Wednesday, October 31, 2007


27th October. A walk at Littlehampton again.

Last saturday, after the car boot sale at Ford, we had a stroll at Littlehampton once again.
The River Arun flows into the sea at Littlehampton.
Last week we were by the same river at Arundel - under the castle.
Last Saturday it looked like the sea was flowing into the river. The tide was coming in and the water flows very fast - one of the fastest flowing estuaries in the country.
It is hard to capture the fast flowing swirling water - but I tried.

Despite the incoming tide, sailing boats were making their way out to the open sea.

We watched starlings taking advantage of some spilled ice cream.
Then the birds came over and cocked their heads and hoped that we might throw down some morsels from the bag of chips we were eating.
Of course we did.

The Arun estuary has been home to a flock of swans for very many years.
They also always hopeful for food - but we had no stale bread with us.
Their feathers are so soft and beautiful.

Seagulls have to find their own food. There were lots of fish for them close to the beach on the tide.


31st October. Looking back over health issues.

31st October 2007. I like to keep a diary for both the trivial and major things in life.
I have stored this introductory ramble about my health problems else where and have printed off to paste in to a book I have to use in hospital.
It is rather long - of course you are welcome to share it - but it is mainly to keep things straight in my mind.
I might add things that I write when I am in the hospital after I get home.

I am not my bladder!
The bladder which I still have is just a small part of my body and doesn’t influence who I am. I am the sum total of 63 years of experience – a being that has evolved through different stages of life to the person I am today. I plan to allow my character and expectations to evolve much more over many more years.
That is what I really hope for.
But for the last 20 months my bladder had been a part of the experiences that shape who I am.
Only 20 months – it sometimes seems like it has been much longer.
There were a few days at the beginning of March 2006 when I had pain – excruciating pain for a few seconds each time I wee-ed – and I assumed I had a bout of cystitis. “Bother” I thought – I didn’t need any thing to impair my life at that moment because we were due to fly to Thailand for a holiday with Jamie and his family. So I called at the local pharmacy and bought a bottle of foul tasting potassium citrate; it had worked for me many years ago when I had a similar problem. And it seemed to work for me again. I had no troubles whilst we were away.
It flared up again in May. This time I thought I should check things out with a doctor. I chatted to a very pleasant locum doctor on the phone – I remember he phoned me on a Tuesday whilst I was in Rocking Horse. He agreed I would want to be treated as soon as possible and he said a prescription would be left out for me that day for an antibiotic. I had been pleased that it could all be sorted so easily.
And for a while it did appear to be sorted – then it flared up again. I saw Dr Oliver and he prescribed another lot of antibiotics.
But when I had to see him again I had to take a urine sample to be tested for infection and this showed that there was no infection. Dr Oliver immediately arranged for me to see one of the urology team at the hospital. I wonder if he suspected then what was wrong with me.
My appointment at Crawley hospital in September 2006 told me very little except that after an ultrasound scan I would have to have a flexible cystoscopy. The wait for the CT scan is the only thing in the last 20 months that I have been disappointed by. I waited, with flare ups of the problem, for about 12 weeks and then a few days later I had the flexible cystoscopy which is done with a local anaesthetic. It was uncomfortable but not too much of a problem. It was Mr Mohammed who did the procedure and all he would tell me at that stage was that he could see some very “raw” patches within the bladder. He was gentle and charming. I suspect he knew for sure on that day what was wrong with me.
The next stage was to have a rigid cystoscopy under general anaesthetic and samples taken for biopsy tests. When I went to Buckland Ward at The East Surrey Hospital for the pre operation assessments I was treated very well – with kid gloves it felt to me – and I knew then that they were treating me as somebody with a serious problem. I have learned over the years how to interpret medical people!
The first cystoscopy was on a Friday in January. I was admitted on the morning of the day of the small operation – after waiting at home for a few hours to see if there was actually going to be a bed free for me. I stayed in overnight with a painful catheter in. The following morning I enjoyed good conversation with the woman in the next bed and then left after lunch.
It takes about 3 weeks for the tissue samples to be treated, tested and medical conferences about me to be arranged. Then I returned to out patients to have the situation explained to me. Whilst waiting we talked with Mr and Mrs Sayers, Bill’s next door neighbours from Ginhams Road where the Monk family lived. Den was describing his treatment to us – chemicals and bleach figured in the conversation. I saw a fairly junior doctor who told me I have CIS – carcinoma in situ. He didn’t use the word cancer at first but I explained to him that I have had a lot of experience of this disease and I know the various medical teminologies. He told me that this cancer was, at that moment, confined to the surface of the inside of the bladder and should be cleared by a course of BCG – and then I got the complete picture of the chemicals and bleach that Den was telling us about. They wanted to start straight away – but I argued against that – my ticket to Thailand was booked for the next week and I was determined to go.
I saw Catherine, the urology specialist nurse (also a MacMillan nurse) and we sorted out when the course of 6 treatments could be and what it would all involve.
I had not been surprised by the diagnosis – I think I had known for some time. Nevertheless such a diagnosis can still hit quite hard and I felt rather numb.
But a week later I was flying (without Bill) to Thailand for what seemed to me to be a very precious 2 weeks. In quiet moments I did think about the future, but mostly I felt really well. There was just one night with quite bad pains which shook me up rather.
On March 16th the treatment began. Each time I had the treatment it was administered very much on time and in a kindly manner by Catherine or Adele, the other specialist urology nurse. I quickly got accustomed to the idea that a tiny catheter would be inserted and a sachet of liquid BCG emptied through it directly into the bladder. Perhaps the most difficult part was not weeing for 2 hours! By this time were at home of course and a bowlful of bleach was at the ready to empty into the loo each time I went for the next 8 hours.
There were very few side effects of the treatment – sometimes during the 6 weeks I did feel very tired.
Looking back I have half a feeling that I didn’t trust this treatment. I had been used to a chemotherapy that damn well caused a lot of problems. How could this BCG be killing the cancer if it was so trouble free? Did my reluctance to believe it was working affect the fact that it didn’t work?
I completed the course of treatment and another date was fixed for a general anaesthetic and another cystoscopy. This is the only way that the medical team can assess if the treatment has been effective. So on another Friday I was there to be wheeled down to the operating theatre. Bill collected me the following morning.
There was just one strange moment between then and my next appointment. I was at the hospital to visit a sick friend. Just as I was about to turn into her ward I bumped into Catherine, my specialist nurse. Poor thing couldn’t quite conceal her shock at seeing me. The look on her face suggested she knew more than she was able to let on to me there in the corridor. She confirmed later that she had just that moment walked out of the medical conference discussing my case – so, still thinking about me, had been so surprised to see me there.
And a few days later we were back in outpatients for the result, which Catherine had already known that day in the corridor. I was still getting pain when I wee-ed and sometimes for quite long stretches of time which I found difficult to endure. This seemed to suggest to me that I still had the problem – and when I saw the top man, Mr Swinn, I found this to be true.
Again my ability to read situations told me before I went in to see him what would be said. I sat with Bill and told him that if I was called to see Mr Swinn rather than any of his underlings I would know what the diagnosis was – a belief strengthened when I noticed that Catherine was with Mr Swinn.
Mr Swinn was very pleasant and suggested that I have another course of the BCG treatment. He assured me that about half of the people who require a second course respond to further treatment. He did tell me that in America they do not offer a second course but decide to remove the bladder straight away – which was his way of telling me what the next course of action would be. Anyway I took their advice and dates were fixed during July for the BCG and bleach routine again. This finished on the first Friday in August whilst Ashley and Ekatarina were staying with us, but apart from that day the treatment was not interfering with life very much.
And so it was that for the third time this year I was back for a rigid cystoscopy to check what had been happening to my bladder. I was pretty sure that I knew that yet again the treatment hadn’t worked – I was still getting pain. I told the medical team what I felt I knew but they would commit themselves to nothing until the biopsy results were in. After the operation the surgeon did say that he had seen more “raw” patches – that meaningless word again that I had heard last December. He wouldn’t say any more whilst I was in the recovery ward. Later he did come to see me and he gently laid a hand on mine and said that it was 50/50. That was all – but I knew he had actually done his best to confirm my own thoughts. I inwardly thanked him for that.
I went home the same evening – probably shouldn’t have because the anaesthetic had left me feeling really queasy. It was just as well I grabbed a bowl from the ward before I left because I was actually sick in the car on the journey home.
Then I had to endure the long wait – well, 3 weeks, feeling sure what would be the next thing on my agenda.
I saw Mr Swinn again on September 25th and of course, as we all know, he confirmed that the BCG had not been effective again. He mumbled something about further courses of treatment but then said that of course another option would be to remove the bladder. I nodded so vehemently that he realised that breaking this “bad news” to me would not be a traumatic problem for him. There actually had been no option for more BCG – this was just his lead in to the bad news.
He explained it all very carefully – how it would be done, how long it would take etc. As the law demands the mortality rate was discussed – death is always a small possibility after an anaesthetic. His comment that “statistically I am bound to lose somebody one day” made us laugh!
He was apologetic that there would have to be a slight delay – he had arranged to take his family to visit his brother in Atlanta during half term. He wanted to wait until after that so that he would be available for all my follow up.
Last week I was back at the hospital for all the pre op tests and to see specialist nurses (Adele and Julie, the stoma nurse).
I have now seen a “wee” bag – just a bit larger than I imagined. Julie explained the mechanics of fitting a bag – and then emptying it. I realise that most of my learning will be by doing – first with her guidance and then on my own.
I was impressed last week by just how much the team had already decided for me and put into place.
I shall be in the operating theatre for 5 to 6 hours. In that time a portion of my small intestine about 15 inches long will be taken and used to make a drain from the kidneys to the stoma in my side where the bag will be fixed.
Some people may be able to have a substitute bladder created from bowel – but I have already lost a lot of that and don’t have enough left.
There will also be checking of other closely related areas.
I feel reassured that they will keep me completely informed of everything in good time so that I can deal with events and changes and feel in control of myself as far as is possible.
I am glad that pain management has been sorted – an epidural at first and then a driver controlled by me. I am happy that for the first day or so there will be concentrated nursing for me in intensive care. Julie, the stoma nurse will see me every day in the hospital and then will visit me at home.
Of course I am not glad that all this has to happen. There are times when I feel so well and so busy that when thoughts of the hospital drift into my head, which they do rather a lot, I start to feel that maybe it is all a big mistake and I can go back to where I was.
But hospitals do not usually make mistakes about spending thousands of pounds on a patient. Mr Swinn and the team are good and know what that they are doing.
This operation and the change to my urinary system is completely necessary and my only hope for a cure.
The truth really is that I have no choice. If left unattended my bladder, which is not in any way the sum total of me, would in fact be the cause of the end of me.
I would far rather cope with the major surgery that is to come, the convalescence and learning about my wee bag than the alternative which in a nutshell would be a long slow and painful demise.
So, today is my last full day at home. Tomorrow I shall phone the hospital in the morning and would arrive at the ward about 1 o’clock. It all feels very unreal just now.


25th October Joel and Anna

Joel and Anna are my nephew and niece - strictly "half" nephew and niece.
They are the children of Matt and Suzie - Matt is my half brother. He is just a few months younger than Ashley.
Joel and Anna are bright and lively and full of fun.

They enjoyed eating their frankfurter sausages - after using them to look comical.

Anna stroking George the cat.

Monday, October 29, 2007


20th October A walk at Arundel.

On Saturday 20th October we called in at Arundel after the car boot sale at Ford.
We had a walk round the bottom of the town, admiring the items for sale at the farmer's market.
I bought 1Kg of salt licorice sweets in the old fashioned sweet shop.

We sat by the river and enjoyed a snack from The Riverside Cafe.
Bill is posing just in front of the table we had. It felt warm and sheltered there.

We took a walk below the castle and along a path we had not taken before across the water meadows to the river.

The castle stands above the town and river and is very impressive - built during the 19th century on a site of an earlier castle that may well have seen battle.


Cows in the meadow below the castle.

Cow parsley silhouette.

In this wide view shot you can see the Roman Catholic cathedral to the left of the castle.

The River Arun flowing down to the sea at Littlehampton. This view is up river to the South Downs - the river flows through a gap in the hills at Amberley.

Bill by the river.
The last little building on the left by the river is The Riverside Cafe where we started our walk.


18th October Brief visit to Tilgate Nature Centure.

After our walk in the woods at Tilgate, we went to the nature centre for a very brief visit.
The nature centre covers quite a large area and there are many things to see and study.
The centure concentrates on rare breeds and endangered species.
There is no admission charge, but collection boxes are at the entrance for those wishing to make a donation.

Friday, October 26, 2007


18th October Paula's Autumn photographs at Tilgate

Lat week we enjoyed a lovely walk at Tilgate Park.
There were blue skies, bright sunshine and glorious Autumn colours.

I can't stress enough how lucky we are to have this amenity so close to home - acres of woodland and lakes for people to explore, provided by the local council.
There is also the nature centre - which we visited briefly. I shall put some nature centre pictures on the next blog posting.

Just for a change I have split the photos into 2 blog postings. First you can scroll down mine and then move on to see Bill's.

Fallen leaves on a pathway in the heather garden.

Beech leaves just turning from green to gold.

Leaves turning from green to red.

Golden leaves and blue sky - and aircraft trails.

Red berries against golden leaves.

The smaller trees turn golden first - here is one set against the larger, still green, trees.

Golden leaves in the sunshine.

Leaves at different stages - green with red which will soon turn yellow and gold.

Small tree with now red leaves and the large lake in the background.

Fallen red leaves on the green grass.

The monkey puzzle tree

Brown leaves, soon to fall and be crunchy under our footsteps.

Lovely red leaves hanging over a wall.

Green, yellow and red.


18th October Bill's Autumn photographs at Tilgate

Here is a selection of Bill's photographs taken on our Autumn walk in Tilgate Park on 18th October.

Path through the woods.

Red leaves in the heather garden.

Tilgate Park view.

Autumn seeds.

One lone rhododendron still blooming in the autumn sunshine.

Winter cyclamens at the foot of a tree.

Holly berries.

Fir cones and blue sky.

Squirrel gathering autumn nuts.

Squirrel in the tree.

Stunning red leaf.

◄  Older Posts      Top of the Page  ▲