At least I am back briefly, to write about what has been happening to me recently, that is in the last month or so. I will try and refrain from being boring, so sit back and enjoy the ride.
As my readers will know, my right hand has been made virtually inactive by some sort of paralysis that appears to have been the result of the removal of a piece of cancerous tissue under the right shoulder which also required the cutting of some major nerves. there are technical names for all of this and I am delighted that my doctors know these names and can pronounce them. It really is to their credit. Suffice it to say that along with a sudden and I have say unexpected paralysis, has now come some quite incredible levels of pain. Since we have discussed these before as well, I will not go back and explore them apart from saying that the doctors and I had hoped to have the pain under control with a regimen of drugs applied in various dosages at various times during the 24 hour period that constitutes a day.
It has not been working as well as expected. Dosages have increased and times for taking the drugs have increased from three times a day to four times a day. In spite of all this, the pain has returned, often with greater ferocity than previously. Just yesterday when I sought an emergency appointment with my main pain doctor it happened to be set at a time that was 30 minutes to the time when my medications were due. On the way to the appointment, I felt strong but endurable levels of pain which built and built in intensity to the point that when the doctor and I were meeting, my breathing was through the mouth, in rapid gasping swallows of air in between pain on three levels, background pain, pain along the nerves still left working in my right hand and occasional shooting pain - pulses of what feel like violent electric jolts of pain whose frequency cannot be anticipated, controlled or managed in any way. Together these pains created a situation in which my doctor called for a nurse to provide me with a "breakthrough" shot of a new type of pain control medication. Suffice it to say that this also took some time to work its way into the system, but eventually left just the background levels of pain in situ. These are now "normal" and what I have managed to get used to.
Anyway, to get past this moment in time, we now have some medication that can be used to provide breakthrough pain control and provided that we use this well I should once again, hopefully, be able to manage the pain that appears to be ever present.
I am not sure how this will affect my ability to be available on line or indeed in person to those of my readers who have been kind enough to follow this saga and visit occasionally. I will not mention some of the other issues we have been having, perhaps it will suffice if I let you know that many of the drugs I have been placed on have certain impact on the bowels, none of them pleasant.
I will try and live up to my obligation to write to this blog as often as I can, but to tell the truth, my heart's not really in it - at least not a daily blast. There is nothing to say. Each day is much like the one before it and so on. However I will try. I will also try and communicate with friends more frequently as I am able, especially if this new drug regime works as well as expected.
So let's hear from you all - if any of you are still reading. I'm back and open for business, in at least a limited sort of way from today on.
Tuesday, March 31, 2009
Saturday, March 07, 2009
Living on the edge
For some time now I have been wanting to bring to the attention of my readers the nature of my daily regimen, so they can understand the things that take place in my life on a regular basis, things that I regard as an impediment to the daily life that I would like to have and that I suspect most people would like to have.
The daily regimen that is listed below will help all of my readers to understand some of the difficulties that face both Leanne and myself a daily basis. This is why I have called this particular entry "Living on the edge".
I don't think it is possible for many people to realise how difficult it can be for one person to have to wake up out of a lovely nights sleep at 5 AM simply because that person's partner requires assistance with both the preparation and insertion of medication and food into a Peg tube.
It is equally difficult I suspect, for people to understand how difficult it is, to stay up every night until 11 PM and once again both prepare and assist with the delivery of medication and liquid food.
This may not mean full time daily care, it does however mean that a person's life is disrupted and generally unavailable on a full-time basis.
The daily regimen:
5 AM -- medicines inserted into Peg tube
-- food tube detached
-- feed pole and container removed
11 AM
-- medicines inserted into Peg tube
5 PM
--medicines inserted into Peg tube
-- food container attached to feed pole
-- food tube attached to Peg tube
9 PM
--food container detached from feed pole
-- new food container attached to feeding pole
11 PM
-- food tube detached
--medicines inserted into Peg tube
-- food tube reattached
There are of course some different medicines inserted into Peg tube at each of these times, some remain the same. Dosages are generally the same however there is permission provided to alter some of the dosages dependent on the level of pain in my right hand.
Generally the food supply going into the Peg tube ends at just after 5 AM and starts again at 5 PM. This is generally varied only on weekends when some additional food is provided to ensure that the adequate dosage recommended by the nutritionist has been provided.
Suffice it to say that this regimen is enough to eat into a normal "working day" to the point that no working day is really possible.
If the nature of work was such, that it could be done from home with the breaks required by these feeding and medication hiccups, as well as all of the work required to clean and maintain the equipment and of course to assist me, the patient, with daily chores that are required to be done, but which need both hands - everything from tying one's shoe laces to providing assistance with daily ablutions and so on.
We are extremely fortunate to have a workplace that permit carers leave. I have no idea how we would cope were it not for the kindness and understanding of the senior management in the institution in which she works.
Anyway enough of this exploration of the dark side of life.
The bright side of life these days is made up of the opportunities that we have to meet with friends and to enjoy their company in spite of the limitations of the daily regimen. It is these opportunities that I suspect keeps us both sane and able to continue with the daily grind that is imposed by the daily regimen.
The daily regimen that is listed below will help all of my readers to understand some of the difficulties that face both Leanne and myself a daily basis. This is why I have called this particular entry "Living on the edge".
I don't think it is possible for many people to realise how difficult it can be for one person to have to wake up out of a lovely nights sleep at 5 AM simply because that person's partner requires assistance with both the preparation and insertion of medication and food into a Peg tube.
It is equally difficult I suspect, for people to understand how difficult it is, to stay up every night until 11 PM and once again both prepare and assist with the delivery of medication and liquid food.
This may not mean full time daily care, it does however mean that a person's life is disrupted and generally unavailable on a full-time basis.
The daily regimen:
5 AM -- medicines inserted into Peg tube
-- food tube detached
-- feed pole and container removed
11 AM
-- medicines inserted into Peg tube
5 PM
--medicines inserted into Peg tube
-- food container attached to feed pole
-- food tube attached to Peg tube
9 PM
--food container detached from feed pole
-- new food container attached to feeding pole
11 PM
-- food tube detached
--medicines inserted into Peg tube
-- food tube reattached
There are of course some different medicines inserted into Peg tube at each of these times, some remain the same. Dosages are generally the same however there is permission provided to alter some of the dosages dependent on the level of pain in my right hand.
Generally the food supply going into the Peg tube ends at just after 5 AM and starts again at 5 PM. This is generally varied only on weekends when some additional food is provided to ensure that the adequate dosage recommended by the nutritionist has been provided.
Suffice it to say that this regimen is enough to eat into a normal "working day" to the point that no working day is really possible.
If the nature of work was such, that it could be done from home with the breaks required by these feeding and medication hiccups, as well as all of the work required to clean and maintain the equipment and of course to assist me, the patient, with daily chores that are required to be done, but which need both hands - everything from tying one's shoe laces to providing assistance with daily ablutions and so on.
We are extremely fortunate to have a workplace that permit carers leave. I have no idea how we would cope were it not for the kindness and understanding of the senior management in the institution in which she works.
Anyway enough of this exploration of the dark side of life.
The bright side of life these days is made up of the opportunities that we have to meet with friends and to enjoy their company in spite of the limitations of the daily regimen. It is these opportunities that I suspect keeps us both sane and able to continue with the daily grind that is imposed by the daily regimen.
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