Tough Times

The past few months have been rough. Although expected, the shock, and manner, of Stephen's death sent me into a downward spiral. I tried to assuage my grief by working overtime in the garden - lugging large bags of compost - to a point of exhaustion which I thought might help me sleep - but I collapsed and ended up in an ambulance, sirens blaring, to spend a couple of days in the Coronary Care Unit at the local hospital.

I find moments come out of the blue when I relive some of the horrors of the past year, remembering Stephen's pain and desperate physical condition during the last few weeks of his life. An appalling way to die.

I found solace in mindless knitting - something I hadn't done for 30 years. Am about to finish 9th jumper since Stephen was admitted to the Hospice. Same pattern - different wools. Will be able to knit my tenth - blindfolded.

Have discouraged visitors and not been out - apart from the local shop.

However, 3 weeks ago discovered my lovely engagement ring, Stephen's heavy gold signet ring and cash was missing - as was the kitchen door key.

Had been burgled. Entry had been forced by means of a tiny conservatory window and inner mesh frame (to keep out flies) had been broken. Police were called and forensics took fingerprints.

Spent miserable days and scary nights - listening for sounds of intruders - imagination working overtime.

The local police were marvellous. Supportive and reassuring. After 9 days was informed the burglar had been caught (forensics - he had previous form) and confessed to the crime. My engagement ring was found - sold by an accomplice to a small jeweller's shop in the city (no questions asked for £450 cash.) Cost £2000 many years ago.

Was a relief to have my ring returned, but the experience, on top of everything else, has depressed me to say the least and reinforced my loss of Stephen.

Am so tired, having been to the Hospice this evening for a memorial service for families to remember patients who died there between March and May this year, and light a candle in their memory.

Was alone. Couldn't handle it - burst into tears and walked out before the service proper had begun. All the trauma and upset over the weeks - and year - have taken their toll.

I am lonely and devastated.

Stephen died at 11.10am on Saturday 13th March.

Stephen spent a very painful final week in the hospice. It was distressing to watch and a relief when he died.

The funeral is to be held on Monday 22nd March at 2pm.

MIRACLE at the HOSPICE.

We thought Stephen was dying when admitted to the hospice a week ago. The family gathered together over the weekend thinking it would be the last time they saw him.

I was distressed in the extreme and howled as I walked into my empty house - thinking 'this is it!'

However, much to everyone's surprise Stephen rallied, and by Wednesday was sitting in an armchair - watching the football match between ENGLAND and EYGPT - reading the newspaper - and making detailed drawings of his cancers between times.

He was, after all, an art teacher before his retirement.

Stephen is still obviously very ill, but the doctors are amazed at his tenacity and strong will to survive!

This may well be a case of 'the last rose of summer' before the fall - as his right foot is still very badly infected and dripping lymphatic fluid - but the fluid on his swollen stomach, legs and fluid-filled scrotum has lessened thanks in main to the wonderful nursing at the hospice and the ministrations of the resident oedema specialist. He is comfortable and not feeling any pain, which is a mercy as he was carried to the ambulance screaming in agony whenever anything touched him.

Stephen

It is 4.30 am and I am unable to sleep.

Stephen was taken by ambulance to S John's Hospice yesterday afternoon, his condition having deteriorated to such point where it was impossible for him to be nursed at home.

He looked peaceful when I saw him last night, but it is obvious that his life is now drawing to a close.

For whom the bell tolls . . . .

It tolls for me! Have placed my old school bell next to Stephen's bed so he can ring when he needs me.

Doctor called yesterday morning - to check the infection in Stephen's foot - prescribed antibiotics. Apparently it is dangerous if the infection gets under the skin - spreads to his legs - could set up diabetes. The oedema has now spread up the legs to his stomach, which is vastly distended. He is also experienced pain for the first time when doctor gently pressed the liver.

Doctor took me aside - explained the situation and what to expect over the next week or two (not months). Discussed end-of-life care and whether I could cope with him at home over the following weeks. A special pack is to be ordered - to be kept at home for the medics to use as Stephen deteriorates, when he may, or may not - depending on how he feels - be transferred to the Hospice.

Stephen remained in bed all day - ringing the bell, as necessary.

However, in the evening, as I was sitting trying to relax - doing a bit of mindless knitting and watching women giving birth on TV (will opt for a caesarian next time) - the bell rang furiously. I panicked - ran upstairs to find a very cheerful Stephen sitting up in bed doing the Times crossword and requesting a second glass of Wisniowka (Polish cherry vodka to the uniniated).

I think you could say we are on a rollercoaster!

Another grim day . . .

Another grim day. Stephen has an infection in his foot, which looks nasty and could spread to his leg if not treated. Parts of his legs are weeping already. Chiropodist coming at tea-time.

Oedema nurse arrived this afternoon - not much she could do - apart from showing me how to massage his legs. Says it is due to problems much higher up. She is going to see Stephen again on Thursday at the Hospice when we see Professor MB and the hospice team, including social services, for a complete review of Stephen's situation.

My chiropodist phoned whilst nurse was here - so it was useful for them to have an exchange re possible medication and treatment for Stephen's foot.

The chiropodist is super. Highly qualified and the best in the town if not the county. I've been treated by a few chiropodist/podiatrists but NB beats them all. She dressed his foot - said it was a bacterial infection and asked me to call the GP for a prescription, but Doctor said he wanted to see Stephen himself and will call here tomorrow. For which I'm thankful.

Stephen has spent an uncomfortable day - angry and stressed - made worse by collapsing in a heap on the stairs this evening. We spent an hour struggling to get him up the stairs - out of breath with every step he took. We are supposed to be having a stairlift installed - so I will be ringing the firm in the morning to get them moving. We can't go on like this.

Stephen was extremely distressed and weepy when I finally got him into his bed.

Morphine will help him sleep for a few hours.

NB: I trust any heavy smokers or drinkers out there are taking heed of this situation.

This could quite easily be you . . .

Exhaustion . . .

A terrible weekend. Oedema nurse did not turn up. Phoned at 5.3o pm Friday evening to apologise. Hopes to call tomorrow. Meanwhile it's a case of DIY, legs up and home massage.

Weekends are not the time to be ill or needy.

Have arranged for my chiropodist to visit and attend to Stephen's swollen feet tomorrow evening in the hope it will make them more comfortable. He cannot wear shoes now - only soft granny slippers with velcro fastenings, which he hates.

Stephen was very angry and bitter this weekend - and as I am the only one here - got full blast of his feelings. It is not easy being on the receiving end of such ranting and I am becoming exhausted. Stephen can no longer walk properly and he either remains in bed or sits in an armchair whilst I run around like a scalded cockerel seeing to all his needs - not to mention cooking and housework.

He has now become quite demanding with everything and everyone. Is determined to survive. Seems a dreadful thing to say but, having given 13 months of my life to his constant care, I am afraid that my own health may be compromised which will do neither of us any good.

Not a good day . . .

Stephen had a bad day yesterday, followed by a very bad night.

Our local pharmacist turned up on the doorstep during the evening - with morphine - prescribed by our GP and faxed to the pharmacy. There's not many who would take the trouble to do that and we were especially grateful for his thoughtfulness. The medicine proved invaluable during the night.

Stephen had difficulty moving this morning - so remained in bed for the whole day and slept most of the time.

He is now wide awake - it's 1 a.m - and I've gently massaged his legs, changed his nightwear for the 3rd time - was damp with sweat - and plumped up the pillows.

Made Stephen some food and a warm drink but he asked for a thimbleful of Polish cherry vodka to warm his tum before he settles down again. Doc says there's nothing to lose by having the odd glass of wine or whatever at this stage if it gives Stephen some comfort, so I brought him a liqueur glass half full of Wisniowka, which he thoroughly enjoyed.

The district nurse is calling here tomorrow morning to keep an eye on Stephen, and I shall be very glad indeed to see the oedema nurse who is coming to treat his legs - and show me what to do.

The Outreach nurse rang this morning to see if I needed some 'respite' - i.e. go shopping whilst a nurse sits with Stephen. This could prove a valuable aid and I shall take advantage of every kind of help available when I need it, 'cos I'm slowly getting v tired.

Swollen legs . . . and panic . . .

Stephen panicked last night - the first time since he was taken ill. He is usually very positive, but last night his legs were playing him up - felt heavy and tight, and were weeping in places. They had swelled up considerably during the day in spite of frusemide (water tablets) - elastic stockings, massage and having his legs well supported above body level.

He cannot wear shoes and resorts to large old-fashioned slippers with felcro fastenings, as his feet are swollen out of all recognition.

Stephen shouted and raged against the illness for half the night - which I have now learned to ignore. I feel dreadfully sorry for him but realise he needs an outlet to get rid of the angst and bitterness. It' s difficult at times, but am determined not to play the martyr, and aim to be as loving and helpful as possible, given the cirumstances.

I rang the 'oedema' nurse at the hospice this morning and she will be in touch this afternoon.

I am hoping she will show me what to do as I don't think my massage techniques are helping the problem. I'm a bit 'rough' - which is OK for breadmaking - kneading dough - but not appropriate for a patient with very tender swollen legs.

NB: If you smoke or drink heavily I suggest you stop immediately. The information I give on this blog is only half the tale. Your future, and that of your family, will NOT be bright!

Home from the Hospice . . .

Stephen wanted to come home so I collected him from the hospice late this afternoon - since when he slept, but woke at 9 o clock wanting sponge pudding and custard, which I duly made for him. Luckily I had made a big welcome home marmalade cake, using some of the marmalade I made on Sunday. Warmed it up and made some custard - so it was no big deal. He enjoyed it and ate the lot!

He's tucked up in bed which I made extra comfortable by putting 2 duvets on top of the mattress. He is getting very thin and bony - so the extra cushioning will hopefully prevent bed sores developing. Tight elastic stockings to help reduce the swelling in his legs are worn during the day, and his legs have to be massaged (upwards) every morning.

Stephen was measured for a stairlift this morning - which should make life a bit easier as he has great difficulty crawling up the stairs and is determined not to have a bed downstairs. Feels that is below his dignity and the last straw.

I feel tired myself after running around all evening seeing to things - making sure he is comfortable. The doctor says Stephen can be admitted to the hospice at any time - but Stephen feels he wants to spend time at home - which I understand - but just hope my energy holds out. There is only me here to see to everything, whereas there were helpers, cleaners, nurses, doctors seeing to all his needs in the hospice, and alas I am no longer a 'Spring Chicken' but more like an 'Old Boiler!'

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!