Wednesday, September 23, 2009

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.

Sunday, September 20, 2009

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.

Friday, September 18, 2009

Oncologist's report . .

Stephen had a bad night. I gently massaged his back and legs with Ibuprofen Gel for half an hour in a desperate attempt to relieve the pain. He had a dose of morphine and then, thankfully, fell asleep.

It was with some trepidation that we drove to the hospital this morning to receive the results of his latest CT scan taken 10 days ago. I was particularly nervous as I thought his skin had taken on a yellow tinge earlier in the week.
Our fears were justified as we were told the tumours in his liver had grown considerably in spite of chemo. He is due to have a last bout of chemo next Tuesday but this has now been cancelled.
Was told that we can survive on a very small part of our liver (if that makes sense) - which was encouraging. It's now a waiting game.

We go to the Hospice next Wednesday for complementary therapy which I hope will help to control Stephen's pain.

Meanwhile I received a letter from the hospital telling me all about the endoscopy which I am to have (endure) next Saturday - 26th. After reading the small print - am of a mind to forego the experience. A bag of nerves as it is and, having had an xray which should reveal any abnormalities, can't see the need for invasive action which could affect me for a while.

Have put myself on a strict regime of eating small meals - slowly. Sitting up straight whilst eating. Walking about for 20 minutes after every meal.
Following a diet of no alcohol/coffee - no dairy foods (fats) - no chocolate - and sticking to fruit such as bananas and apples (no citrus fruits/juices). Can eat goat's cheese and goat's butter (very nice) and Feta cheese.
Bought soya milk today - and will give it a whirl.

Also - and think this is The Cure - sipping warm drinks of "Slippery Elm" plus honey three times a day. De-lish!

Hmmm . . . . .

Wednesday, September 16, 2009

Shining Lights amid the gloom . . . European Gold Medallists . . .

Things not too good . . .

This photo was taken over a month ago - when Stephen was beginning to lose his hair and beard - resembled a pirate! Looked good, and seemed to be coping really well after first session of latest chemo, but is sadly now unrecognisable.

His appearance changed dramatically 2 weeks ago and things have not been easy with most of my time taken up trying to keep him comfortable and as happy as is humanly possible, given the circumstances.
He is now having difficulty in climbing the stairs and walking has become a problem. Stephen has reacted very badly to this last two sessions of chemo (has final (4th) session next week) - which seems to have weakened him and he looks yellow this morning. His hair and beard have gone walk about and his face is badly swollen with steroids. Would be unfair to post a picture of him in his present unrecognisable state.
Slow-release morphine has been prescribed during the day and a separate dose of morphine is given at night to help Stephen sleep.

Rang the Hospice this morning and asked for help with therapies to make him feel better and help him relax - reflexology and massage for example - plus some restorative yoga for myself.
Saw Upper GI consultant yesterday - had xray and am to have an endoscopy on Saturday 26th September (which I understand is akin to having a hosepipe thrust down your throat.)
A weekend experience I could do without.

On a lighter note - my grand-daughter Polly, and her (coxless pair) team-mate Jen won gold medals at the European Championships in Poland 2 weeks ago. Will post a pic of them, later.
Polly is the blonde - 6'1" - and Jen, (ex Cambridge Blue - now studying medicine at Edinburgh with Polly) is a magnificent 6' 3"! The girls look marvellous together - like tall beautiful trees.
I am so proud and their success brought a badly needed bit of sunshine into our lives . .

Many many congratulations to Angela whose work is being showcased in the October and future issues of Popular Patchwork. Well done! I told you so . . . . . and there'll be lots more . . . .

I'm very sorry and extremely disappointed that the publication of my 2010 BOM Beginners Heirloom Sampler for the magazine has had to be postponed indefinitely but, as I'm sure you can appreciate, present circumstances make it impossible to give time to anything other than Stephen's needs for the foreseeable future.
Maybe later . . . . .
You can see the results of this year's GPQ samplers at (click on sidebar) and then click on Babs Sampler Beauties!!

Patsy Thompson has a new DVD out. Feathers - version 3. I've ordered one. Might not have time to sew but I can sit with Stephen, relax, and enjoy Patsy's latest work. Her on-line 'free machine' tuition is second to none and to be highly recommended. I've learned a tremendous amount from her. Click on the side panel which will take you directly her website (