Tuesday Update:

Looks like I'll be doing a daily update as there are so many people who want to stay up to date with what is happening with Roy.

Firstly I'd like to report that I had an excellent nights sleep :0)

Today was an much more emotional day than I'd expected it to be.

When I arrived at the hospice this morning Roy was looking very perky and with it.  We caught up on what had happened yesterday - a blood test had been done and that they were waiting for the results.

The consulting doctor came to see both of us.  She first wanted to take Roy's blood pressure both sitting and standing.  Sitting it was normal, but when she took it while Roy stood it plummeted - in fact she took it twice and both times it read 70/nil.  Straight away she said that Roy was no longer allowed to walk anywhere alone, if he needs to go to the toilet he has to let the nurse know and they'll move him in a wheelchair.  The doctor also had the blood test results that showed that although kidney function was still good, they were a bit dry - whatever that means??  The salt levels in the blood were very low, and there were signs that the adrenal gland is not producing whatever it is meant to make - these 2 things are prob contributing to the low blood pressure.

It was decided to take him off the Oxycontin and put him on Methadone  instead as his pain relief med.  This was to be started tonight and it will take them a bit to get the dosage right.  He will also be given another steroid to help with the adrenal gland problem.  And the steroid he is already on is being increased in the hope it stimulates his appetite.

The doc also hopes that the change in meds will mean that Roy is more alert and that the spaced outness and muscle spasms will become less.  Time will tell.

We also talked about the lump in Roy's neck which has increased in size quite quickly and is a bit of a concern because of the possibility that it will put pressure on the throat and will make both swallowing and breathing more difficult.  A consultation will be arranged with the Radiation Oncologist to see what his thoughts are and then we will make a decision.

All in all things are not looking good and for the time being Roy will be staying at the Hospice.  Not that he can come home until some changes are made here.

Tomorrow I am having a day at home to get 'stuff' sorted and I thing I will be doing is having a discussion with the Occupational Therapist about getting a hospital bed for Roy and a portable commode, so that when the time comes Roy can actually come home.

On Thursday I plan to talk to the doctor about the future :0(  I need to know what I can expect, what they expect will/might happen, and how long they expect Roy has.  Not that any of this info will be definitive as there are so many variable involved.  But I need to get an idea so that the children are more aware of what is happening with their Dad and can plan their goodbyes.

Things seem to be moving a lot faster now and I'm not sure that Roy has many more weeks left.  Having said that if they get his meds all sorted he could rally and 'chug' along for many more weeks.  At the end of the day the Lord will not call Roy home any earlier than He needs him and we will continue to enjoy each day we have left of our life together here on this earth.  One day at a time ;0)

Thanks for your continued prayers and support.  May the Lord bless each and every one of you.

Hugs
Jolanda