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.

Support

Phone, email, verbal messages, cards, letters, flowers, chat on the street, promises of prayer, specific actions - the list is endless, generous, humbling and, well.... supportive!

The angel and I (along with the rest of the family) have felt supported in all these ways to an extent we could not have imagined before - from near and far, from people we know, and from people we have never heard of before, we have been offered, promised and received support.

How it can be measured, I don't know, but it is invaluable.

But then one hears Bob Dylan sing,

"How does it feel to be on your own?

How does it feel to be without a home,
just a complete unknown,
like a rolling stone
with no direction shown,
just like a rolling stone....How must it feel?"

It must feel truely awful, because having such wonderful support as we have makes one appreciate all sorts of things on different levels, but most specially - being accompanied.

Company is precious in all stages of life and whatever one believes.
For us to be reminded by your support, that we are indeed not alone, is very precious indeed.

It is also special to know that whatever kind of physical, emotional or spiritual valley lies ahead in the next months or years, we need not be alone. However we feel - nothing can separate any of us from God's love and his promises to be with us are true, not just for now but for the future too. He is part of the care and company now through your support for us.

One last thought:

Should "You'll never walk alone" be ammended to "You need never walk alone"?

Thank you everyone for being supportive of each of us in your own special way. It is deeply appreciated..

I am a fan of oncology and prayer

Holy Island, or Lindisfarne,
(http://www.lindisfarne.org.uk/)
holds a special peaceful attraction for us and, as the angel was on holiday this last week, we promised ourselves a day there for peace and quiet if the weather held. Some find it is a “thin place” where the gap between the physical and the spiritual is especially narrow - hence its Celtic Christian heritage. Flat dunes, vast views and wide open spaces, wild birds, tides that ebb and flow and dictate the pace of life – all these go together to make it an especially peaceful place to be at times.

As planned, we arrived at 0945 to watch the tide recede before the tidal causeway became open and easily passable again (due to open at 10.30). There were 40-60mph off-shore winds and a queue of cars and vans with occupants seemingly desperate to get across the still submerged, narrow track of causeway – long before the water fell to safer levels. Risking spoiled engines and wet interiors, there seemed to be no peace in some peoples’ lives as they inched their wheels into the deep water (that was visibly receding) before they rushed to make it to the other side and off to the village centre a few minutes quicker.

We watched the water retreat as expected and, at 10.30, drove across the lonely, sandy, wet, tar strip of road past the empty, brown dunes while, around us, flocks of duck and wading birds wheeled in the high wind and flying spray and spume. Walking round the Priory in the gale, we found the sun was shining through the windows onto the chancel and pews of St Mary’s church and so sat inside for while in the warm light, reading and thinking of the past of this island and its faith – through times of violence from the Vikings, through change and peace - from 635AD until now. All the while the wind whistled round the heavy stone walls and roof hewn by long dead artisans – it was built around 1200.

And then we thought of the church elsewhere in Britain and abroad, of the communities we are part of and the way they are changing and evolving. The pressures from social change due to national and international economics, politics, climate, AIDS, war and human nature drive a spiritual evolution that affects us all. How our communities (secular and Christian) handle the responsibilities the evolution brings will be so important for us and our children’s’ children. It is at present hard to see the evidence of the clear thinking and foresight that is needed to provide the signposts for a clear way ahead. There are some fragile shoots of fresh thought in the secular and Christian press but not a lot of it is joined together enough to make it generate its own momentum yet.

Food for thought and another day away.....

The delay of chemotherapy by 2 weeks seems to have highlighted how much it was working before the break, as a new left liver ache has appeared in the interval – presumably due to a new lump growing near one that shrank in response to the first course. I was able to restart chemotherapy this week (while the angel went shopping) and we shall see how the next few weeks progress with treatment every Thursday on 2 weeks out three. The abdominal wound has healed; I am eating well and getting out for walks.

The evening before, friends kindly specially prayed for my health and healing. There seems to me to be no conflict to have faith in chemicals working and in God directly answering prayer as two valid modes of working on a tumour. Perhaps we tend as individuals to come from one end or the other of the spiritual or mechanistic/scientific spectrum and probably feel least comfortable if we are trying to hold both modalities in our heads at once........ or occupy the centre the ground.

I expect the pain to improve again.

November 2009 - Prayers

In the last six weeks we have been blessed, not just with treatment from the NHS and all the benefit that brings, but with incredible support from so many people, near and far. Friends, family, acquaintances and colleagues have been encouraging us with letters, emails, visits, phone calls and conversations of support - it is hard to appreciate how far and wide the network runs....

Thank you for all the support.

With many of the good wishes have also come promises of prayer.....

Thank you for praying.

Has it worked? Does prayer achieve anything?

Well, here is some feedback from the receiving end!

Results so far:

• Tummy and shoulder pain is better
• The laparotomy wound has healed
  
• A transient temperature and signs of liver infection have responded to treatment at home
• The household is cheerful
• Chemotherapy seeems to be working and restarts next week
• Lots of positive encouragement from people around us

So thank you again for praying.

We are seeing answers and we thank God for them .......

October 2009 - In praise of the NHS .

How does one start the first page – perhaps with some history – or a time line or some background – or a bit of all three... so here goes - into the story of the last 2 months...
What can happen in a month or two is breath-taking when it breaks into a life that seems, if not in a rut, to be rather settled. As we started our summer holiday in the second half of August, I had an aching left shoulder and right hand - tired after several months of work pressure. The healing soft light of the Scottish Highlands beckoned and all would be well. Indeed over the next 2 weeks, My angel's company, together with our special time spent reading, resting, hill walking, cycling and running all worked their usual magic and we recharged our batteries, the aches and pains went and on the last day we walked, cycled and climbed 25 miles to the top of Mount Keen and back to the cottage. We looked and felt 100%.
By 9th September, tummy pains interfered with my normal 3 mile run. At M and G’s wedding dance on the 12th I danced all evening, but was felled with a sore tummy the next day. Two days later I ran a temp of 40oC in a surgery and careful colleagues started me on treatment and took expert advice, arranging for me to see Dr M in Edinburgh on 22nd September by which time I had some aches in my belly and shoulders again and felt more tired. He kindly arranged for an MRI scan of my liver on 30th October to confirm everyone’s suspicions that I had a kind of liver scarring with chronic infection.
Then came October – a full month with roller coaster rides of emotion and information...
2nd October. 07.50am. A phone call from Dr M in Edinburgh asking us to come to meet him later that morning and “discuss the scan results which are not good.”
12.30 After pleasantries, the diagnosis (now more than half feared or expected) is gently broken – probably gall bladder cancer with liver spread. To confirm the diagnosis and then plan what treatment (if any) will help, a CT scan has been arranged for this afternoon and a liver biopsy for Monday morning, then an outpatient appointment in 10 days to discuss those results. Ishbel phones the practice to cancel my evening surgery.
13.15 Togehter meet our son for lunch in the hospital canteen and tell him. He works in RIE liver unit for Dr M at present!
14.30 CT scan in the RIE xray department
18.00 Together go into the practice to start telling partners R and C and staff
20.00 Visit my Dad to tell him (and my nephew) at his house 3 miles away
21.45 Together meet our unsuspecting daughter off the train in Berwick and tell her in the car on the way home.
3rd October. Start telling friends. D and his wife come for the weekend and we all have a great time together – loads of tears and laughter and start making plans for the future (what future?). Our motto is going to be “plan for the worst, live for the best”.
5th October. All day in RIE medical procedure unit and 8 hours rest after a biopsy of the right lobe of the liver expertly and efficiently explained and performed – another thing to tick on my continuing professional development plan – what to warn patients about when facing a liver biopsy. 2 shots to get a juicy sample from one of the liver lumps. Dr P is gentle but the second shot ... relaxing is not so easy when you are about to be stuck in the ribs for the second time – the second time you know what’s coming! 8 hours of rest – no getting up or out until 8pm is a long time. D reappears and drives me home for company and a long talk. Our daughter is flying to Africa tonight for two and a half weeks.
Now 8 days to wait for the results. Needing regular paracetamol to manage the liver pain and feeling more tired but otherwise managing work. I plan to take holiday at the end of the month and stop working after that until the way ahead is clearer.
13th October. 12.30 Dr M gently explains the microscopic and CT scan results confirming gall bladder cancer and liver spread. He has arranged for us to see Dr W that afternoon to discuss possible treatment options and wishes us well for the future.
13.00 Lunch with D and S
14.00 Dr W introduces herself and explains a recently published 400 patient study in the UK that offers two chemotherapy drugs in a 3 weekly cycle that seems to prolong life expectancy from an average of 2-4 months to 11 months – seems pretty good to us! We look at the scans together – it is good to see that the lumps are where I get the pain and they are round the edge of the liver. Plans are made to start chemotherapy next week at the Western General Hospital – gemcitabine and cisplatin intravenously over 5 hours with anti-sickness medicine – all carefully explained and the potential ill effects discussed. We go shopping afterwards for ramps for my father’s buggy as lifting it in and out of the car is not an option now for Ishbel or I.
16th October. Ruth suggests Dexamethasone for liver pain as paracetmol is not effective on its own.
19th October. Dexamethasone is helping most of the liver pain but it still needs six hourly analgesia so Alan and I agree to change to morphine (oh dear- this is real!) and the pain goes completely for the first time for weeks.
23rd October. 09.00am Western General Hospital. A smart newly decorated and tastefully furnished office-like reception greets one, without the proliferation of notices and educational leaflets that seem to adorn all other NHS waiting rooms. These are usually stuck on walls everywhere to “educate or inform” but only end up looking untidy and unkempt. Here the unit is staffed by friendly, welcoming and very expert nurses, there are some talkative fellow patients – and others with their own more private tale of hope and fear I am sure, but not for discussion now. What an efficiently administered day of chemotherapy! All this while Ishbel went shopping – I am ravenous when I get out at 1700 so we go bun hunting in the nearest shop. No post chemo nausea and no ill effects until crushing lethargy 6 hours later. It lasts for a day.
26th October. 11.00 H1N1 Immunisation – the first dose for an immune-suppressed patient – that’s now me!
29th October. 06.00 start to get to WGH by 9am with neighbours who commute daily. Breakfast en route at sister in law’s house. Blood test results are fine so chemo starts at 1100 and finishes on time at 17.00. R collects me, gives me tea and toast and another friend drives me back home by 19.30.
30th October. Our daughter comes north by delayed train arriving at 5pm shortly after which I have flare up of an old “friend” – colicky tummy pain due to colitis operation scars from 18 years ago. It always settles with rest after a sleep on my right side....but not this time......by 2am and then by 4am .... it hasn’t and I am clearly developing small bowel obstruction. A call to the Borders Emergency Care Doctor agrees I should go into the surgical department at the Borders General Hospital (40miles away). My suggestion of driving there is relinquished to Ishbel after the first 7 miles – it’s more comfy sitting and not trying to drive as well.
31st October. 05.30 IV access, admission by the surgical registrar and onto the ward after an abdominal x-ray to wait to see the consultant. I feel sorry for the difficulties of Mr R.... J and I were in the same year at university – he has a good reputation but I don’t think anyone likes ‘opening up’ a colleague and a friend...CT scan in the afternoon confirms the need for a laparotomy at 1900. J kindly explains his plans to the family who go out for a meal and leave Dad to face the music! Dr C, the anaesthetist,introduces me to the blessings of epidural anaesthesia in a painless and effortlessly efficient way that provides brilliant pain relief for the next 3 days. I wake at 2100 in ITU where I start a 5 star, 3 day stay nursed by a succession of experts in pain care, embarrassment reduction, ice cubes and good humour.
Thus ends October 2009 – I was let home from hospital on 8th November with no need for bowel resection. Saved by the gentle division of adhesions and good post op care, I can restart chemotherapy in two weeks at the Western General and the wound is healing well.
I have had in the month:-
1 MRCP, 2 CTs, 1 plain x-ray, 1 ultra-sound guided liver biopsy, 1 laparotomy, 1 epidural anaesthetic with general anaesthesia for surgery, 1 ITU admission, 1 Medical day care admission, 5 days in a general surgical ward, the first cycle of 3 weeks (2 days) of IV chemotherapy, 1 dose of granulocyte stimulating factor and the 1st dose of H1N1 immunisation.
As well as:-
3 out-patient consultant appointments,
Several inpatient consultant consultations,
The services of a physiotherapist, a dietician and many nurses – both specialist and general.
All this as well as General Practice advice, support and prescriptions.

The NHS comes in for lots of criticism but I am proud to work for it and happy to be looked after by it. Our situation could have been so much worse – if we had lived in nearly any other country in the world, such care would not have been an expectation, let alone the privilege that it is to have received it. We have been blessed.....
And of that more next time.