been able to finish it what with one thing and another. I think we'll be on hiatus for a while.
To all my friends and readers at Podcast User Magazine and also at Britcaster please bear with me - I'm not in the right frame of mind to write anything for the magazine just at the moment. I aim to have articles for the May edition...
Thanks for all the kind words of support - it really does help.
Paul
Mar 03, 2006 - Two posts
Friday, March 03, 2006
Update...
I've just got off the phone with my mum. At last we've had some news which isn't bad.
I got a text earlier saying that my Dad has been readmitted to Queen Elizabeth's Hospital after the appointment he had this morning. This *freaked* me out. I had to ring my Mum this evening (I couldn't go round as Janet is out this evening) to find out the news.
Apparently - and this is the best chunk of news we've had for what seems like ages - Dad has a rare form of stomach cancer known as a "small cell carcinoma" which is very sensitive chemotherapy. The chemo in this case acts very rapidly and shrinks the tumor well and in some can produce remission!
Now, there's a long road ahead. Dad is still very weak and the chemo will give him a bad time BUT (and it's capital-letter-type-but) there is a chance, however small, that we could get remission.
Before this news we had no weapons to fight with. Now we have a weapon. Lets hope (and pray) that this weapon is sharp, cuts cleanly and kills the damn cancer....
...onward flies the bird...
Paul
posted by Parkylondon at 9:15 PM | 3 comments links to this post
Dad...
Dad continues to weaken and gets increasingly poorly. He spends more and more time asleep, energy levels continue to drop and he's starting to lose his short term memory. Mum thinks this latter issue may well be because of metastases (the secondary cancer cells) starting to get into his brain. God, I hope not. I'd rather pray for a quick end than for him to lose all self respect by becoming a shell.
He had an appointment to kick off his radiotherapy yesterday so Mum got him up, fed and dressed (a huge task in itself) ready for the transport to St. Thomas' in London. The transport was due to pick him up at midday ready for a two o'clock appointment. The transport didn't show up.
Dad has been promised radiotherapy for five weeks now and he hasn't even been assessed yet. It wouldn't surprise me if he was deemed too weak for it now. This will really get to me as I've been pressing for it for some time. The specialist dad has been seeing went completely tonto when he realised that members of his (new) team had dropped the ball so comprehensively. Now he's an outpatient (Dad's fault, he should have stayed in but that's another issue) I'm not convinced that he's going to get the treatment he needs like this.
When Mum rang St. Thomas' yesterday they said they'd been having problems with their "taxi" service - TAXI? What do they think they're doing? My dad can barely walk, let alone get into a car....
Upshot is that he's been given an appointment today at Queen Elizabeths Hospital in Greenwich with the same specialist he was due to see yesterday. I don't suppose he'll get everything done at this session but it's better than nothing.
I'll see how this goes and then get in touch with the Consultant next week.
On a connected note, it looks like Dad's sister is going to fly in from Australia in the not too distant future. When that happens I'll let you know but I hope Dad holds out for her. She's coming in with her son, David, my cousin and I think they'll be staying for a couple of weeks. I think it's best that she comes in before the end rather than comes in for the funeral. Hopefully she won't be around for that.
I think it's starting to hit home now. Dad is going to die and I don't think it'll be too long if things carry on as they are.
As I mentioned in an earlier post, you don't consider the possibility of your parents being anything other than immortal. My Dad was a six foot two, strong as an ox, 30 year British bobby - his beat was the River Thames. Before that he did nine years in the Royal Navy. To see him as he now cuts me up....
Update...
I've just got off the phone with my mum. At last we've had some news which isn't bad.
I got a text earlier saying that my Dad has been readmitted to Queen Elizabeth's Hospital after the appointment he had this morning. This *freaked* me out. I had to ring my Mum this evening (I couldn't go round as Janet is out this evening) to find out the news.
Apparently - and this is the best chunk of news we've had for what seems like ages - Dad has a rare form of stomach cancer known as a "small cell carcinoma" which is very sensitive chemotherapy. The chemo in this case acts very rapidly and shrinks the tumor well and in some can produce remission!
Now, there's a long road ahead. Dad is still very weak and the chemo will give him a bad time BUT (and it's capital-letter-type-but) there is a chance, however small, that we could get remission.
Before this news we had no weapons to fight with. Now we have a weapon. Lets hope (and pray) that this weapon is sharp, cuts cleanly and kills the damn cancer....
...onward flies the bird...
Paul
posted by Parkylondon at 9:15 PM | 3 comments links to this post
Dad...
Dad continues to weaken and gets increasingly poorly. He spends more and more time asleep, energy levels continue to drop and he's starting to lose his short term memory. Mum thinks this latter issue may well be because of metastases (the secondary cancer cells) starting to get into his brain. God, I hope not. I'd rather pray for a quick end than for him to lose all self respect by becoming a shell.
He had an appointment to kick off his radiotherapy yesterday so Mum got him up, fed and dressed (a huge task in itself) ready for the transport to St. Thomas' in London. The transport was due to pick him up at midday ready for a two o'clock appointment. The transport didn't show up.
Dad has been promised radiotherapy for five weeks now and he hasn't even been assessed yet. It wouldn't surprise me if he was deemed too weak for it now. This will really get to me as I've been pressing for it for some time. The specialist dad has been seeing went completely tonto when he realised that members of his (new) team had dropped the ball so comprehensively. Now he's an outpatient (Dad's fault, he should have stayed in but that's another issue) I'm not convinced that he's going to get the treatment he needs like this.
When Mum rang St. Thomas' yesterday they said they'd been having problems with their "taxi" service - TAXI? What do they think they're doing? My dad can barely walk, let alone get into a car....
Upshot is that he's been given an appointment today at Queen Elizabeths Hospital in Greenwich with the same specialist he was due to see yesterday. I don't suppose he'll get everything done at this session but it's better than nothing.
I'll see how this goes and then get in touch with the Consultant next week.
On a connected note, it looks like Dad's sister is going to fly in from Australia in the not too distant future. When that happens I'll let you know but I hope Dad holds out for her. She's coming in with her son, David, my cousin and I think they'll be staying for a couple of weeks. I think it's best that she comes in before the end rather than comes in for the funeral. Hopefully she won't be around for that.
I think it's starting to hit home now. Dad is going to die and I don't think it'll be too long if things carry on as they are.
As I mentioned in an earlier post, you don't consider the possibility of your parents being anything other than immortal. My Dad was a six foot two, strong as an ox, 30 year British bobby - his beat was the River Thames. Before that he did nine years in the Royal Navy. To see him as he now cuts me up....
Feb 25 2006 - Updating the family abroad
Saturday, February 25, 2006
Updating the family abroad....
This is the text of an email sent to a relative abroad so he can look at bringing his Mum (dad's sister) up to speed...
---------------
Hey AAA
Here's the gen with nothing held back... How you communicate this to your mum is up to you but please bear in mind that my Mum isn't aware of some of this - Mum *had* already guessed a lot when I told her *most* of it but she probably still hasn't accepted it yet.
1. Dad has a cancer in top node of the stomach. It's quite an aggressive little bastard and is already into his liver and is surrounding his pancreas. These secondaries are the things to worry about as liver and/or pancreas failures are usually fatal.
2. The Consultant says that any numbers we talk about are only "guess-timates" as anything can happen with this kind of thing - he could just succumb or he could rattle on for a while.
3. The chances of Dad being alive in a year are practically zero.
4. Depending on the speed of the cancer we should be looking at a three to six month timescale.
5. They have arranged to do radio-logy/therapy starting next week which will hopefully increase his chances of living longer. No guarantees though.
6. They are unlikely to do a full chemotherapy treatment as the Consultant doesn't believe he is strong enough to withstand it's effects - both during and after.
7. With close family abroad, the Consultant, when he has had to deal with these situations, believes an early visit by relations / partners / siblings is better for *most* people - but your circumstances may be different. He said it is often better for people to visit while the patient is still alive and be able to say "I saw them while they were still chipper and with it and they died X months afterwards" rather than just come over for the funeral. (AAA - I can't tell how BBB will react to this information or even if she can afford to come over. Can you let me know what the travelling situation is likely to be for her? I may be able to help...)
8. Your sister, TTT, is down this weekend, staying with my sister. She said she would talk to or text BBB but I said that I'd already spoken to you about doing it with the information in this email. If you want to talk to her about it beforehand CCC number(s) are +44 1111 111111 or +44 2222 222 222. I have cc'd CCC on this email.
If I think of anything else I'll write again but that's it for now.
Cheers for doing this mate. Take care
Paul
---------------
Writing things like this generates odd feelings. On the one hand it's kind of therapeutic as you are able to write it all down in a very dispassionate way and on the other hand you re-read it and realise you are writing about your own father - that's when it bites and man does it bite...
...sadness overwhelms...
Updating the family abroad....
This is the text of an email sent to a relative abroad so he can look at bringing his Mum (dad's sister) up to speed...
---------------
Hey AAA
Here's the gen with nothing held back... How you communicate this to your mum is up to you but please bear in mind that my Mum isn't aware of some of this - Mum *had* already guessed a lot when I told her *most* of it but she probably still hasn't accepted it yet.
1. Dad has a cancer in top node of the stomach. It's quite an aggressive little bastard and is already into his liver and is surrounding his pancreas. These secondaries are the things to worry about as liver and/or pancreas failures are usually fatal.
2. The Consultant says that any numbers we talk about are only "guess-timates" as anything can happen with this kind of thing - he could just succumb or he could rattle on for a while.
3. The chances of Dad being alive in a year are practically zero.
4. Depending on the speed of the cancer we should be looking at a three to six month timescale.
5. They have arranged to do radio-logy/therapy starting next week which will hopefully increase his chances of living longer. No guarantees though.
6. They are unlikely to do a full chemotherapy treatment as the Consultant doesn't believe he is strong enough to withstand it's effects - both during and after.
7. With close family abroad, the Consultant, when he has had to deal with these situations, believes an early visit by relations / partners / siblings is better for *most* people - but your circumstances may be different. He said it is often better for people to visit while the patient is still alive and be able to say "I saw them while they were still chipper and with it and they died X months afterwards" rather than just come over for the funeral. (AAA - I can't tell how BBB will react to this information or even if she can afford to come over. Can you let me know what the travelling situation is likely to be for her? I may be able to help...)
8. Your sister, TTT, is down this weekend, staying with my sister. She said she would talk to or text BBB but I said that I'd already spoken to you about doing it with the information in this email. If you want to talk to her about it beforehand CCC number(s) are +44 1111 111111 or +44 2222 222 222. I have cc'd CCC on this email.
If I think of anything else I'll write again but that's it for now.
Cheers for doing this mate. Take care
Paul
---------------
Writing things like this generates odd feelings. On the one hand it's kind of therapeutic as you are able to write it all down in a very dispassionate way and on the other hand you re-read it and realise you are writing about your own father - that's when it bites and man does it bite...
...sadness overwhelms...
Feb 6 2006 - Current Status
Monday, February 06, 2006
Current status
Sorry we've not done a cast today. I know we were due to do one and I said we would but my head and heart wouldn't have been in it. I went to see Dad this afternoon and although he was in fine form chatting up the pretty nurses etc I could tell he was not 100% together.
He's received another 2 or 3 pints of blood over the last few days and his internal bleeding will continue until they nuke it with radiology. This is expected to happen early this week - Monday or Tuesday at either St. Thomas' or Barts... The blood (while it stays inside) makes his skin pink and his appetite good. They monitor his blood pressure three or four times a day.
I read the nursing notes at the foot of the bed and the large GI [gastro-intestinal] growth is already into the pancreas and the liver. I cannot beleive that mum and dad don't want to know how long he has got... I do...
Today has been brought to you by the number 14 and the letter U
Current status
Sorry we've not done a cast today. I know we were due to do one and I said we would but my head and heart wouldn't have been in it. I went to see Dad this afternoon and although he was in fine form chatting up the pretty nurses etc I could tell he was not 100% together.
He's received another 2 or 3 pints of blood over the last few days and his internal bleeding will continue until they nuke it with radiology. This is expected to happen early this week - Monday or Tuesday at either St. Thomas' or Barts... The blood (while it stays inside) makes his skin pink and his appetite good. They monitor his blood pressure three or four times a day.
I read the nursing notes at the foot of the bed and the large GI [gastro-intestinal] growth is already into the pancreas and the liver. I cannot beleive that mum and dad don't want to know how long he has got... I do...
Today has been brought to you by the number 14 and the letter U
Posting from Feb - ... I was kind of expecting this
...but it doesn't make it any easier. I spoke to Mum earlier and she confirmed my private thoughts. Dad doesn't have an ulcer. It's stomach cancer. He's staying in over the weekend and getting more blood before he has a radio therapy session on Monday. He'll come home after that and then get into the chemo.
The Consultant says the cancer is treatable but not curable. Apparently it's already in his liver and there are shadows elsewhere. How long has he got? No-one knows at the moment. I'm going to see him tomorrow. What we have to do now is make sure he fights it... Not a great day....
The Consultant says the cancer is treatable but not curable. Apparently it's already in his liver and there are shadows elsewhere. How long has he got? No-one knows at the moment. I'm going to see him tomorrow. What we have to do now is make sure he fights it... Not a great day....
Post from 30 Jan 2006 - Good news and improving news
Sorry I haven't posted for a day or two.Today is brought to you by the letter P and the number 70. I've probably had them before but my Dad is in hospital so I reserve the right to repeat. His first name and last name both begin with the letter P and he is 70.
He's not feeling too good right now as he's received three pints of blood, three packs of saline, an aborted OGD - you really don't want to know about the OGD and why it was aborted.
Right now he's on nil-by-mouth until Wednesday when they'll try the OGD again. So he's worried, hungry (and therefore grumpy - I know where I get THAT from!) and uncomfortable.
He's on the way back though - he's in the right place and receiving brilliant care.
Best wishes Dad from all of us here! XxXxXxX
Now onto some different news:
The exciting thing is that I've been working very closely with a dozen or so podcasters and listeners to produce "Podcast User", the first PDF Magazine dedicated to podcasting. Podcast User will be launched within the next day or two.
From little acorns they say and if the variety of very high quality articles which touch on various aspects of podcasting are anything to go by there really will be something there for everyone.
So the best thing is to watch this space!
Amazingly, given my Dad's position, the Oblique Strategies say "(Organic) machinery" - spooky eh!
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