Thursday 31 December 2009


My dear husband died on Boxing Day morning. In the end his passing was a blessed relief. He had suffered enough.

He loved his family so much and liked nothing better than being in their company but he had been so ill that it took all his efforts to concentrate on merely existing and he had banned them from visiting. Being family they disobed him but only stayed for a short while so as not to exhaust him.

However, there was a natural coming together on Christmas Day. The children had Secret Santa's to open and their parents had asked if they could be together in our house so we agreed to throw the doors open again. My grandson-in-law said it was like The Waltons and the District Nurse said that she had never seen such as large family. It was good to have life in the house again after so many months of sadness.

OG was kept quietly and safely upstairs in his Hollywood bedroom away from the mellee but they all had an opportunity to spend time with him and, although he was unresponsive, we were told that he could hear everything, including the children's laughter wafting up from below. It was good that they were all able to say their goodbyes, apart from our beautiful grandson Vinnie who works in the Alps and couldn't get back in time. Even the young ones asked to spend time with him which, I hope, will help them to come to terms with his passing.

On Boxing Day morning one of my daughters and I sat either side of his bed, holding his hand, drinking coffee and talking to him and to each other. The subject strayed on to what to do with the Christmas lunch leftovers. I said I had seen an interesting receipt for bubble and squeak and Sara said that Jamie Oliver had cooked bubble and squeak on his TV show once and it looked so good. OG hated Jamie Oliver with a passion and wasn't that enamoured with leftovers (or bubble and squeak either come to think of it) and I think that just tipped him over the edge because I saw a tear trickle down his cheek and he was gone.

The funeral is on 14th January and although it seems a long while to wait he touched the lives of so many people and it will give us the chance to get things organised.

Tonight we have a divi out of the £2 coins he had been saving for the grandchildren. A couple of weeks ago he said that they should count them and share them out this Christmas and we will honour that wish. I will cook a huge steak pie with mashed potatoes and swede in his memory because that was what we always had on New Years Eve and we will remember him with love and laughter. Life goes on.

Thursday 24 December 2009


I would first like to apologise that I haven't had time to reply to comments and/or visit my blogging friends, but life has gone a bit mad here.

On Thursday it became apparent that OG wasn't able to transfer himself from the bed to the loo with my aid any more, The little shuffle movement that enabled him to turn himself in a half circle and plop himself down in his wheelchair had gone which meant that I had to bend down and physically move one foot at a time whilst propping him up. Too perilous and all the while he was freaking out that he would fall.

When the District Nurse saw this she swung into action immediately She ordered the fully adjustable hospital bed with air matress that she has been pressing him to agree to for weeks and rang around to get us help with lifting and moving four times a day. The bed was not a problem it arrived yesterday morning but getting help at Christmas is more difficult and as the help he needs is of the more personal nature he won't allow any of the family to get involved although he may have to accept this, allbeit temporarily.

So yesterday at 0800 the bed arrived and was errected. At 1000 the Community Nurse arrived to inflate the matress which wouldn't co-operate. Some hours and several 'phone calls later it was resolved, but we decided not to transfer him until we were sure it wasn't going to suddenly deflate itself again in the middle of the night.

In the meantime the ladies from the home hospice popped in and spent over an hour telling us why they couldn't help because there were maxed out until next next Wednesday. Then our daughter arrived and got roped in with the discussions.

During their visit OG began acting very weird, halucinating and saying strange things. They said that sometimes medication could do this and if he would agree to go into the hospice in Peterborough for a few days he could be stabalised and made more comfortable. He suddenly became very alert and lucid, going loopy, especially, for some odd reason, when they said it was in Peterborough. They immediately backed off of that suggestion (he has still got his fighting spirit, big time!) but asked if it was OK for them to tell the GP and get the medication changed.

Then the police arrived. At 5.30 pm on Monday night our local village post office had been robbed by three men in ski masks. Their get away vehicle had been dumped near our house and they were doing house to house enquiries in case anyone had seen anything. He asked if we had been in the village at the time. I said "I haven't been outside this house for weeks". He smiled and thought "I could do without comedians like this"!. If only he knew! It's surreal that in the middle of all this life continues remorselessly moving from mundane, to dramatic, to beautiful, to stressful, to funny etc. etc.

Then my lunch arrived. They had a buffet lunch arranged in the office and had kindly bought me over a plate.

Then a parcel arrived. A beautiful basket full of Irish goodies. Unfortunately the sender wasn't named, but I suspect it was from our wonderful Irish friends the Contessa and her toy boy. Thank you so much. We love you, even if you didn't send the parcel!

Then the GP arrived. She was so supportive and we had a long talk. She said they understood how hard it was for me and they would help in any way they could. She knew people that had taken the same decision to stay at home and had never regretted it. I cried, she cuddled me and made me feel better.

In between times the wretched 'phone wouldn't stop ringing with recorded messaged wanting to know if I was in debt and asking if I need help, etc, etc. I need help alright, help to rip this bloody 'phone out of the wall. (Note to self: I must get around to registering with TPS.)

Then we had a really good visit from our beloved granddaughter, her husband, their beautiful new baby Leyton, his older brother Noah (11 months old) and our two beloved great-grandaughters. Our life touched "normal" for a few minutes.

Today threatens to be just as mad. OG gets transferred to the new bed, which will be very traumatic for him, and then no doubt we will have the odd selection of medics, and wanabe medics parading through our home at various times of the day doing their best to help, but , in truth, totally exhausing us. And we can't tell them to stop coming because we desperately need them.

Stop it Ann, be grateful for what you have. Life is sweet. We are surrounded by the most amazingly dedicated and loving family and friends who shower us with beauty, love and kindness. And tomorrow is the day we celebrate the birth of the christ child. Like I said once before recently. the circle of life continues. Happy Christmas everyone.

Tuesday 22 December 2009


Little Layton arrived to join Elise, Orianne and Noah on 20th December. He was 7lb 8 oz at birth and is a perfect "rosebud" baby with black hair. Congratulations George & Dan for having such a beautiful family.

Saturday 19 December 2009


When OG first had difficulty managing the stairs we moved out of our Hollywood bedroom into one of our spare bedrooms downstairs. He was never happy there, longing to get back to the luxurious bedroom that he had spent so long creating and this week we finally achieved it. We had a stairlift fitted and, like royalty, he smoothly glided back upstairs again where he could gaze out over the fens from two floor to ceiling balcony windows.

Yesterday the featureless fens were coated in a new fall of snow making them all bright, clean and new and this morning the sun is shining. Very picturesque. I have moved my computer to the bedroom so that I can enjoy the view too and at the same time be nearby whenever he wakes up. Because he does sleep most of the time now, but when he wakes he likes me nearby. A small price to pay for one of the few pleasures that he has at the moment.

This year we have decided not to send out Christmas Cards, but will be donating the money to Cancer Relief instead. It seems appropriate.

Meanwhile we still await the arrival of our latest greatgrandchild. She (because I think that it's a girl) is now 7 days late. George is having a home birth and the snow yesterday caused a worry because she was told the midwives were snowed in and if she started she was to call an ambulance. Today looks OK again though, fingers crossed.

Thursday 17 December 2009


This video shows the winner of "Ukraine’s Got Talent", Kseniya Simonova, 24, drawing a series of pictures on an illuminated sand table showing how ordinary people were affected by the German invasion during World War II.

Her talent, which admittedly is a strange one, is mesmeric to watch. The images, projected onto a large screen, moved many in the audience to tears and she won the top prize of about £75,000.

She begins by creating a scene showing a couple sitting holding hands on a bench under a starry sky, but then warplanes appear and the happy scene is obliterated. It is replaced by a woman’s face crying, but then a baby arrives and the woman smiles again. Once again war returns and Miss Simonova throws the sand into chaos from which a young woman’s face appears. She quickly becomes an old widow, her face wrinkled and sad, before the image turns into a monument to an Unknown Soldier. This outdoor scene becomes framed by a window as if the viewer is looking out on the monument from within a house. In the final scene, a mother and child appear inside and a man standing outside, with his hands pressed against the glass, saying goodbye.

The Great Patriotic War, as it is called in Ukraine, resulted in one in four of the population being killed with eight to 11 million deaths out of a population of 42 million. Kseniya Simonova says: "I find it difficult enough to create art using paper and pencils or paintbrushes, but using sand and fingers is beyond me. The art, especially when the war is used as the subject matter, even brings some audience members to tears. And there’s surely no bigger compliment."

Please take time out to see this amazing piece of art. To view cut and paste this link into google

Friday 11 December 2009


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.

Tuesday 8 December 2009


Well, the long awaited liver biopsy results didn't produce the expected answers and marched us on to yet another, final, test which is an MRI Cholangiogram. By process of elimination we have been left with two suspects one of which is primary sclerosing cholangitis, the other cholangiocarcinoma. If it proves to be the former he will continue to be treated with steroids, if the latter it may be possible to insert a stent to drain the liver to relieve the symptoms.

Normally an MRI is an outpatient job, but he is now so weak that he will have to go in for an overnight stay and because he has such a fear of hospitals this will be a great trial for him, but they will allow me to say with him for as long as I want to.

So where are you now God? You are in my heart loving this man that has loved me all these years and is now so ill, helping me to me to return a small amount of the love he has shown me and giving me the strength to look after him.

Thursday 3 December 2009


I suppose a hard and fast believer would say that every prayer is answered. But what when that miracle doesn’t happen? Does the believer rationalise and say that we don’t know the mind of God and He has his own plan? I seem to have a foot in both camps at the moment.

I do believe that what happened in the hospital last week had to have been divine intervention. To be in hospital for an elective procedure, to have the right nurse on duty who took it on herself to order up two extra blood tests and rally her junior nurses into action during the crisis and for OG to pull through was not logical. That day he was too ill to move to the High Dependence Unit and the next day he was well enough to have a liver biopsy? Hey come on! As I have said before it could have been a “coincidence”, but I don’t think so.

But that was then and now he is deteriorating again. The GP is of the opinion that he actually has something called paraneoplastic syndrome which is a very rare autoimmune condition similar to Guillain-Barre but caused by cancer.

So where are your miracles now? Why would OG have been spared last Wednesday only to continue suffering? I think that an obstacle to belief in a Higher Power can be intellect. So, maybe now is the time to put my intellect outside the door and become, as instructed by Jesus, child like. Children have a great way of looking at things and, above all, trust. You can look for rational explanations but for sure there has to be some things the we just don’t understand.

Well, I may be rationalising here (and I’m sure that members of my family and some of my friends would say that I am) but OG has an irrational fear of being in hospital and needs me near him all the times and this is now being organised for us by local facilitators.

We have had the offer of help from the Marie Curie Rapid Response Team who work from 1500 to 0700, the District Nursing Team who cover daytime assistance, McMillan Nurses, the St Barnabas Hospice at Home Team if we need them and equipment to make things easier for us. Social Services will supply nursing care to help fill in the gaps if/when we ask for it.

Prior to Wednesday I had been knocking my head against a brick wall trying to get help and suddenly the wall disappeared and help is there in abundance. As my mad friend the Contessa would say, again, Praise be to God.