Well, yesterday I had to take Philip to see his new specialist - from the Palliative Care Unit - for an update on how all the new meds etc are going. Our appointment was for 11 and it was 1.30 before we got in! Poor Philip was not happy, sitting in a wheel chair all that time, it was beyond comfort.
Anyway, it turned out that there was a new resident starting that day (you see the resident first then the Specialist) and by the time we arrived he had only seen one patient! He finished with her at 1.15 so you can imagine how behind things were. On top of that there were two patients who had interpreters and so everything was thrown into chaos.
The specialist actually came in to apologise about 10 mins into the consult with the registrar. I hate to say it but in all the years we have been dealing with medical people he has to take the prize as the worlds most useless Dr!
Fortunately the Specialist sort of took over - she actually said I will finish with what I am doing an be back in 5 or 10 mins but ended up staying!! She also thought that we had a home visit booked and didn't realise that the Unit had booked the visit for us to come in. Next time it will be at home .... hallelujah.
Anyway - after all that the outcome is to drop the dex over the next week to 1mg and see how he responds. She doesn't want to drop it completely as it is helping him and I can see it does. Its just these damn side effects that I want to get rid of for him.
After all my ranting about med people I have to say that his specialist is one of the most warm and caring people I have struck over the last 14 years - we have been so fortunate in the medical people we have come up against - except for 'he who won't be bothered to be named' - we have always been treated with respect, compassion, dignity and understanding ... essential qualifications for those dealing with the lives of others. They have also people nice people if you know what I mean. So chalk up Sally as one to treasure - a medical jewel!
In answer to your question Ali - sadly Philip remembers only too well of the pain associated with his shingles!! The cocktail of meds he is on now looks like it is working and he is only getting the severe bouts a few times a day instead 12 or 15.
Yesterday I also had a session with a counsellor - part of the ongoing research from the Uni of Western Sydney and the Cancer Council - yesterday was mainly introducing ourselves and getting to know each other. She is going to come again in a fortnight and hopefully I can talk through some of the things I deal with and see if my strategies are working and if she has some other ideas.
I must tell you Ali - I 'kill' cardboard boxes!!
When things get a bit too much and I can feel myself ready to burst I get a cardboard box and take it outside and punch, tear, shred, kick and generally destroy it completely. If feels great! I can then throw it in the bin and the rubbish man can take my 'problem' to the tip!
Tuesday, July 31, 2007
Thursday, July 26, 2007
Mental 'safes' and pain
Philip is experiencing bouts of severe pain from his shingles. The blisters on his buttocks and groin have all healed up and he never got any one his leg but every now and again he gets a severe pain that runs from his toes right up to his mid chest along the nerve line. The pain is so severe he almost passes out and he screams in agony.
Drs have given him a morphine based pain relief but it can only be taken very 6 hours. Some days this pain happens 10 or 12 times - after one bout yesterday he told me he wanted to die, he was fed up with being sick and in such pain.
To see me react to these bouts you would assume I am very callous but I know if I let myself 'see' what pain he is in it might very well be the end of my calm composure.
I have dealt with this bloody illness for the last 13 years and have compartmented a part of my mind so that I don't see the mental and physical pain he is going through. My little 'safe' one of my 'walls'. If I didn't I couldn't function the way I am.
In all honestly this is a big roller coaster ride and I am sick of it all, there is no fun in this ride and just want to go off and sit in a corner and cry. But I know that if I do it will be the end of me so I just tighten the locks on my mental safe, add some more bricks to the walls and suck it in and continue to care for him. There will be time enough for me when this is over and as it could last for years yet there is no time to break down.
Unfortunately, sometimes things sneak up, I see a couple walking together, sneaking a kiss and I get so jealous. I would love nothing more than a cuddle and a kiss - hell I'd kill for s.e.x. - it has been so many many years since there was any form of intimacy with Philip. Now all I have to look forward to is emptiness and pain. Why do I have to miss out? Mustn't think like that. Philip misses out on even more. Please grant me the strength to cope with this all; make my safe; my walls, strong, I never want to open them or tear them down.
Drs have given him a morphine based pain relief but it can only be taken very 6 hours. Some days this pain happens 10 or 12 times - after one bout yesterday he told me he wanted to die, he was fed up with being sick and in such pain.
To see me react to these bouts you would assume I am very callous but I know if I let myself 'see' what pain he is in it might very well be the end of my calm composure.
I have dealt with this bloody illness for the last 13 years and have compartmented a part of my mind so that I don't see the mental and physical pain he is going through. My little 'safe' one of my 'walls'. If I didn't I couldn't function the way I am.
In all honestly this is a big roller coaster ride and I am sick of it all, there is no fun in this ride and just want to go off and sit in a corner and cry. But I know that if I do it will be the end of me so I just tighten the locks on my mental safe, add some more bricks to the walls and suck it in and continue to care for him. There will be time enough for me when this is over and as it could last for years yet there is no time to break down.
Unfortunately, sometimes things sneak up, I see a couple walking together, sneaking a kiss and I get so jealous. I would love nothing more than a cuddle and a kiss - hell I'd kill for s.e.x. - it has been so many many years since there was any form of intimacy with Philip. Now all I have to look forward to is emptiness and pain. Why do I have to miss out? Mustn't think like that. Philip misses out on even more. Please grant me the strength to cope with this all; make my safe; my walls, strong, I never want to open them or tear them down.
Thursday, July 19, 2007
Thursday update
Well, I think I am finally getting into a bit of a routine - have managed to get a few hours to myself (with toilet breaks for Philip) so decided to let you all now how I am going.
At the moment I am waiting for a plumber - Tuesday morning DIL rang about 7.30 to say HB to me and while we were talking I could hear a noise like water filling - in the back of my mind I was thinking it can't be the washing machine or the dishwashwer as they aren't on. Anyway when I got off the phone I wandered through the house trying to figure out what it was then it dawned on me - the solar hot water.
Raced outside in my 'jamies (only wear a summer nightie) braving the cold -3 degrees and climbed onto the retaining wall so I could get a clear view of the roof. Water everywhere - the hot water had decided it was too cold and the damn thing sprung an enormous leak. Raced to the front and turned off the water to the house plus the back up electricity to the system. Rang youngest son and told him my troubles - he then rang me back to say his contract plumber (does that mean he carries a machine gun in his toolbox??) would come over after lunch when he had finished the job he was on.
Well to make a long story short - he arrived said it was serious but because it was solar he didn't know how to fix it and rang someone else. The upshot is they will be here sometime this morning apparently lots of solar hot water systems gave up the ghost on Tuesday - I only hope they can fix it because we have no hot water and even worse no water. And to top it off the dishwasher tap burst around the same time........sheesh! Happy birthday to me!!
When the plumber finally arrive on Wednesday at lunchtime he informed me that one collector panel was totally stuffed and the other wasn't much better. He put in a bypass so I could at least turn to water on again and the tank would heat up overnight using off peak electricity. The panels are now on order - this time I got the frost resistant ones just to be on the safe side - $2400 installed !!!!
Anyway - on a lighter note - I got my new bed, the old waterbed died while Philip was in hospital and I order a new king sized single waterbed as it will only be me in the bed (and Fozzie at times) and so rearranged our bedroom so I now have a little sitting area complete with bookcases, TV (which I will probably never turn on) and a big armchair. Looks good.
Philip is doing OK although the shingles are continuing to give hinm a lot of pain - our Dr has given me some morphine based tablets to give him some relief and he is mainly using them at night so he can sleep. Still in nappies but what else can I do?
Unfortunately the dexamethazone he is on is causing other side effects - he has now got acne, a couple of warts on his hand, passes urine at least every 30 minutes, wants to eat continually and of course the shingles. Sometimes the cure is worse than the disease, fortunatley he is on a very low dose now - heaven knows what side effects he would get if he was on stronger dose.
Had Homecare come out and assess us on Monday - they will recommend that we get 1 hour 3 times a week to bath Philip, 1 1/2 hours a fortnight to run the vacuum over the floor or wash the floors and 4 hours a month for respite for me to go out - $150 a month. The contracts for it should be out next week and once they receive them signed back the service will start. Should be in a couple of weeks.
At the moment I am waiting for a plumber - Tuesday morning DIL rang about 7.30 to say HB to me and while we were talking I could hear a noise like water filling - in the back of my mind I was thinking it can't be the washing machine or the dishwashwer as they aren't on. Anyway when I got off the phone I wandered through the house trying to figure out what it was then it dawned on me - the solar hot water.
Raced outside in my 'jamies (only wear a summer nightie) braving the cold -3 degrees and climbed onto the retaining wall so I could get a clear view of the roof. Water everywhere - the hot water had decided it was too cold and the damn thing sprung an enormous leak. Raced to the front and turned off the water to the house plus the back up electricity to the system. Rang youngest son and told him my troubles - he then rang me back to say his contract plumber (does that mean he carries a machine gun in his toolbox??) would come over after lunch when he had finished the job he was on.
Well to make a long story short - he arrived said it was serious but because it was solar he didn't know how to fix it and rang someone else. The upshot is they will be here sometime this morning apparently lots of solar hot water systems gave up the ghost on Tuesday - I only hope they can fix it because we have no hot water and even worse no water. And to top it off the dishwasher tap burst around the same time........sheesh! Happy birthday to me!!
When the plumber finally arrive on Wednesday at lunchtime he informed me that one collector panel was totally stuffed and the other wasn't much better. He put in a bypass so I could at least turn to water on again and the tank would heat up overnight using off peak electricity. The panels are now on order - this time I got the frost resistant ones just to be on the safe side - $2400 installed !!!!
Anyway - on a lighter note - I got my new bed, the old waterbed died while Philip was in hospital and I order a new king sized single waterbed as it will only be me in the bed (and Fozzie at times) and so rearranged our bedroom so I now have a little sitting area complete with bookcases, TV (which I will probably never turn on) and a big armchair. Looks good.
Philip is doing OK although the shingles are continuing to give hinm a lot of pain - our Dr has given me some morphine based tablets to give him some relief and he is mainly using them at night so he can sleep. Still in nappies but what else can I do?
Unfortunately the dexamethazone he is on is causing other side effects - he has now got acne, a couple of warts on his hand, passes urine at least every 30 minutes, wants to eat continually and of course the shingles. Sometimes the cure is worse than the disease, fortunatley he is on a very low dose now - heaven knows what side effects he would get if he was on stronger dose.
Had Homecare come out and assess us on Monday - they will recommend that we get 1 hour 3 times a week to bath Philip, 1 1/2 hours a fortnight to run the vacuum over the floor or wash the floors and 4 hours a month for respite for me to go out - $150 a month. The contracts for it should be out next week and once they receive them signed back the service will start. Should be in a couple of weeks.
Monday, July 09, 2007
Got him home at last
Just a quick post and BIG THANK YOU to everyone who has sent me wishes and hugs in dealing with the latest blow to Philip.
I have been totally overwhelmed and amazed by all my wsonderful blog 'visitors' - blogging has opened a whole new world of friendship - one that transcends the boundaries of distance. It is a real lifeline to know there ared so many people out there who touch you life in some small way just through the power of a computer.
Philip is doing remarkably well for someone who the Drs thought would only last a few weeks!
He has been on dexamethazone and this has reduced the swelling in the brain and as a consequence he has regained some use of the right side of his body and his speech has improved.
Through the Palliative care unit I have borrowed an electric hospital bed, wheelchair, commode/shower chair so he is all set up in our lounge room - he can lord it over us all. It has been a rotten few weeks with one day thinking it would be over then the next thinking he would recover - driving back and forth from the unit and spending each day there - I have to admit I am really tired and so glad he is home even though it means more work at least I don't have to travel.
The boys built a ramp to cover the stairs at the front of the house and over the weekend they ripped out the bathtub and the handbasin from our bathroom and tore down the showerscreen. Next weekend they are going to lift up the floor tiles and lay the new tile bed down in preparation for completing the makeover the following weekend. In the meantime I can wheel Philip into the bathroom to use the toilet.
I am hoping that I will be able to get into a routine and be able to spend sometime in my workroom each day, but at the moment ut is all rather new to me. Took me until 12 o'clock this morning to give him breakfast, wash him, dress him, toilet him, strip the bed and make it with clean linen etc. Hopefully I can get that time down once I get into a better routine. I also bought a baby monitor so I can wander through the house without worrying.
I have a linen service that comes each week with clean sheets, piullowcases, towels, machintoshes (for the bed) and kylies (for the bed) and they take the dirty things away - all for only $8.50 - a pittance to pay for such a great help!
Now as well as everything else that is happening Philip has shingles - down the left buttrock, into the groin and it is now spreading down his leg - never rains it pours!
I have been totally overwhelmed and amazed by all my wsonderful blog 'visitors' - blogging has opened a whole new world of friendship - one that transcends the boundaries of distance. It is a real lifeline to know there ared so many people out there who touch you life in some small way just through the power of a computer.
Philip is doing remarkably well for someone who the Drs thought would only last a few weeks!
He has been on dexamethazone and this has reduced the swelling in the brain and as a consequence he has regained some use of the right side of his body and his speech has improved.
Through the Palliative care unit I have borrowed an electric hospital bed, wheelchair, commode/shower chair so he is all set up in our lounge room - he can lord it over us all. It has been a rotten few weeks with one day thinking it would be over then the next thinking he would recover - driving back and forth from the unit and spending each day there - I have to admit I am really tired and so glad he is home even though it means more work at least I don't have to travel.
The boys built a ramp to cover the stairs at the front of the house and over the weekend they ripped out the bathtub and the handbasin from our bathroom and tore down the showerscreen. Next weekend they are going to lift up the floor tiles and lay the new tile bed down in preparation for completing the makeover the following weekend. In the meantime I can wheel Philip into the bathroom to use the toilet.
I am hoping that I will be able to get into a routine and be able to spend sometime in my workroom each day, but at the moment ut is all rather new to me. Took me until 12 o'clock this morning to give him breakfast, wash him, dress him, toilet him, strip the bed and make it with clean linen etc. Hopefully I can get that time down once I get into a better routine. I also bought a baby monitor so I can wander through the house without worrying.
I have a linen service that comes each week with clean sheets, piullowcases, towels, machintoshes (for the bed) and kylies (for the bed) and they take the dirty things away - all for only $8.50 - a pittance to pay for such a great help!
Now as well as everything else that is happening Philip has shingles - down the left buttrock, into the groin and it is now spreading down his leg - never rains it pours!
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