Hospice and things . . .

Stephen is still in the Hospice, which has done him a power of good - allowing him to have a complete rest and enable me to have some free time to see my family in Scotland and catch up with housework and such joys.

The Hospice is a marvellous place and Stephen is being looked after by a tremendous staff of doctors, nurses and helpers. The food is good and they have Sky so he can watch sports whenever the mood takes him and he feels well enough to concentrate. Stephen's legs are very swollen - are massaged daily by the 'oedema' nurse and he has to wear elastic stockings during the day in an attempt to reduce/move the fluid that has collected in his legs.

I don't think about quilting nowadays, but Patsy Thompson (who works in a hospice in the States) did spring to mind.

Yes, Patsy, it is a wonderful place and a tremendous help to both Stephen and myself.

Stephen now says how much he regrets having smoked heavily over the years and drunk more than his fair share of alcohol. Had he realised the amount of damage he was doing to himself, plus the pain and discomfort he would suffer, says he would have kicked the ghastly habits into touch years ago.

I spent 2 very distressing days in Edinburgh, with my grandson who is still in hospital where he will probably remain for some considerable time. He is not at all well - and I felt so sad and helpless about everything that is happening around me that I sat in the train and cried all the way from Edinburgh to Lockerbie, at which point I pulled myself together and had a cup of tea.

A couple of pastel drawings . . . .

Am not in a position to sew for the time being, so have resorted to my sketch book and an old hobby - drawing - using soft pastels . . .

Very satisfying, but messy!

Stephen going into Hospice for a few days respite.

Stephen is going into the Hospice on Tuesday for a few days while I go north to see my youngest grandson who is in hospital and has asked to see me.

Meanwhile here are a few quilts I've made over the years - to show I've not completely lost interest. Would quilt them much more extensively nowadays - especially the Square Dance.

Have been sketching some original designs for a few quilts (whilst I sit with Stephen) that I eventually hope to show. I'm pleased with the result. Need to get the colours right and start stitching. That is, if I ever have time or inclination to sew again.

The quilts shown above are:

English Patchwork over papers - "Breakdown" - Silks, cottons, on silk organza layers.

Double wedding ring - "Marriage" (contains my original wedding ring). Some gold lamé and cottons. Hand quilted using gold thread.

Tessellated flowers - Square Dance or "Hot Flush." Mainly cottons - machine quilted.

Grey strip patchwork - "Depression". Cottons - hand quilted using red thread.

Butterfly is logo of pharmaceutical company, manufacturing tranquillisers.

Stephen admitted to hospital . . .

Stephen admitted to hospital yesterday afternoon with jaundice and an increasingly swollen abdomen and legs. Blood tests taken on Tuesday evening revealed alarming high readings and suggested a blockage in his liver or/and bile duct. Inserting a 'stent' was suggested to alleviate the jaundice and terrible itching that accompanied it. He is NOT well, and I was advised to call the family. This afternoon I was informed that an operation would not be advisable given Stephen's advanced condition so I brought him home.

Stephen - Sunday 10th January 2010

Am worried about Stephen. He has stopped eating. Has no appetite - food is tasteless - takes all his time to drink the high energy liquids that have been prescribed by the hospital. At my wits end cooking food that I hope will temp him to eat - to no avail. Stephen managed to drink half a bowl of broth my neighbour kindly made for him today - but would eat nothing else. M makes the best broth in the world for which I'm grateful. Stephen has no energy - everything is an effort and he is getting thinner by the day. His legs are thin and I can feel his shoulder bones sticking out. He was such a strong, powerful man and it's distressing to see him virtually shrink before my eyes. I had a big weep this evening and am so fearful for the future.

'snowed under' with flowers . . . more arrived today . . .and very nice too . . .

I put the flowers in the conservatory each night. It's very 'cool' in there and the flowers last much longer.

Birthday is over . . .

A very quiet birthday morning was spent in front of a big log fire, drinking coffee and reading the papers. Stephen was in good spirits which was as good a birthday present as any.

My brother David, sister Sue and her partner Bob, called to see us in the afternoon which was much appreciated and we enjoyed their company. Stayed for afternoon tea as I had made some cakes. A very nice moist Victorian Fruit Cake, a large Double Ginger Cake, and some Fig and Prune Tea bread spread liberally with butter. Figs and Prunes sound ominous - but I made the (laxative) tea bread especially for Stephen and, as happened, it turned out to be bloomin' delicious, so everyone wanted a slice - or two. Moist and fruity.

Stephen became very weary by five o clock - as you can see from the above photo - and was not at all well this evening. I am worried as his colour is not good and his eyes are sunken.

The Outreach Team from the Hospice are calling to see him in the morning - to make sure he is alright. Let's hope they can do something to make him feel better.

It's my birthday today. Wot a difference a year makes! Present day and last year's photo.

Am surrounded by flowers!

Can you keep a secret? I'm 76 today!

HAPPY NEW YEAR TO YOU ALL . .

Feel very apprehensive about what 2010 may have in store for us.

Stephen is not at all well tonight and has slept for most of the afternoon and evening. Is in bed with rigors and heavy sweating.

I shall contact the nurse first thing tomorrow morning.

We are very fortunate to have the support of the Outreach team at our local Hospice - Cancercare - District Nurses - a wonderful Oncologist and a great Pain Management Team at the Infirmary - plus our local GP and surgery nurse. These fantastic people are helping to prolong Stephen's life and keep him as comfortable as is humanly possible.

I am so grateful for their help and encouragement at this very difficult time.

Latest picture of Stephen . .

Stephen face is puffed with use of steroids and beginning to take on a yellow tinge. Not good. We visit the Hospice tomorrow morning and district nurse is calling to see him at home in the afternoon.

A 'downsy' couple of days . . .

I spoke too soon on Saturday.

Stephen was fine until tea-time when he suddenly went into a decline - and spent the whole of Sunday in bed. He got up this morning but has been poorly all day and sat huddled in front of the fire this afternoon and evening. Doesn't want to eat - feels ill -has difficulty going to the lavatory - his abdomen is swollen and hard but won't allow me to call the doctor or take him to the hospital or hospice. Gets very angry when I mention it. He saw the oncologist on Friday and is waiting for the results of a blood test and an appointment for yet another MRI scan and a report from the bowel surgeon in Manchester. He may need an op.

I talked to the District Nurse this afternoon and she made some suggestions and is calling to see Stephen on Wednesday afternoon to see how he is faring.

Outsiders remark how well he looks - considering what he's got - and of course he puts on a brave face. Inside the house it's a completely different matter.

It is very distressing.

I had to go to the hospital this morning for a barium meal. Much better and far less traumatic than having an endoscopy I can tell you.

Between us, Stephen and me are a right old pair of crocks. Almost ready for the knackers yard methinks!

LATEST UPDATE ON STEPHEN . . .

Have not posted any details about Stephen for a while as things were very dicey at times, but for those of you who are interested and have been following his progress, I will now bring you up to date.

Prof B at the Hospice arranged for him to see the Pain Management team at a local hospital where Stephen underwent a spinal block in an attempt to stop the excruciating pain.

I'm glad to report that it worked - and Stephen is now free from pain. He still has 'upsy downsy' days when he seems 'reasonably' fine one day but confined to his bed on other days with exhaustion, no appetite, and deep sweats.

His appetite is poor, as I mentioned, so I try to coax him to eat - serving tiny portions of very tasty food as his taste buds have changed - probably affected by the increased doses of morphine. High energy drinks have been prescribed which 'taste awful' says Stephen - but mixed with lemonade are 'just about palatable.' However, these drinks keep him going during the non-eating days.

He takes steroids (magic pills) when he is at a very low ebb as they give him energy, decrease the sweats, and increase his appetite, but have to be taken with discretion.

The downside is they make him very argumentative!!!

Stephen's hair is returning since the chemo (which didn't work)and he feels 'fairly human' once more, but is losing weight at a rate of knots (now weighs less than me) which is to be expected given his decreased appetite.

Stephen knows he is on 'the slippy slope' but is making the best of the good days, of which today is one. It's a lovely day. The sun is shining. He feels 'good' he says and fancies scrambled eggs!

So we are - as they say - 'making hay whilst the sun shineth . . . . .'

HAPPY CHRISTMAS TO YOU ALL . . .

Many thanks to everyone for your cards and kind good wishes . . .

We are making the best of things - a very very quiet Christmas at home. No turkey - no visitors - no travel.

On a happier note . . . preparations for an Oz christmas . . .

My two Australian great grand-daughters, Lily and young Madeleine, decorate the Christmas tree . . . in Aroona - on the sunshine coast - Queensland.

MERRY CHRISTMAS? Not for this poor 18 year old lad. Tony Blair and all those MP's who voted for WAR should hang their heads in shame!

No legs - one arm with fingers missing - nose and lips blown off!

Stephen and I are dreadfully disturbed by this image and, as Stephen says, we think WE have troubles!

See side bar - where you can HELP these poor lads.

Still desperately ill, but fighting -Stephen - looking better this morning after traumatic weeks on chemo. Palliative care - morphine from now on.

SINGING GARDEN CAKE!

The wonderful ladies from St Thomas's Church . . . congratulations!

Eighteen wonderful ladies raised £8,000 ($13,000+) for The Christie Hospital, which specializes in cancer treatments and is known worldwide.

Hilary and the girls (plus one man) made The Singing Garden Quilt - from a BOM created by me and published by Popular Patchwork magazine earlier this year. The group are to be congratulated for a superb effort!

I was invited to draw the winning ticket at their Quilt Show on Saturday but was unable to do so due to the dreaded Swine Flu plus looking after Stephen who is very ill.

It is an understatement to say how disappointed I was at not being able to attend the ceremony - and missed a lovely lunch to boot.

Luckily, Katy - web editor from popularpatchwork.com - rose to the occasion and did the honours in my place. I understand a piece of the special Singing Garden Cake (see above) is winging it's way to me by Royal Mail. It's a super cake isn't it - and what a good idea!

The magazine will be featuring pictures of Singing Garden Quilts made by subscribers - in next month's edition.

St Thomas' Church Quilt Group.

I HAVE SWINE 'FLU. . .

Stephen and Patsy Thompson's Vol 3 feathers DVD to cheer us up..

Stephen is not well and we have been to and from the Hospice and the hospital these past few weeks. He is receiving therapies which help him somewhat - but the pain in his back is becoming unbearable. Drugs have been increased but the morphine doesn't seem to touch the pain - just makes him dopey. He has been referred to a Pain Management consultant at the hospital and is to have a spinal block - i.e. injection into his spine - next Friday - in a desperate attempt to give him some respite. This will require anaesthetic and overnight stay in hospital.

The nights are bad and I feel helpless not knowing what to do. At the end of the day - in spite of help from the Hospice, local hospital and Macmillan/District nurses - it's still a case of dealing with things yourselves.

On a happier note - we have been watching Patsy Thompson's latest DVD (3rd) on Feathers. Click on sidebar - Blog List or Interesting Websites - to access her site. (www.patsythompsondesigns.com) A treat in store!

Not only does Patsy have a lovely face and reassuring voice - which Stephen finds restful and appealing, but her skill at free motion quilting is a triumph.

I defy anyone not to be able to stitch feathers when they have seen Patsy in action.

She is much copied by many professionals.

Patsy helps at a Hospice in the USA which makes her presence in our sitting room doubly welcome at this sad time.

The Hospice . . .

After two very painful days and nights, Stephen agreed that outside help is needed and finally decided that the local Hospice is the answer at this stage of his illness - now that all treatment has ceased - and not the hospital with admittance to an understaffed geriatric ward - the main point of a hospice being pain relief and palliative care - with emphasis on 'care.'

After talking to the District Nurse, and making a few phone calls, it was arranged for Stephen and myself to see the Professor in charge of the hospice early this morning.

Professor B took detailed notes, gave Stephen a physical examination - asked oncologist at hospital for copies of Stephen's medical records, including results of latest CT / MRI scans, and arranged to see him again in 2 weeks. He doubled the drugs - arranged for a Macmillan nurse to call in 3 days to see if the increased drugs have deadened the pain as opposed to merely making him drowsy - and is considering a spinal block - done under anaesthetic - if the new drug regime does not work.

We both felt a great sense of relief and Stephen feels he is in good hands - with people who care and know what they're doing - and understand his anxieties.

The hospice is situated on the outskirts of town in lovely surroundings - trees and flowers abound everywhere. There is a sense of calm within the building and they have some very pretty curtaining in the lounge areas, which would make a jolly nice quilt. Talking of which, I may use one of my Singing Garden quilts as a raffle prize with proceeds to the hospice as a thankyou for the help they are giving Stephen and myself. Will give me an incentive to get it layered and quilted.

Oh dear . . .

We have another appointment at the hospice tomorrow morning - with the complementary therapy team - to see if massage and reflexology will benefit Stephen and help him to relax.

They also provide residential and day care which provides respite for both patient and carer.

I feel a load has been lifted from my shoulders - by the sheer fact I will receive support in helping Stephen to deal with this dreadful disease - and that he can now enjoy what is left of his life without the excruciating pain that has devastated him these past weeks.

Ghastly night . . .

Yesterday and last night was one of the worst yet. Stephen was in severe pain in his back for most of the day - not even the morphine could touch it.

Took to his bed in late afternoon - by evening was in a dreadful state - but of course, being a weekend, nobody was available - it's all ansaphones.

A lesson to be learned here - don't fall ill over a weekend!

I massaged his back with Ibuprofen Gel which does give him a bit of relief - and he took slow-release morphine plus a good dose of liquid morphine to alleviate the pain. I plumped him up with feather cushions and a V shaped cushion in an attempt to get him into a comfortable position as he felt worse lying flat. Ran up and downstairs for remainder of evening until I fell into bed at midnight. Got up through the night to keep an eye on him. Exhausted.

However, Stephen feels much better this morning. Insisted on getting up and dressed for breakfast - but is staggering a bit and holding on to bannisters and furniture.

We'll have to see what the day brings.

Have postponed my endoscopy for the present time as I seem able to control the symptoms with diet and yoga breathing plus am convinced the acid reflux is triggered by anxiety and stress. I talked to a nurse in the endoscopy department yesterday who agreed that now is not the time to put myself under extra stress, but can have one if symptoms don't improve.

So that's a relief.

Julie - many thanks for your email. Have noted your endoscopy experiences - with and without sedation. Yes, will take your advice and go down the sedation road. Thankyou for that.