HOME AGAIN, AGAIN

I've become quite a wizz at power packing. Like a whirling dervisher I can pack a hospital bag in the blink of an eye. On Tuesday morning we left for hospital again, Tuesday afternoon OG had a Cholangiogram MRI and last night we were back home. The consultant is aghast that OG will not stay in hospital, because, apart from what is going on with his liver, Guillaine-Barre is a very serious condition in itself and normally requires several months of intensive inpatient therapy But OG is made of stern stuff and very, very determined. And of course at home he is warm, hydrated, clean, optimistic and comfortable, surrounded by loved ones.

This latest test ruled out primary sclerosing cholangitis and cholangiocarcinoma both of which have a truly dreadful prognosis, plus there is no evidence of any other cancer so we were massively relieved at that. But with all the prayers being offered up why should we be surprised!

So the puzzle remains, what caused the liver function tests to return such bad results? Although the liver now appears to be spontaniously recovering it's too early to say that this will continue. And where do we go from here? The consultant now recommends that OG rest at home until after Christmas with weekly blood tests and regular visits from the GP and District Nurse. He will also pop in himself just to keep an eye on how things are going. He has given us his mobile 'phone number and said we can ring him anytime we are worried. In the meantime he encouraged us to arranged for the physio to come in and start weaving his magic to get those useless limbs working again.

I was recommended to read this Patience Strong poem by guineapigmum.

When you know not where to turn, stay still, just where you are.
There is something yet to learn.
Be careful lest you jar the threads that fate is weaving in a pattern you can't see.
Be Passive.

Trust the Hand that works the looms of destiny.
Though it is your wish to set things right and put things straight,
Choose the wiser way.
Have faith.

With patience watch and wait.
There's a purpose in it all, as time will surely prove
And when you least expect it, you will see the mountain move.

I love it. I really need to let go and let God.

And while this has all been going on we are waiting the birth of our 5th greatgrandchild due tomorrow. The cycle of life continues.

THE POWER OF PRAYER

I know, a very contentious subject, but one that I feel I have to explore right at this moment. Without being boring, I had a "spiritual awakening" as the result of many years in Al-Anon and then at the prompting of my very good friend Bridie. At that time life had become pretty much unbearable, well I thought it was, but little did I realise that it was acutally quite good! But that is another story. One lesson to be learned here, enjoy the moment that you are in, no matter how difficult things are for you.

So....with the help of good friends and the support of an excellent evengelical church in Guildford I came to believe in the power of prayer. I went from being a sceptic to experiencing real miracles in my own life. Things that just defied logic.

This belief has stood me in good stead recently and I have been nourished and supported by the prayers and care of many, many good friends. Has it been working? I can only tell you that anyone else that I have known of with Guillaine-Barre Syndrome has spent months in intensive care. OG spent 7 days on a general ward and was then allowed home. Don't get me wrong, he is dangerously ill, but yesterday we had a deeply peaceful and contented day together. That is a blessing in itself and not many people can say that.

We have now accessed the "care in the community" system and have a great bunch of nurses on call to give us help and re-assurance. One nurse has a brother that had Guillaine-Barre Syndrome in the 1980's and knows all about it. Another nurse was horrified to learn that we were going to struggle to visit the doctor for a review meeting tomorrow. She said "he will come to you, I have flagged you as housebound and he has to come". That was a great relief.

Am I deluded? I don't care if I am, it works for me and I know that I am blessed to have OG and the family and friends that I have.

My prayer "request" now is that the medics find out what is causing his liver to malfunction and the suspected blockage is discovered and dealt with. It would also be good if he could eat because he is only able to manage a bit of cereal in the morning and he has lost a massive amount of weight. I have tried tempting him with all sorts of tit bits and he has tried all the usual stuff like complan, but just throws it up again.

I would just like to end by saying thank you so much to everyone who cares so much. Whether you "believe" or not doesn't matter. Your care is a form of prayer whether you know it or not! So there!!!

HOME AGAIN

Yesterday morning the neurologist bought some students to see OG and during the session he blurted out "now that the drip has finished you can go home". It was like a bolt out of the blue and my emotions ranged from "thank goodness for that" to "help! now we will be on our own again." It's quite a scary prospect really because he is still so ill and helpless.

But, stiff British upper lip and all that, we prepared ourselves to leave, not quite believing what he had said. Luckilly our daughter was on her way to visit and happened to still have his "home" clothes in her car.

Early in the afternoon the neurologist popped up again to say "before you go today you will need to see the Liver Consultant because we have to get a liver biopsy date confirmed", Ah! knew there was a catch. I don't actually think that this elusive breed of individual really exists although OG did say that he had spoken to one last week. Mind you, OG was high on morphine at the time and I'm quite doubtful that this conversation really did happen.

So we sat around all afternoon, occasionally randomly accosting the odd doctor or two to check out the facts. Yes, we did have to wait for the Liver Consultant, and no we couldn't go until he had been. When he still hadn't arrived at 1830 I said to the nurse "There is no way that a Consultant is still in this hospital at this time of night unless he is here to see a private patient". She said, "Ah, you know them so well". We left.

So, now we are out in the community again at the mercy of our elusive GP and the District Nurse. I have arranged a "review meeting" with the GP next Monday, his earliest appointment, called the District Nurse and spoke to her voice mail and made an appointment with the oncologist on Friday week. Fingers crossed that everything goes OK.

On the bright side OG had a great night last night and has slept all morning. He is so much better here at home and I am more at ease with my basic nursing skills than most of the highly paid "professionals".