More Mist Ahead

First a puzzle for you:

Some hard places to be in - please re-arrange the following in the order you feel most appropriate - softest place to hardest!

NB This is meant to be light hearted - visits and conversations are wonderful for me and this is not a criticism of anyone in particular - more a gentle review of different situations - a gentle poke of humour - I have not had the situation of the visitor who came to see a patient of mine 10 years ago. The poor patient was dying from cancer. The visitor settled himself in a chair in the corner and spoke for 60 minutes about his personal pile problems and then left....!

• Visitors who overstay when you are tired
• Not having to go clothes shopping when you are "terminally ill"
• Being captive in a trivial conversation with long term plans for the future - when yours is probably pretty short
• Singing a hymn that expects you to smile and be happy - about dying
  
• Friends who tell you you have never looked better when you can not remember feeling sorer
• No need to fill in a tax form this year!
  
• Realising you are doing a favourite thing - for probably the last time
• Realising you have probably run out of time to do something you promised to do
• Really enjoying a trip that you have have never been able to do but suddenly get the opportunity for - eg a rail trip to Thurso on the northern tip of the scottish mainland by train, past frozen lakes, sunbathing seals and snow capped hills. The snap shots below do not do the experience justice - It was fantastic!
  

The angel and I went to the see the oncologist today in the first part of a long "NHS" day - of which more later.

We looked at scan results, my blood tests and my recent history and all of us agreed that while the cisplatinum had done a lot of good in the first 5 cycles, the disease is now progressing, my liver is inflammed and more chemotherapy would be poisonous and dangerous for me and my liver rather than helpful and safe.

It is 4 weeks since my last treatment and most of my symptoms are controlled most of the time; so we are going to stick with small necessary changes to current treaments of symptoms rather than embark on other, potentially dangerous, life-threatening chemotherapy.

The misty prospect that now lies ahead is unclear and we have lots of friends who are helping us through in all sorts of ways that we find humbling and encouraging - thank you for your support in visits, prayer, thoughts and interest.

After our visit to the first hospital (or some call it the second) we then went 35 miles to meet up at the helpful low vision clinic with my father at the DGH where MS had kindly taken him for his follow-up check to try and improve his stroke damaged eyesight. We came away in the spring afternoon sunlight laden with ideas on lines, along with loans of lenses and lamps, promises of prisms and more support and leaving behind a slightly dumbstruck orthoptist who was visibly wrong footed by the 90 year gentleman who gently asked her if she had any low vision aids that would help him with his computing...

We had left home at 0900, been to 2 hospitals, got home at 1800, travelled 140 miles round trip, had two serious conditions cared for and received expert appropriate advice. All without discrimination or favour.

Viva la NHS.

Our society has a valuable heritage of care that is Christian and worthy of replication - and we are very thankful for it. How can a country like the USA dither over caring for its people so?

A few months ago I said we were happy with oncology and prayer together. Oncology has done a lot of good. We are thanking God for answers to prayer now.

More from the Mist and Why?

Since I last wrote, more events have loomed out of the mist - some good, some not so welcome and some of uncertain portent.... fellow travellers have been so supportive and given help at every stage. Thanks again.

An excursion for two nights last week to the local district general hospital helped to settle an unwanted episode of vomiting and tummy upset; a CT scan provided reassuring evidence of little change in the cancer's size and the excursion ended with my coming home with 2 units of donated blood on board, improved ankle swelling, reduced medication and improved colour! It all meant a lot of travelling for the angel and others as well as increased pressure all around - now it is much better being home, with plans for the future in abeyance....

One big uncertainty is whether I am to continue with chemotherapy after the current cycle of treatment planned for the next two weeks..... we await the specialists' advice which will influence plans for the next few weeks in all sorts of ways.

And the days themselves are changing fast - brighter and longer even though they remain disappointingly cold and snowy and the cold gets to one's bones and makes aches and pains worse. Not being at work this year gives me time to notice the inexorable changes of Spring. Snowdrops burst into flower, crocuses into bud, rising larks larks sing louder. The power that drives these different and not always silent events is noiseless itself. We do not hear the "music of the spheres and planets" but we see and feel the results ..... the changing light and warmth drive so much - not least the musings of theists, agnostics and atheists alike.

The silent, predictable orbits of planet round sun, or moon round earth, at great speed over vast distances, produce remarkably beautiful but almost constant annual and monthly change that power our world through its cycles. Silent processes that generate so much energy and beauty are analysed by the physicist or photographer, mathematician or musician, geologist or theologian, artist or meteorologist, historian or me or you from all sorts of different and satisfying perspectives.

"Why and How" have different and valid answers for each.

Can you make time to listen for the music of the spheres and watch for their results?

More Unavoidable Education

It's not often one sees dramatic, life changing events unfold before one's eyes but that has been the latest instalment in my "unavoidable education."

Last week while I was visiting my father for a cup of coffee he suddenly said he had lost his sight, began peering blindly around looking for me, and developed a headache. Instinctively as the anxious son and doctor, I felt his pulse - it was alarmingly slow and irregular, though it began to it began to improve along with his other symptoms after a while..!
When his own doctor called everything seemed to improve for a while, but then later relapsed. To my relief, he was in hospital by the end of the day - apparently having has a small stroke that had affected only his vision on the left hand side. Thankfully, speech, coordination, movement and consciousness remained (and remain) unaffected.

Once again the NHS has cared for him wonderfully with admission to a hospital with a stroke unit, thoughtful specialist assessment of his disability, advice and followup. Now he is home again .... with residual visual disability that is going to take some getting used to and will hopefully improve. He is cheerful, pleased to be independent again, and, despite being widowed and living alone, he manages well and is very mobile on his "peg leg" of 3 years (his words) - he has lots to teach many of us about handling adversity!

Doctors don't often get an opportunity to watch an evolving pathological human drama (like a stroke or heart attack) from beginning to end and to witness nature's checks and balances swing into action to acutely compensate for the rapidly occuring changes . These are in many ways ahead of medical science and therapy because they happen so fast. Subsequent tests showed no heart damage so we can only speculate what was going on as his heart slowed and then speeded up again, his headache came and went and his vision cleared from complete loss to only affecting the left side. Tests showed only a clot in the "seeing part" of his brain with resultant local damage. Now it is healing symptomatically as the body, which dealt with the crisis, turns to mending, adapting and compensating to get back to as near normal function as possible.

We are indeed "fearfully and wonderfully made" - his treatment is evidence of a successful partnership between science based medical care and a carefully balanced creation that maintains such a stable environment inside the human body.

What will come next out of the mist? We wait and see...

Side effects o' chemo'

Some notes for prescribers and receivers!!

Using Gemcitabine and Cisplatinum

These are comments and notes that I have made solely from personal experience and the information available from the macmillan website -

I have been on a three weekly regime of cisplatinum and gemcitabine (Gem CisPlat) given intravenously on days 1 and 8 in a 28 day cycle along with a very effective antisickness regime that starts intravenously in hospital and continues from days 1-3 at home with tablets

Chemotherapy regime - Cisplatin and gemcitabine (GemCisPlat) days 1 and 8 in a 21 day cycle

The Anti nausea regime with granisetron, dexamethasone and domperidone has been very effective!

I understand that side effects may increase with the number of cycle completed, but they have not been a major problem for me after 4 cycles (started in October 2009)

- this information is drawn from personal experience, advice I have been given and reading information from the useful pages on gemcisplat on the macmillan cancer support website.

The medication damages liver cells during treatment and makes them inflammed and swollen so you may be jaundiced and look and feel worsea before getting better.

If you are receiving treatment as a day patient, the regiome is complicated and takes time so allow at least Five and a half hour infusion time in total for intravenous treatment. This allows time for you to receive extra fluids to help your kidneys, the anti sickness treatment and then chemotherapy itself.

Below are some of the side effects that have occurred for me – none have been serious

1. Painful vein during the infusion – This does not happen every time.

If it does occur, tell someone - a warm cushion gives great relief and allows the infusion to continue more slowly and painlessly.

2. Slight dizziness - during the intravenous antisickness treatment with IV dexamethasone - it passes
3. Tiredness on day 1 evening - comes on suddenly after 3-5 hours – lasts until the next morning and intermittently at times for 2-3 days
   
4. Liver pain on day 1 evening - aches at sites of the liver tumours – a sign of “let battle commence!” It continues intermittently for a few days, is eased by usual analgesia

5. Swollen ankles - on day 2 and 3 only, painless and slight

6. Dry Skin - From day 2 onwards to day 15 – helped by aqueous cream as soap and emollient

7. Skin hacks - On fingers and heels helped by cortisone cream and emollients

8. Temperature rise - In my first two cycles on day 5 – stopped by antibiotic cover
9. Constipation - starts on day 2 and increases over 4 days - managed with movicol sachetts and roughage
10. Dark urine - despite drinking lots of fluids by day and night, urine colour changes a lot between days 2-15. My blood tests have been OK so presumably the changes reflect the powerful effects of the chemotherapy on the liver and cancer cells.
11. Taste - An odd dry metallic taste before meals is associated with the need for a bowel movement - it is often eased by passing wind or stool - useful for taste improvement before a meal...! It is also helped by diluted lime juice and by Benzydamine (Difflam) mouthwash at night. It seems to be to do with the vagus nerve and its effects on bowel activity alongside its role in taste sensation in the mouth and rear part of the tongue.
    
12. Hair - It almost stopped growing after the first treatment dose and is still very slow.

13. Hearing - It is slightly diminished though I had some tinnitus before treatment started.

So, for me at least, the benfits have far outweighed the harms of the treatment. The ill effects have been inconveniences and the benefits have been slowed (if not stopped) tumour growth along with control of symptoms of pain and extended life span. If you are in the situation I am in, stick with it - it is worth it.

The treatment is based on the results of the Advanced Biliary Cancer Trial 02 carried out in the UK and published in 2009.

John Gilpin's Ride...or not

Lots of post Christmas cheer:

• The CT scan result is very encouraging - it shows no significant tumour growth in the liver or gall bladder, nor any spread elsewhere between scans of 5.10.09 and 29.12.09.
• No snow to battle with this week
• Life gets back to a more normal routine

A bit like John Gilpin's horse, the disease seems to have come to a halt with treatment. Just like his horse, we cannot be sure what will happen next. The angel and I see the result as a very positive confirmation of what we felt was happening anyway and we will carry on as before with treatment as offered.

Oncology and prayer are a mixture to be thankful for.

I am kept busy with various projects as energy levels vary - I have been lent loads of books to read from fiction through GP's memoires, climate change, bird books and Civil war histories to treatises on Guns, War and Votes, then there has been time for rebuilding the practice website, small DIY projects around the house and then perhaps, when things warm up and energy allows, we can get outside again....
As the days lengthen again, it will be time for some more walking and cycling we hope. The bulbs inside the house (not the electric ones!) are popping in to bloom so the ones outside will not be far behind and then we will be racing into Spring - with a bit more control than John Gilpin had of his mare, we hope!

He should have employed a locum in the first place....

The Less Than Usual Chemo Expedition

This week’s expedition for therapy was somewhat eventful.

The town was finally caught in the grip of the “big freeze” with heavy snowfalls on Tuesday and Wednesday afternoons that almost cut us off. It became obvious to the angel and I that a 7am start on Thursday morning in the cold, frozen, snowy dark for a 50 mile road trip to hospital would be foolhardy and unwise.
So, on Wednesday afternoon, a kind friend drove me to the station in her 4x4 on the snow over an almost impassable A1.
After a long, cold wait for a delayed train, I reached the big city. Normality seemed to return as I was met by son D - there was hardly any snow on the bitterly cold, crowded streets or pavements, lots of people were around the rush hour city and Christmas lights still hanging looked very attractive. The snow-filled, quiet and empty streets of home seemed to be on a different planet!

Next morning was still very cold (-2C) but clear with sunshine though the angel said on the phone it was still snowing at home. I was easily at the hospital by 9am and started the 5 and a half hour routine for the IV treatment at 9.30 as blood tests were satisfactory – The oncology unit is so efficient and cheerful, it now seems more like a club or a hairdressers with regulars and new comers mixing well at levels they are comfortable with. I feel more of an old hand now - not the new boy I was in October.
However by 2pm, reports of more snow on the A1 made it sensible to change my normal road-based plans and return home by train. So, after a kind lift to the station at 4pm (an easy, dry drive under clear blue skies along streets clear of snow), I had another wait as trains were running up to 80mins late or cancelled. Cold rather than snow were causing problems elsewhere in Scotland.
Eventually, the “late running 17.30” crept out of the city at 1750 into the darkness bound for London, and into the deeper snows of the country side, – of which one could just catch glimpses in the stretch of track illuminated by the light from the carriage window as we rushed along. Snow was falling heavily as I alighted on to 40+cms of snow on the station platform at 1830 to be met by a long suffering friend who drove me home. He stayed for supper but declined a bed for the night in favour of his woodland caravan.
We had stopped to help push a wallowing car driver on the station brae and marvelled at some people’s lack of snow driving experience as the newly released car stopped again (!) on the hill to pick up a passenger – and stuck again...

...Two days later it is still snowing intermittently and many roads in the town remain impassable, cars are stuck in garages and, though the rest of the country seems to be more mobile, this little corner of it is still getting snow - road travel is only advised for emergencies. The angel is out delivering prescriptions this morning and neighbours are helping each other with clearing paths and pavements.

Recuperation post chemo for the last few days has been as usual with some nausea and tummy ache as the medicine does its routine, gets to where it’s supposed to be and does its poisonous work on the nasty cells. There's good evidence of cell destruction in dark urine and liver ache. It is all very manageable, but it rather limits snow clearing activities and causes some frustration...

No CT scan result was available on Thursday but the liver blood tests show a 20% improvement on the same part of the cycle 3 weeks ago – this can’t be bad news... another thing to be thankful for...hooray...!

CT results at next weeks's appointment..

Mists of Time

In October, I became a new member of an exclusive, totally informal, slightly secretive, local club - there's no membership fee but we each know through the grape vine who most of the other members are. Small town gossip is probably what introduced us to each other. We are all at different stages of living with cancer and getting palliative treatment in some form - some have chemotherapy, some surgery, some 'best supportive care'. There's an unspoken sharing when we meet of how we are all living with an uncertain future, but we are all seen to be positive - smiles, hugs and encouragement - even in the High Street!

How does one approach the future at "this time of the year"?

The angel and I see ourselves walking into a mist or a cloud - a whiteness that retreats as we move through it across stepping stones. Various things come out of the mist as we progress. Firstly, there are regular markers - expected and routine like the days of the next week, chemotherapy dates and appointments, visits and expeditions. Others are more special and irregular. At first some seemed too far off in the mist to hope or plan for but have now appeared, been relished and enjoyed and now live behind us in happy memories - a family weekend away in Peebles in November, regular long distance visitors, the practice party (last week), Christmas (this week). Some things materialise and then lurch completely unexpectedly out of the whiteness (like the operation!).

Looking back at the original, untreated prognosis of 2-4 months in early October, we are so fortunate and have come a long way with lots of help and encouragement. Now new mile markers are being talked about - further away in the mist - we don't see them all so clearly yet, though others do and we share their excitement :-

• a CT scan in late December to help the oncologist decide if further treatment is appropriate
  
• more treatment or abandon it - to be decided in early January
  
• back to part time work in the Spring
• in longer days, a weekend away to see countryside in the Spring
  
• a wedding in May in Surrey
  
• a special baby in June
  
• new jobs in August
  

For us they remain less definable and still enshrouded in the mist ahead - good to talk about and great to look forward to.

Is the mist frightening? I don't think it has to be. Like parts of long distance running, perhaps the important part of the process is to keep concentrating on what can be achieved now, dealing with it in small chunks, staying focussed on the steps, the stepping stones, the passing mile markers, and enjoying the companions one is blessed with.

It certainly doesn't help to let thoughts run riot and out of control - there may be "nasties" in the mist but thinking about what they might be like will only steal something precious from the present - so it is not a healthy pastime!

In the meantime, the walk through the mist is going ok. The view behind is wonderful, the company is superb, the encouragement from all sorts of directions is immensely helpful and the treatment is working.