October 18, 2016

Update , it's been a long while.

so sorry to be missing, life has been exceedingly fraught to say the least. Mr Mogs cancer has spread and is now in his neck and nervous system. His tongue is paralysed at the left side and his face has dropped at same side. A form of Bells Palsy. He takes more care  speaking as his speech is slurred a little, especially when he is tired. Swallowing is now becoming difficult and food has to be mashed up or smaller morsels.
He recently spent just under a week in our local hospice for pain management  and they were fabulous. Mr Mog had already been attending day hospice once a week since the summer so it wasn't a completely strange experience.  He now has fentanil pain patches alongside oxynorm liquid as required. He also takes 4 gms of paracetamol a day and 900mg gabapentin 3 times a day.
Last Monday he was discharged from hospice and Monday evening/Tuesday morning had a fall in the bathroom . I struggled to help him, I managed to get him sat on the toilet but couldn't move him back to bed due to my health stuff plus his left leg not cooperating. I rang Hospice at home and district nurses both of whom were answerphone so ended up ringing 111 for an ambulance. With hindsight I should just have phoned 999 but at 1-30 in the morning my brain wasn't thinking straight. Ambulance men were wonderful and got him into bed. When they did his obs his temperature was very high. They rang primary care doctor to come and check him over but he refused. He kept saying sepsis to them even when they explained that Mr Mogs wishes were no hospital unless acute (I.e. Fractures) Mr Mog reluctantly agreed to go to hospital. In the meantime as they got him ready to transport Marie Curie rang us and they too tried to get primary care doctor to come out to no avail. I should just add that the centre they come from is just 2 minutes drive away.  They had to take Mr Mog to city hospital. He spent 5 hours on trolley. After 4 hours I was so upset seeing his pain I burst into tears. The sister took me out for a cup of tea and I think expedited the doctor examining him. He agreed it was chest infection. Gave Mr M a drip of antibiotics then sent him home with more to take orally. The kind ambulance men had moved us up in the queue to the resuscitation area at A&E as current wait otherwise was heading up to 9 hours apparently. Trouble with the resuscitation area was that while we were there 2 people passed away sadly. Fortunately Mr M didn't notice but I did hence the tears.
He is a lot better now from the chest infection but very frail and things are obviously getting worse.
When we got the news the cancer had spread Mr M decided to organise his funeral. So he did, or should I say I am doing under his instructions. He wants a cardboard coffin and cremation and his ashes to go in our friends garden in the village we used to live in as we were happiest there and still call it home. Our friend said she would be honoured. He wants it to be a celebration of his life with lots of colour and bells.
He thought a patchwork covering Autumn shades  for the coffin would be good and it has snowballed with friends all over the world making a square  or two.he also wants bells. Those who know us will remember that he always has a couple of tiny bells attached to his jeans. He started it when the grandsons were tiny  but has continued it. Friends think it's so I can keep track of where he is;) Friend in Surrey is coordinating it and arranging the stitching, then other friends are organising the transporting up to us via several stages. What has been so humbling and amazing is that as people signed up to make squares they have been saying  where they met us , or how they know us, or why they are using the yarn etc.  Lots of people have been messaging to say it has made them discuss their funeral arrangements with one another also.
So I think that's where we are today. Each day is precious, very precious and as Mr Mog said now he has the after death organised he can enjoy the now. A good way I think - don't you?
Ps Mr M has also chosen  some of his music. A track from sacred spirit cd and Rocking all over the world by Status Quo who are his favourite group:)