Chemo 2:4

It's December, and I am too late to upload my novel onto the NaNoWriMo site.  I have 42732 words on my main novel document with about a thousand more in separate documents waiting to be incorporated, but have failed the 50000 target.  Little Joe will be disappointed; he has been in most days to look at the graph the site provides, together with a projection of finishing date, words written today, and words required every day to make the target.  It has been great fun, and by no means a waste of time.  The Christian Writer contact agreed to be my writing buddy, and has driven over from Downham Market twice to meet and discuss, encourage and suggest.  I have never shared anything I have written at this early stage  before, and it has been a very positive experience.  She achieved her 50000 so uploaded yesterday.  I don't think the organisers read the work or do anything with it, it is mainly a supportive and encouragement site, with forums for moaning, getting over writers block, simply procrastinating and searching for information from the thousand of participants worldwide.  Angela and I are going to meet again, maybe before Christmas for a celebration of what we have achieved, and certainly in January to do some editing and preparation for publication.  She already has a novel with a publisher, is finding it frustratingly slow, but at least has some ideas about how to go about it.  She may be able to get me some transport for the Christian Writers Group meetings as well, given that I don't have a car in the mornings and they tend to meet at lunch-time.

Well, apart from singing with the new Dereham Town Singers at the Turning on of Lights in the market place on Sunday, I have done little else this month.  It hasn't been a good month chemo-wise, with every variety of bowel and stomach symptom.  I have had 11 cycles in all, not counting yesterday's, and every time I go through a few days when I think 'this isn't working, I am going to obstruct, the chemo didn't really work last time so why should it work this time', and so forth.  Why I don't learn from one session to the next I don't know.

Yesterday's intravenous has left me very tingly indeed.  I worked on my novel from 4 .0 am until 6.45 this morning, the steroids keeping me awake.  By the time I had made tea for us both and swept up the blackbird and feathers from the kitchen floor I had tingling up to my thighs and had to go back to bed with my little electric pad.  It is definitely a day for warm jobs, and I thought I might get on with my Christmas cake, but found I had no cherries or peel that even remotely fell within the use-by category.  It was much easier in the old days when we used them if they smelled all right.  Anyway, Dave said it was time I updated my blog as Claire uses it to keep in touch, so there you are, Claire, this is for you.  My keyboard gets nice and warm too, so it is a good thing for Day 1.

I saw my oncologist yesterday, and he is concerned that the tingling is persisting longer than it used to, and may persist for ever if I continue this dosage for the remaining 4 sessions, so he suggested I stick with this dose, already 20% lower than recommended because of the reactions last time, for number 4, and then reduce again.  He gave me a confusing spiel about the value of the intravenous, having given me the choice of whether to have it last time.  I said I had gone away with the impression that it would make little difference whether I had the intravenous or not, but he said it had been shown to make a 40% difference.  I wasn't sharp enough to ask '40% of what?' after all his muttered calculations.  If it's 40% of 6 months I have to ask myself it it is worth all the symptoms and disturbance to life-style, but actually the whole process is evolving so rapidly that the figures are out of date before they are published, and it is a brave person who would say 'no thanks' at this stage.

We are going to try to get our Christmas decs up this Friday. Usually we leave them until the weekend before Christmas, but with Joe and Sally coming this weekend because I can't make the annual trip to Stone for our pre-Christmas bash, and with the boys so full of excitement, we decided to make a full season of it this year.  The first doors on the Advent calendars were opened this morning.  Joe is all kitted out as a shepherd ready for the reception and Year 1 play.  James has been invited to the Dinosaur park for a little mate's party (Hope the weather stays fine).  Mrs Reeve's class were invited to take a favourite Christmas book to school to be read in class, and Joe took 'Father Christmas needs a wee'.  It will be interesting to see if she uses that one.

Mary-Ann is on three days a week at present, and not getting the supply expected from her school to make up her 4 days.  She likes the time at home, but not the drop in salary.  She is cleaning upstairs this morning, so I think I'll get her down for a cup of something.

I can't believe it is a month since I blogged.  Partly this has been due to finally sending my laptop in for repair of an unreliable mains lead.  I rarely use the battery, in fact I don't think it is much good.  HP used to send me all sorts of warnings about faulty batteries, but they were vague about who had got them and all the click here buttons to find out were useless.  So I use mains and keep an eye on the charging button at the bottom of the screen and give the lead a wiggle if it goes off.  Joe was fairly convinced it was the connection inside the laptop that was damaged (by me tripping over the lead all the time) but the repairers said it was the lead itself and also that there was a lot of dust and rubbish making the fan work overtime.  It's true, the fan was on most of the time, and I think the failure to successfully burn DVDs all the way through was due to over-heating, so that part is better after their work, although the mains connection is still intermittent.

I hate to say it, but I felt disabled without my laptop.  Sitting in Dave's office catching up with e-mails is not the same at all.  The really frustrating thing was that I had an e-mail from someone I met on the Christian writing week, and she keeps me in touch with the local group even though I haven't been able to make the meetings. She mentioned that she was thinking of signing up for a project called National Novel Writing Month, which occurs every November.  It involves signing up with the intention of producing a first draft of a 50,000 word novel in the 30 days of November.  We both signed up, primarily for the discipline of writing every day.  I am several thousand words behind schedule at present, with so much to do, mostly domestic trivia, but still important.  If I had any intention of writing a best-seller I could justify treating it as a job, and disappearing into the annexe for 6 - 8 hours every day, but it isn't like that at all.  I am incorporating recent experiences into a fictional novel, and because I am working in the first person even I can see that there are implications regarding the other characters and my relationships with them.  Even so, it makes more sense to write about situations that I have first-hand experience of than having to do research on background that I know nothing about.  My lead character is as fictional as I can make her.  I have even made her experience of the chemo day-ward different from mine by letting her go on her own, and even make a relationship with a male patient.  She is divorced, and her background bears no resemblance to mine in tems of events, and if Dave chooses to read any wishful thinking into that we have wasted 44 years.

Mary-Ann was there when I was trying to explain to Dot what I was doing, and her reaction to my lead character's situation was very negative, which tells me that quite enough of her life at the moment is centred on my cancer.  That was discouraging, but then I thought she doesn't have to read it.  I really am doing this for myself, as a challenge, and because I have always found it easiest to order my thoughts and understand where I am at when I write it down.  I don't hold out much hope of acheiving the 50,000.  I don't find complete drafts very easy, but keep going back read through and .make corrections.

Tomorrow is chemo 3, so today I have taken 60 steroid tablets and three piriton with some ranitidine to protect my stomach.  After chemo day the routine is 4 steroid tablets a day  for 3 days, and even that, with the second dose of 2 tablets at lunchtime, keeps me awake.  This afternoon I slept for two hours and then didn't want to get up, under the influence of 2 piriton tablets, at breakfast and lunch.  I had started to feel lively by tea-time, and recognised that this was the steroid kicking in rather later than the piriton, so we went off to cell-group reserving the final piriton until bed-time.  Even I recognised that I was unusually talkative, enjoying the fact that my brain seemed to be making connections and producing the words in a way that has eluded me lately.  I wonder how many much of what I said made sense to anyone else  Dave was a bit fed up, because we didn't get away until 9.0.  I was still buzzing when we got home, so I have cleaned my teeth, got into my nightie and dressing-gown, had a mug of camomile and settled with my lap-top until sleep intervenes.

Piriton is quite quick to act, so I am going to try to get a few words on my novel.  If I am going to catch up by the mid-month I can see the weekend giving me typist's RSI.  Anyway, here goes.

Gressenhall Rural Life

Went to Gressenhall with Mary, Dom and James this morning.  The black sow had had piglets this morning!  How about that for timing.  James had his time in the play area and Mary and I did the nostalgia thing in all the furnished rooms and outhouses: 'yes, we had one of those.'

It has been an amazingly good week.  I have had a lot of tummy pain, which I think must be a chemo side-effect, but otherwise have just been able to get on with things and not think too much about it.  It has been difficult to remember to take the tablets, in spite of setting the alarm on my mobile for 6.30 pm, which is normally at the end of the evening meal.  One night I had to make toast at 11.0 pm because I realised I had not dosed myself but so far I have not actually missed any completely.  The problem is I am not a mobile phone person, so it is hardly ever with me and probably tinkles to itself uselessly in another room.

My last blog was written quite late in the evening with the television on, and may well have seemed a bit odd and incomprehensible.  It actually grew out of an intermittent train of thought that is very real to me, but is intemittent because that is how all my thinking is these days.  It is as though I can only grasp deep truth by the coat-tails, never full on.  Anway, the following morning in bed, my daily Bible portion for the day made me sit up and take notice, and feel that I was grasping something significant albeit in bit-sze pieces.  Bear in mind that it is a dated choice of reading, and I was reading it on the appointed day:
 ^' Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.  Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.'

The reading went on to specify that we should concentrate our thinking on good things: true, honourable and right; pure and lovely and admirable; excellent and worthy of praise.  A long way from worrying about intellectual reasoning, the meaning of things and issues of life and death.  It's not that I think I should never have given them any thought, but somehow I feel this is not the time in my life for it.  I have come full circle and learned enough to know that it is fascinating and motivating but not essential.  I can be at peace without thinking God needs me to make anything happen.  If I had been born like my uncle, 'poor little Albert', I would have been held in his hand just the same, and if at the end of my life my memory dissolves like Mum's, I shall not be abandoned.  It is humiliating, and hard to accept, but I am sure it is true.

Mary is coming tomorrow and staying overnight.  I think we are going to look at some video editing, although I had thought she had a little video machine, and in fact she hasn't.  Maybe she has some on her camera.  She might want to look at some of the footage of Mum, especially some lovely bits Mary-Ann and I found of her in Wales.

This is my seventh day of this new course of chemo.  It has not been at all bad.  The weather has been not just good, but hot, like 28c.  This has meant I have hardly been troubled by the cold sensitivity at all.  I have been back on cold drinks for several days, able to hang out washing, fetch stuff from the fridge, wash fruit and veg under the tap.  I have done both my school walks, and expect to complete my week's duties tomorrow.  I did my Grandma day yesterday, and although we didn't risk going into town we made cookies, finished a scrapbook page for James's album and played ball outside.

I simply haven't had the Day 5 drop.  I feel very calm, and happy that I am doing what is right for me at this time of my life.  I am not achieving great things, making a difference in the world, improving my mind or leaving behind a great legacy of wisdom and provision, but just being, and feeling a great sense of thankfulness that it is OK just to be me.  I may never know in this life what this is all about, how I fit into the great scheme of things, and why things are the way they are.  In that I am no different to anyone else on the planet, although I am certainly having it easier than most of the world.

It was our cell-group meeting last night.  We have a lovely lady octogenarian who exudes calm trust in God and takes a keen interest in everyone and their doings.  She never misses the Sunday service, but when questioned about her reaction to the sermon she freely admits that she loses it as soon as she leaves the building.  I wish I were that honest, because I do too.  I am not sure if my mind is going, or my priorities for concentration have changed.  I was thinking about that today hanging out the washing: about the relationship between mind and spirit, and how the spirit functions without mind.  Does it?  Does a relationship with God require full function of the whole being?  That can't be right.  Instinct tells me that often those with the deepest spiritual awareness are those with the least mental capacity.  Sometimes I think so-called intelligence works in opposition to the spirit, looking for explanations, patterns, rules, power.  I have tried hard all my life - striven, worried, measured myself, gritted my teeth and gone on trying.  It has been part of who I am, it has driven what I have done, but it hasn't made me any more worthy.  And has God looked down on me with a smile and a shrug, thinking to himself: there's always one who has to do it the hard way? 

Maybe I'm just hanging out too much washing.

Apart from my drip arm being painful I thoroughly enjoyed choir.  It is very relaxed and we had yet more new people tonight. Graham, Dereham's Gareth Malone, is very patient and joins in the fun himself, but there is a great willingness by everyone to make it work.The wisecracks from the back ease the potential tension for the non-sight-readers.  I have no idea how many people are actually producing the notes on the music, bu it sounds good.  What's more, it has given me an hour and a half of being normal and not even thinking about the difficult days ahead.

Day 1 (again!)

Just a quick post to say I hd my first chemo of this set without incident, home just after 1.0.  They gave me intravenous steroids to cover the possibility of a reaction.  I have a very sore arm but the redness has already faded.  The polyneuropathy is setting in, too uncomfortable to move the cup I had had my tea in outside this aftenoon, so warming cutlery on the Rayburn and drinking warm water with meals.  Dot has produced a hot water bottle for my arm and my flask is all lined up for night-time drinks. 

I slept for two hours when we got home and would have slept all evening if Dave hadn't woken me in case I couldn't sleep tonight.  I was sleeping off the iv piriton, and got very grumpy and a bit tearful especially when everyone else had an iced lolly. It has been such a lovely day, weather-wise.

Off to choir tonight, with Mary-Ann and Dave.  I might as well do that as sit here feelling sorry for myself.  Choir numbers are up to the 50s, great enthusiasm all round.

Time is whizzing by.  My chemo starts on Wednesday, and I am certainly not looking forward to it, only to getting it started and eventually finished.  I confess to not having much faith in it.  I completed the first session with flying colours, and still had a recurrence and a fresh obstruction.  I was very disillusioned by the oncologist's attitude, which seemed to me very different from the first time around.  He said the three-weekly infusion was the worst part for side-effects, and only produced a small proportion of the benefit.  Then he said it was up to me whether I had it this time!  Do they put this onus on everyone, or only those with medical background who are supposed to be able to be dispassionate and scientific?  I have been meaning to ring and ask the Speciality nurse if there is someone else I can discuss it with, but I have been so busy enjoying my few weeks of freedom from treatment that I haven't go round to it.

Last week I attended a Creative Writing course at Letton Hall, a Christian conference centre, run by a husband and wife team of Christian authors.  It was a last minute booking when I realised that due to the postponement of my chemo on the grounds of urinary infection I was well and free.   I was also fed up with housework and harvesting and weeding and washing, so three days in the company of enthusiastic and creative people was a real treat.  It was a residential course, but being just up the road I attended as a day visitor, doing mornings and lunch only.  At the end of the first morning we were invited to choose a subject from a series of index cards on the table and write about it as an exercise.  I couldn't resist the invitation to write a fairy tale to include a princess, a dragon, an enchantment of some sort and a tomato.  It was really the tomato that took my eye, partly because of the huge crop we have in the greenhouse, and partly because our little James calls them 'benatoes'.  My story about Princess Benato and the tomato spell was written in an hour or two before tea at home, causing a bit of a grump because I didn't set the table, but then proving an instant hit with the family over the meal-table.  To my surprise it produced the same reaction from the group the next day, and the course leader has offered to try it on his publisher when I have had a chance to tweak it a bit.

I don't usually write, or read to the children, stuff about witches, spells, magic etc.   I confessed this to the group, and given that they were all Christian aspiring witers was impressed by their lack of inhibition in this field.  The consensus seemed to be that in the imaginative thought-world of the child a dragon or a spell or two are a traditional way of testing out reality, and very useful in beginning to get to grips with the opposing worlds of good and evil and the impact of the supernatural.  It was also felt that my story was strewn with morals and had a good spirit.  Well, there you are, we shall see.

Last night I had the best night's sleep and today I have had the best day since my op.  I haven't really blogged my symptoms because even I have been bored by them, but having had frequency and painful weeing since I was in hospital and being treated with antibiotics fo five of the eight weeks without improvement, yesterday I went to the day procedure unit at N&N and had a stent removed from my left ureter.

I remember the surgeon mentioning the presence of this tube inside my ureter the day after my op, but not being fully in my right mind I didn't understand why it was there, what would happen to it and what its side-effects might be.  The truth is, I don't think he told me most of that!  The GP has been treating my presumed infection without confirmation of the bug, as all the urine cultures showed a mixed infection, u sually a sign of contamination from the skin.  A couple of weeks ago I got an appointment to attend for removal of the stent, and hoped this would allow the infection to resolve, so I have been looking forward to it.  I can't start my chemo until there is no infection, so it was quite crucial.

The African doctor was quite willing to give me all the information I asked for, although volunteering little and clearly not registering that I was medical.  He explained that the stent had been inserted by the urologist before my abdomen was opened, to enable dye to be inserted and the ureter to be identified during surgery and therefore not damaged.  He said I would be given an antibiotic injection after removal to deal with any infection introduced during the procedure, but when I remarked that I had had an infection for nearly 8 weeks he said it probably wasn't that at all, but irritation from the end of the stent which is left protruding into the bladder for ease of removal!  I wish someone had told me that 8 weeks ago!  I asked to see the stent which had been whisked away by the nurse, and was surprised to see that it was 8 or 9 inches long, and curled on itself at both ends.  If the lower end was like that in my bladder I am not surprised that I have been uncomfortable all the time except when horizontal.

Anyway, I felt the improvement straight away, and today has been great.  I had both boys all morning; we made muesli cookies, then they each made a 'palm-leaf book' from Joe's library book which we call the 'how to make a book book'. (Joe thinks the duplication of the word book is hilarious.)  The palm-leaf book is separate strips of card strung together with plenty of cord so they can be opened out, and they each did a simple recipe for Mary-Ann.  With scrap-booking card outer covers and beads to stop the string coming out, they looked lovely.  The boys concentrated well, with a short break for squash and a cookie, and only had time for a few minutes television before lunch.

Joe starts school tomorrow, and JAmes will be at nursery as he is every Wednesday.  It will seem very strange without them.  I had better get to bed now, as we will be off at 8.30 to walk to school.  Dot is coming with me tomorrow, but if I am as well as I have been today I don't foresee any problem.

I haven't blogged since we got home, and reading through last Friday's post I realise I left us half way through the last day.  It was in fact a good, non-stressful day. We enjoyed Tixall Wide but were disappointed not to see kingfishers there.  We finally moored up about a mile from the boatyard, with two locks to do in the morning.  We BBQd again, but ate it indoors.  We were back at the boatyard well before nine, moored up to one of the parked boats and went off to the lounge to have another big breakfast.  Joe and Sally joined us, then Steve and Kate went home and we stayed an extra day in Stone.  Fantastic Italian meal out, and then a great evening under Joe's new patio heater, listening to music, and drinking.  In the afternoon Dave had helped Joe install a double outdoor plug, and renew the wiring to one of the front room plugs.  Joe was very pleased, even though the front room is half finished, with bare parquet blotched with paint, and the fireplace partly stripped out.  It will be lovely when it is done.

Life has been a bit flat since we came home.  The Knees have had three days at Clogwyn, so we have been quiet, with no-one but the cats to visit us in bed in the mornings.  They are just back, and we are going to have a take out curry.  Normal life has been resumed.

This is our last full day on Martha Ginger.  We made it to Penkridge last night and had an excellent pub meal with Joe and Sal at The Boat.  Autherley Junction was a bit tricky; we came out of a lock straight onto a T junction, across a huge winding hole.  We had to make a sharp left, but because the back end was still in the confines of the lock until the last minute, there wasn't room to swing round.  We pushed our nose into a well-damaged elder on the opposite bank - I suspect it is there to cushion the blow!

Unless Great Haywood is time-consuming today should be quite manageable, so we laid in until quarter to eight, had breakfast and went unwashed into Penkridge to shop.  And I had it in mind to take photos of the school where Mary-Ann was Head for 4 years.  That all worked out well, the sun is shining - again! - and all is peaceful on the water.  We have run alongside the M6 for quite a while, and the South-bound traffic is hardly moving.  4mph looks good in that situation.

We made it to Norbury Junction last evening, a very long day.  There were some tricky locks and one set of five took us about two hours. The problem was too many people going through in one direction so that we came out of a lock into very shallow mooring for the next one.  It was a situation where ideally you would wait in the lock until the next one was ready, avoiding mooring up in the shallows, but not everyone understood that, and some people get so impatient you would think they were late for work!  To be fair, all the hired boats are working to a deadline, and we have found already that however well you plan there is nothing you can do about the flow of traffic.  We also had a delay when our back fender got well and truly stuck under the lock we had just come through.  A lovely family waiting behind us came and stood on the back end and weighed it down enough to free the fender and its bolts and chains, but it was an embarrassing moment.

I have accidentally deleted most of my still pictures, getting in a muddle transferring them to my portabale hard drive, and deleting them from the camera before checking they were saved.  I have discovered that I have no picture of our lovely boat to send the boys, so we need to remedy that when we can get out of the boat.  As I write, Dave has tapped on the window, and I see him and Kate trudging up the towpath to our first lock of the day.  They are going to try to dispose of yesterdays rubbish and take a photo while they are out, but once we get into the lock I will lose coverage so its time to stop before I lose everything.

I last blogged when the others had gone to find food for the BBQ.  Inevitably they also found a canal-side pub where we had a sandwich and beer, and where Steve looked over the bridge and realised that our next manoevre was a left handed, right-angle bend into the Middlewich branch of the Shropshire Union Canal.  To make matters worse the water top up ;point was almost at the bend, and the canal sent immediately under a bridge and into a lock.  And there was a queue.  So what looked like a nive striaghtforward day suddenly looked very tricky.  It all worked out in the end though and we made it to Church Minshall in good time for our BBQ.

Yesterday was  15 miles and 17 locks day, but 13 of the locks were at the end of the day in Audlem.  By the time we got there we were all shattered so we abandoned the plan and had scampi and chips at the Shroppie Fly, leaving 9 of yesterdays locks to do this morning before starting on our scheuled 20 miles and 12 locks.  As I write we are moored up in Market Drayton, filling up with water yet again.  We have been moving since 8 0'clcock and are doing pretty well, so hopefully we shall make it to Gnosall this evening and be back on track to meet up with Joe and Sal in Penkridge tomorrow.

We are having a leisurely day today, because we covered so much water yesterday.  After the tunnel and all the locks we arrived at our destination, Hassall Green, at about 4.20.  According to Nicholson's Guide we should have had quite a choice of eating places after our hard day, but had settled on either The Canal Centre, which had shops, restaurant, maps etc, or the Romping Donkey for a pub meal.  Unfortunately the Romping Donkey was boarded up, and the Canal Centre had closed for the day.  Nothing daunted, our team of three carried on, through cold and rain, and completed an extra 9 locks arriving at Wheelock tired and hungry but well satisfied.  We moored up  and went in search of food.  Right next to the tow-path was a restaurant called the Old Mill which is a very nice Italian eating place: lots of exposed brick and beams, round oak tables and padded chairs, and attentive service.  The hilarious thing was that we had promised ourselves a 'dirty meal' like fish and chips or a take-out, because none of us had showered.  So there we sat in all our unwashed glory, dining out in style.  I guess we all smelt the same, because none of us remarked anything, and the staff were very polite.  I fancied a mixed seafood risotto but was a bit anxious about eating mussels and octopus and other shellfish - the last thing I want is to make myself ill and spoil everyone's holiday.  There was a very expensive mixed seafood on the Specials board which was salmon and tuna and prawns, so I had a conversation with the waitress about what would be in my risotto.  I am pretty sure that she asked me what I would not want to find there, so I said mussels and shellfish.  Somehow the wrong message got through and my tomato risotto rice was full of mussels, and squid.  It was gorgeous and although I was so full I had to go to bed early it has done me no harm.  All the food was good, so we felt the mislaid plans had turned out very successfully.

We laid in until 8.0 this morning, had breakfast and were chugging away by 8.45.  It has been a pleasant journey through some rural areas with orchards and well-tended gardens bordering the canal, and some more industrial areas, although nothing like the potteries.  Middlewich is a salt-producing town and has been since Roman times.  We passed the back of a big plant with an unbelievable mountain of pure white salt.  Apparently they extract it from the earth, and the workings have been so extensive that the canal has sunk many times and had to be shored up.

We are moored in Middlewich now at 12 midday, and the others have gone on a foray for the makings of a BBQ tonight.  It is a lovely bright sunny day with blue sky, although not hot, and we only have about 6 miles to do to reach the planned destination.  Whether we stick to that remains to be seen.  Once Dave and Kate get started on locks there is no stopping them.

I am doing pretty well, managing to take photos and some video, and to sit on a chair up the back some of the time.  I brought embroidery, but really there is not a lot of point in looking at what I am stitching when the scenery is being left behind at the rate of four miles an hour.

Canal Cruising

We are actually doing it! I am blogging from Martha Ginger, our 72 ft narrow boat.  It has just started to rain and Steve is at the back end manning the tiller while Dave and Kate beaver up and down the tow path doing the locks.  This is a really heavy day.  Our first major task was getting through the Harecastle Tunnel, which is almost 3000 yds long and takes about an hour.  We thought it was going to be  very claustrophobic and scary, but it was fascinating.  There were a few stalactites and some areas where the inside of the tunnel was coated with ripples of shiny stuff (?iron pyrites), but for the most part we were very impressed by the good state of Thomas Telford's brickwork. 

Anyway, soon after the tunnel we started on the locks and I believe the series we are doing now is known as Heartbreak Hill.  There are 16 locks in 10 miles after the tunnel.  We are doing well though, and have been quite lucky in that many of the locks have been ready to chug into, because of boats coming the other way.  We hope to find a nice pub to eat in this evening.  Hopefully we won't be as late as we were yesterday mooring up.  We were not able to leave the boatyard until after 3.0, and we were determined to be within easy reach of the tunnel before we moored, but it meant we were motoring until well after eight.  We chose to do the Four Counties ring this way round to get the hard bits out of the way first.

I feel pretty useless as I am not allowed to push or pull, and can't even stay on my feet for very long.  Something inside reacts badly to gravity, so I have retire at intervals to get horizontal.  Never mind, John Grishams The Confession is good company and at least I don't get wet and cold.

We started our holiday on Friday, and had a lovely evening with Joe and Sally.  Steve and Kate joined us in Stone just before ten on Saturday morning, and we all went to The Lounge for breakfast.  We shopped for our trip in the street market and the co-op opposite the boatyard, then had lunch-time drinks outside before presenting ourselves at Canal Cruising.  Dave bought me a dongle and Joe installed it for me on the first leg of our journey.  After about half an hour he had finished and decided to get off and meet up with Sal - he was still in his home neighbourhood!  He and Sal did their own thing for a bit, then surprised us by joining us for tea and cake at Barlaston.

The sun has come out, it is too pleasant outside to be in here blogging, but I will try to add bits as we go along.

It's ages since I blogged.  I have been a bit bored with myself, tired and frustrated by inactivity.  The worst thing has been an ongoing urinary tract infection.  I came out of hospital with a 'full house' of dipstick positives, (except sugar), an inconclusive culture result, and a 3 day course of ciprofloxacin.  From the start it has been difficult to tell how much of my pain was due to the operation and how much to the infection.  I had a scary do one afternoon when I retired for my afternoon nap just before the Knees took the children out for the afternoon and Dave went to Tesco.  The pain was worse than usual but suddenly became frightening, so that I could not ease it by any change of posture, and even taking a deep breath hurt.  I really thought one of my anastomoses had leaked, and sent for the doctor.  I think it is only the third time in my life that I have done that - twice on the two occasions when I obstructed.  It did eventually settle with a codeine and I stayed in bed until morning.  Since then I have had several telephone conversations with my GP about the urine infection.  She prescribed a week of trimethoprim.  This appeared to produce a remarkable improvement in the bowel symptoms, but after the first couple of doses no relief from the painful wee, so yesterday I made an appointment and took myself on the bus to the surgery.  I told her I needed to speak face to face to see whether she was laughing at me.  She assured me I was not being pathetic, and I thinj she meant it.  I am now back on ciprofloxacin, which yesterday seemed very hopeful but today is no better.  I think there is some underlying problem here, either with trauma from the operation or with the stent in my ureter.  I certainly don't think they will let me start chemo until it is sorted.

Tomorrow we go on holiday, so that will be something more interesting to think about.  I am disappointed that I am still so uncomfortable but I think the best plan is to go back to taking regular paracetamol and try to ignore it. 

Mary-Ann and Dom have Rachel and Dave staying with their two children, and they all seem to be having a lovely time.  They went to High Lodge yesterday and are at Gressenhall today.  We plan to BBQ this evening.  It is very windy but not really cold, and the children have been having a great time on the trampoline and the scaffolding climbing frame that Dave put together for the boys last week.  I really think they should wear hard hats, but so far nothing worse than a few leg and back bruises.  Both our boys are in love with Faith, so little Evie from school has some competition.

Last week we had two BBQs which went well outside on the patio, so tried for a third on the third of August.  Before Dave could even get the meat on the grill the heavens opened.  We had pushed our luck too far!  It was a real thunderstorm, so the food was cooked in the oven, but between bursts of rain Dave rushed it out to get a bit of smoke!

Results

Jane the colorectal nurse rang this morning, to let me know the pathology report is through and it appears the multidisciplinary team has alreaady met and floated a plan.  The dysplastic polyp in the right colon had actually gone beyond dysplastic, and was a new tumour, but has been completely removed. The tumour at the original site had not penetrated through the bowel wall, but one out of nine lymph nodes contained tumour, so the next step is to have a chat with the oncologist with a view to starting another full course of chemo between 6 and 12 weeks after surgery, probably early September.  I am not relishing the thought, and asked about radiotherapy because that was mentioned in Out-patients, but there is no remaining target, which I suppose has to be good news.  The chemo aims to get rid of any sneaky cells hiding in unexpected places.

Jane didn't think the amount of pain I have been in was anything surprising and thought I was doing well.  I need to be told that, because when I look back to last Wednesday I can't see a lot of improvement.  I suppose there was a bit of adrenaline associated with getting home, whereas now it just feels like a long haul.  She agreed with me that the four sections of my bowel are probably not working as a unit yet, so hold-ups of wind are bound to cause symptoms.

Anyway, the next thing to get ready for is the barge holiday, which Jane was keen for me to have as part of my recuperation.  I hope the others won't get too worn out having to share all the heavy stuff, but at least I will be able to help with the catering and planning the stages of the journey.

I have an appointment at rheumatology on August 9th, to get my trigger thumb injected.  I originally went to ask for this when I thought I might need a colostomy, because my Left thumb was pretty useless and I was worried about having enough manual dexterity to cope with the procedures.  The thumb is actually a lot better after the enforced rest, but the underlying joint changes have been getting worse for a long time so I shall go and see what they can do for me.  I hope it doesn't make me even more useless for the holiday!

Post-op

This cancer journey of mine is certainly an adventure with endless twists and turns.  I came home yesterday after 8 days in the Norfolk and Norwich, having had my surgery.  I did my factual update for those on my friends and family group e-mails last evening, but this blog is for me and anyone who wants to share it with me. If you don't have the stomach for the detail and reflection, you don't have to read it, but I have found that keeping this diary helps me get things in perspective and look at the bigger picture.

I read through my last blog before starting this post and it reminded me of how jubilant I was to have a named consultant and a PLAN.  On our wedding anniversary on July 8th we were supposed to be having a meal with Steve and Kate and our minnister and his wife in Gressenhall.  By lunch-time that day I was fairly sure I was obstructing.  I took some laxative just to give mysef every chance of being wrong, and suffered an increase in pain and wind all afternoon.  It was Friday!  I had a visit from my GP after evening surgery and was able to persuade her that admission that day would lead to the same sort of chaos that accompanied my previous admission last April.  I was not completely obstructed, vomiting or toxic in any way, so I 'sat on it' all weekend, eating very little apart from yoghourt and doing odd jobs that needed doing before I could be admitted (like pairing up socks, and picking and freezing blackberries.)  I saw the weekend doctor on the Sunday morning and he assured me that it was not an emergency as I was not vomiting poo.

First thing in the morning I left a message on the colorectal nurses answerphone, and before 9 o'clock I had a call from GB to say she had already spoken with my surgeon and he wanted me admitted to the admissions ward, no GP visit or letter required.  Dave was working, and we agreed a time of 11.0 o'clock to present myself.  I was very calm; I had known all weekend that this was inevitable, and it felt like for once I was in control!  I made some flapjacks, which was a nice easy thing to do and stopped me moping.

The admissions ward was very sniffy about my not having a GP letter.  I was being admitted as an emergency anyway, and my surgeon was not on call.  It was beginning to feel a bit chaotic, and when I was told that my surgeon had been on call all weekend I felt my attempted manipulation had worked against me.  At some point in the afternoon I was admitted onto Dilham Ward, where I had been last April.  Blood tests, Xrays and ECG were done, and a cannula inserted ready for a drip.  I had the stoma nurse visit that I was due to have on August 5th, and she left me with two black felt-tip sites marked out for an ileostomy or colostomy should either be necessary.

The duty surgeon for the day was in fact a colorectal surgeon, and he assured me that the chances of tomorrow's duty surgeon also having that speciality was very high.  He also told me that my surgeon had a full scheduled list for the next day, and although he was fully involved he would not be able to do my op.  At this stage, and I cannot remember how it happened, the way opened up for me to be frank about my insecurities regarding emergency treatment, and my fear that the plans we had hatched a couple of weeks before would come to nothing.  He appears to have taken it all on board, because the next morning I was told that I was on my surgeon's list for the afternoon.  I don't know how to thank him because I don't know what went on behind the scenes, but from my point of view it was a perfect outcome.  I also acknowledge that for me to get my way there may well have been others who didn't, but at the time I could only defend my corner and let those in control make things as good as possible.  I do feel that God was in it, that all the prayer being offered up on my behalf, and the blessings that were showered on me at the last cell-group, were somehow holding everything together and I hope everyone was blessed by it.

So I had my promised surgery.  And the rest!  Things were pretty much stuck down and muddled down there.  Somehow the small bowel had got involved, so a chunk of that was removed in order to free the recurrent lesion.  The latter was threatening the patency of the ureter on the left, so a stent was inserted to hold it open.  The uterus (womb) was stuck too, so they called in the gynaecologist who removed it together with the remaining ovary and tube.  The dysplastic area in the right colon was removed.

I don't remember anything before about 9.30pm when I woke briefly in the ward to be told Dave sent his love and would see me tomorrow.  I remember asking if I had missed visiting time.  During the night I had a feel around and my fingers found steel closure clips and shiny soft vinyl.  I remember thinking that it had come to a colostomy after all, but that I had been well prepared and would cope.  I was just glad it was all over.

My surgeon came to see me very early and explained what he had done.  The description was missing the ostomy word - was he leading up to it gently?  I asked.  No, he said, everything joined up again.  Wow! I had been fingering the spray on dressing over my clips and jumping to conclusions.

By the end of the second day I had managed to pull out both my drip and the epidural, so pain relief was initally by iv morphine via a patient controlled device rather than epidural fentanyl.  I wasn't good on the morphine, very sleepy and with less reliable pain relief.  I was transferred to a combination of paracetamol and oramorph, but didn't like it because I was restless and confused, so most of my week was managed with paracetamol and codeine.  The pain was horrible and made moving about very difficult, in spite of the chiding of the physio and the example of other people in the ward.  It was a week before I emptied my bowel and realised that about 70% of the pain was internal poo pressure.  Suddenly I could straighten up, stride a bit and feel I could eat more than a couple of teaspoons of food at a time.

What follows below is detailed poo-talk:
I forgot to say that the evening before my surgery I had had a major explosive clear-out, causing the surgeon to ask me whether I would like to go home and be scheduled in later.  He explained that an incomplete obstruction may do this from time to time but that it did not indicate a resolution of the problem.  This meant that I was filling up afresh as a result of eating, and that the usual early diarrhoea was modified by the codeine.  So I have had the reassurance of several panfuls of normal sized poo, after fifteen months of little stringy bits.  (Squeamish please note:  I did give you permission not to share this!)

My surgeon went on holiday at the weekend (how's that for timing), but I was well attended both by the original surgeon and my sugeon's team.  It had been mentioned that once I got 'things moving' I should be able to go home, and I was able to negotiate that quite quickly the morning after, so that Dave could pick me up at the start of visiting.  I was feeling much less dependent by then, and longing for my own bed (and control over how long I spent in it), a cuddle in the night, the boys happy voices, edible food and freedom from bleeping.  The nurses say they hear the bleeps at home - the problem is that they don't appear to register them at work!

This morning I put a white loaf in the breadmaker as I am supposed to be on low-fibre for a while, did some work on this blog, made courgette soup for lunch and motivated Dave to get on with my strawberry bed.  The 60 day plants were holed in just before I went to the hospital, and need t o spread themselves as they are supposed to fruit in September.  Dom cleared the lunch things while I went to bed to read and sleep for an hour and a half.  I feel quite pleased with my first day.

I am prepared to hear that adjuvant treatment is needed.  All that invasion of adjacent organs means that the tumour was more active than we had believed, at least, that is how I see it.  If I recover as well as I have begun there is a strong possibility that I coud go on the canal holiday.  Once I get on the boat I could just rest there without getting off for the whole week.  No locks for me I am afraid.  I hope that by the beginning of the autumn term I shall be able to resume at least some of my grandma days, which I certainly couldn't have done with the August operation date.

I have been well and truly blessed in the last two weeks, in timing, relationships, kindness and care, the skill of the right surgeon at the right time, and the sense that God is smiling as he blesses me.  When I have felt able I have continued with the Celtic Daily Prayer readings, and been amazed at how they have spoken into my situation, with a mixture of reassurance of God's wisdom and power as he brings me through this, and reminders that these blessings are to be passed on.

Medical research is all about outcomes - short-term outcomes.  It talks about life expectancy, prolongation of life, cure of disease, but never about how many people die eventually!  Death is the ultimate failure of medical science, and pushing it back is what drives research, but we don't have to adopt the attitudes of medical science.  They have a purpose which is secondary to the business of enjoying the journey, growing closer to the Creator and looking forward to an assured end.  I am still enjoying the journey, still able to feel wonder and excitement, to recognise small blessings.  God is so good!

Here we go again

I saw my surgeon yesterday.  He was actually the same one as last time, who told me I was not really his patient and he didn't know a lot about me and wouldn't need to see me again unless the tests he would arrange for me at intervals showed something needing intervention.  Since that visit I had a long chat with Jane the liaison nurse, expressing my dissatisfaction with never having had a consultant who accepted any responsibility for me or showed any interest in me.  She took it on board and within days let me know that I now belonged to the surgeon who had seen me.

This time was so different.  I knew before we went that the tests were not clear, because if they had been I am sure Jane would have phoned, and they would not have wasted a 9 0'clock appointment just to tell me all was well.  Having been called in from the waiting room we sat in his ante-room for about 5 minutes while he 'was reading my notes'.  I actually shed tears of nervous anticipation, and commented to Dave that they are  masters of suspense.  This time we had the chairs and he sat on the couch.  It was the first time I have been spoken to as a fully dressed adult on a chair, not a bed, and it did make a difference.  He told us there was recurrence at the original site of the cancer, and an area of dysplasia where I had seen the endoscopist hesitating and placing a 'marker' 4 weeks previously.  He went through the possibilities for radiotherapy and chemotherapy, which filled me with dread, but then came on to his own preference for surgery.  His enthusiasm for this matched my own instinctive desire to get rid of the offending cells, so we agreed quite easily that he would operate, aiming to remove both the affected areas and join up the cut ends.  If blood supply or unexpected extension of the tumour made this difficult he would remove the whole colon and create a colostomy, (a 'bag').

When we talked about time-scale it turned out that he had no availability much before our August holiday.  He did not feel the cancer was progressing rapidly, rather that it had been sitting there for some time, and was more than happy to plan the op for the week after we do the Four Counties Ring with Steve and Kate.  I shall have my pre-ops before we go away, and also colostomy training just in case, then a lovely carefree week away before arriving at hospital starved and raring to go on August 23rd.

This is all so different from my experience of emergency surgery last April, when everything was a question mark, the surgery was difficult because of the internal log-jam and I had no preparation other than a pre-med.  We both came out  of the consulting room feeling confident and positive, having been given enough facts to feel we understood what was happening and having had some input into the planning and intervention.

The really good thing is that there was no evidence of 'distant spread.'  This diagnosis hung over us from December to February with its grim prognosis, and we were both grateful for healing from that, whatever it actually was.  When the surgeon said yesterday that he hoped not to have to do a colostomy in August, because if he had to go back in in five years time that would make things easier, Dave picked up on the inference that he thought I could well be still worthy of surgery in five years time.  Whereas the oncologist had told us in no uncertain terms that 3 lots of chemo was the limit (who would want three lots?!), the surgeon seemed unphased by the prospect of a bit of future weeding.

The previous surgery has left me with quite disabling bowel urgency after eating, and frequent calls of nature during the night, waking me from sleep.  It is very much part of the plan that further surgery will aim to relieve this, and in fact that will make a huge difference to my life, the way I spend my days and the way I plan social activity.  Altogether, more positives than negatives.

What's God up to?  I don't know, but the day before my appointment I woke early and picked up 'Celtic Daily Prayer', the book we bought after the Church Weekend last July.  I read the set readings for that day, Psalm 118:1-3, Isaiah 58:6-12 and from Luke the parable of the Good Samaritan.  I was gob-smacked, and really felt even before we went to the appointment that God was in control, more than able to look after me, and that my priority was to 'look after the weak, break bonds, care for my neighbour.....'.  I can live with that.

We celebrated little Joe's 5th birthday last Tuesday, and on Saturday he invited 8 little friends to his party at Planet Zoom.  If you can stand two hours of ear-splitting noise it is an easy way to throw a child's party.  It was an interesting experience for us as well, as most of the Mum's stayed and joined us for a cup of tea and to observe the tea in an upstairs room.  I had visualised a traditional tea-party with sandwiches, sausage rolls, jelly and then cake, but in fact on arrival each child was given the choice of three hot  meals: chicken nuggets, sausage, both with chips, or pasta with some sort of tomato sauce.Mary-Ann had to provide the cake, which was brought in with the candles lit for Joe to blow out.  Then they all had ice-cream, a photo on the balcony, and a party-bag which included a piece of cake.  Joe was very happy with it all, and we got to know some of the children whose names have cropped up regularly, and to take to their Mum's.

Joe and Sally arrived in time for the party, but there were more than enough of us to supervise the play part, so they walked George and returned in time for Sally to entertain the children while they ate their tea, just by talking to them.  She is so gifted at communicating with little children.  Our two adore her, and I suspect several of the children at the party would have like to take her home with them.

Sunday was Father's Day, and we stayed home from church to be with Joe and Sal and to cook lunch, which was wonderful.  Mary-Ann made the morning tea for Butler Dave, whose job it is normally.

I have an appointment to see my surgeon (I belong to one at last!) on the 29th.  I have not had any results, and don't want to attempt to get a preview from my GP because the important thing is going to be what needs to be done, rather than what has been found.  So I am just enjoying being able to get out in the garden, and taking Joe to school, and James to town on Grandma Days.

We have re-organised the messy back porch, put oiled wood worktop round the butler sink and facing the outside door, and shelved to the ceiling on that wall to give lots more storage.  Bob and Sheila had done something similar with their boiler room and it was so impressive that it motivated us to get on with ours.  Now we need to get some shelving up in the kitchen to relieve the worktops of all the drink-making stuff - tea, coffee, camomile, chocolate, Splenda, sugar, Lady Grey, Chai, ground coffee (at least three sorts!)  At present we have a lot of duplicates, having unpacked more of the Knee's boxes, so our workspace is extremely cluttered.

It's raining!  We have had a few showers in the last week, but nothing to soak into the ground which is bone dry as far as you can dig.  The little geraniums and other plants transferred from cossetting in the greenhouse are looking very sad and some have died.  I finally started hosing them, but unless you are prepared to stand in one spot for about five minutes and then move on to the next spot it does very little good.  I had a good afternoon planting out today, and this rain is perfectly timed.

I couldn't have gardened yesterday.  I have been very poorly following a colonic endoscopy last Tuesday (camera job).  16 polyps were rmoved and there was one that was too big.  When the surgeon read the report he got the liaison nurse to ring me to say he wanted another CT scan without waiting for the biopsy reports, so that doesn't sound good.  It is booked for next Tuesday, our little Joe's birthday, but I should be home in time for his birthday tea.  His actual party is at Planet Zoom on the following Saturday.  Anway, as I was saying, the procedure last Tuesday week left me making numerous visits to the loo without much result.  Yesterday I really thought I was obstructing again.  I rang the nurse who oversees the follow-up, but unfortunately couldn't speak to the one who knows me.  I was told rather condescendingly that if I wasn't vomiting and was passing anything at all I couldn't be obstructed.  I said I understood that, but was anxious to avoid a recurrence.  She said if I was that worried I should see my GP.  Ah well!  She was right anyway, because at 5.0 0'clock this morning everything returned to normal, (normal for me, that is.)

So I am back to making the most of each day, trying to pack in as much as I can because I know if they want to start chemo again, or even surgery, I shan't be doing much at all for a while.  I just hope I can squeeze in my holidays.  I wonder if I could insist.  I don't think I can go back to being 100%  compliant and passive again.  Or perhaps I can, they are very persuasive.

We did it again!

Actaully we went to Bangor because Bob was being interviewed for Radio Wales about Diccon's book, Fox in the Attic, which has just come out in a new edition having been out of print for 20 years.  We sat in the car-park of a social club and listened to him (he was very good), and then browsed round Dunelm, Tescos and finished up at our favourite garden centre by which time of course it was time for lunch.

Yesterday we went to Seiont nurseries near Caernarvon.  We last went there with Rose but the memories were all good.  Dave's idea in suggesting it was their millburgers at their Mill Cafe.  Sheila and Bob wanted to look again at large pots to go under the front windows on a bed of slate chippings, where Sheila has decided not to battle with the strip of garden any more. As well as having a very nice leisurely lunch we did a bit of shopping.  We bought strawberry plants with fruit already ripening, and Bob and Sheila got carried away with a thornless blackberry, a gooseberry bush and numerous kinds of thyme for the herb  garden.  Then we had to get them home!





If you  look carefully you will see that the parcel shelf travelled between my knees while Sheila was in control of the blackberry.

In the evening Dave went with Roy and Dav to Dav's Rugby training.  He is out of action for playing at the moment with an ankle injury, but had some physio.  Sheila, Bob and I had a peaceful evening watching TV which was walks in the Gower and then canal walks in Avon and Kennett, followed by the history of the restoration of the inland waterways.  All very interesting in view of our booked holiday with Steve and Kate on the Four Counties ring, and a great way to walk dozens of miles!

The weather is not good although so far it is not raining today.  Selfishly, I am hoping a share of the rain we have been getting is falling on my garden in Norfolk!







Clogwyn

We are at Clogwyn with Sheila, Bob and the family.  As I blog, Dave, Rachie and Sheila are cooking curry for our Saturday night meal.  We have had a good day, starting with a visit to a 'Greenshoots' event in Penrhyndeudraeth (or something like that).  This was for swapping seedlings, cuttings etc, and also an opportunity for local ecologyd and craft groups to share their enthusiasms.  Sheila took lovely tomato cuttings which went very quickly.  I was shocked at some of the weedy, neglected offerings, but hopefully their owners went away with better examples of plant care!  Dave bought Shitake mushrooms and I bought a very nice sunhat made out of old clothes and had a go at braiding, making a few loops of a four-sided rope.  We went on from there to a pine shop that we had all enjoyed before, and where S and B had previously bought lovely pine dressers etc.  We think it has chaanged hands because it now has very little natural wood, but loads of painted or distressed pieces all of similar taste.  As Sheila said it was very 'get the look', and at inflated prices.  Not even a cup of coffee this time either.

We went on to the Oriel gallery where we had a very nice cup of coffee and Dave drooled over the cakes.  (What has happened to him since he became diabetic  - these days he is always hungry, finishes his plate of food and demands puddings.)  We enjoyed looking at all kinds of pictures and ceramics, some wood-carvings and a family's collection of china bought over three generations just because they gave pleasure, not because of their rarity or possible investment value.  That was refreshing, and made us realise that our instinctive dismissal of much of the art was because it simply did not give rise to any feeling of pleasure or desire to possess to live with.

We then had a salad lunch at the pub up the road and came home via Tesco with our requirements for the curry.  I have managed to hitch my laptop to the Hughes wireless, thanks to son Joe's very clear instructions for finding a lost encryption code, and have been able to download a document in Publisher for Bob, save it as a pdf and present it to him on a flash-drive.  We both feel very clever!

Yesterday was Rose's centenary.  We celebrated with her favourite meal of fish and chips overlooking the sea at Barmouth, then took her favourite drive into the hills to see the bluebells.  We also put roses on the grave and admired the trough of pansies which have over-wintered there.  Sheila says she must look after them as it is very bleak and windswept up there in the winter.

Young Tom wants to set the table.  Far be it from me to discourage him.

We are in a season of unseasonable weather.  Our temperature was 24 today, hotter than the mediterranean.  The boys have been having a wonderful time outside on the trampoline and in the paddling pool.  We all had a walk the other day down through Scott's meadows to the Fen, where the boys played Poohsticks, or rather Poohboats.  Last evening we all went for a curry at the Akaash.  The boys behaved perfectly and enjoyed the food.  James's rather loud comment that the waiter was all black, white and brown was offset by his equally frank opinion that the food was yummy.

We managed to find some child-sized garden tools.  The boys seemed to be pleased, although I suspect they miss the opportunity to 'accidentally' bash each other. 

Today Dave and I have had lunch with Barbara at The Park, and a BBQ wih Dot and Rodney this evening while child-sitting for MAry-Ann and Dom.  It was a change to be with adults although I did get to read a story to cover the slightly tricky moments just after M and D had left.  Like adults we shall also have to stay up late - at any rate until M and D get home - as we would never hear the boys from the annexe.

Now we are six

Well, it happened, and the Knees are now installed at number 38.  The boys have settled in remarkably well.  JAmes went straight into his first real bed, calls it his 'cosy bed' and is no trouble to go down either at night or for his day-time nap, although he wakes in the night quite frequently and hasn't quite got the hang of getting himself back to sleep with his collection of dummies lurking under a duvet instead of scattered around his cot-bed mattress. 

Mary-Ann and Dom have unpacked most of their boxes although some will stay packed until such time as they go back to Devon or have their own place here.  We don't need two of each item from their kitchen, although we could do with their mugs, which haven't materialised yet.  So far the enormous Knee sofa is in our lounge; Dom still thins it will go upstairs, but his back is playing up and I have visions of half the family being stuck permanently upstairs and the rest isolated downstairs, with the entire stair-well full of sofa. 

So far the boys have joined us in the annexe bedroom every morning for fun and stories.  Mary-Ann says they are all still on holiday because she is, so nothing is quite normal yet.  I guess when she has to be out of the house by 7.0am and Dom has to get James to nursery by 8.0 and I have to walk joe to school by 8.45 things will be very different.  We have also been eating together at mid-day and 5.0 pm, which will again be difficult when MAry-ann is at work and Joe is at school. 

I have a persistent 'cold' which is probably rape allergy with and infective component.  I have had three different antibiotics, one of which was from the back of our medicine cupboard and was 12 years out of date!  None of them worked very well, nor did the anti-histamine, but I am now on steroid nasal drops properly presribed by my GP and there is a definite improvement.  I am still growly, snuffly and a bit deaf in the mornings, but it doesn't seem to make any difference to the boys' enjoyment of their story and that's all that matters.

Joe has been helping me plant up the hanging baskets and hay-basket.  He concentrates reamrkably well and seldom gets fed up before a job is finished.  He is desperate to do reall gardening but is lethal with the full-sized rake and spade.  I walked all round the town on Saturday looking for a child-sized garden tool set., and yesterday we tried Tesco and Roys, but no luck.  We have seen them in the garden centres, so will have to take a trip out somewhere soon, otherwise I foresee serious injury, most likely to James.

I am still Freegling.  Today I put our collection of maps on our local Freegle site and had a response within a couple of hours from a couple who are home-schooling their children.  So much better than binning them.  Mick and Iris came today and I was able to off-load his old school reports, Hammonds Gramar School panoramic photograph, and pictures of him at various stages.  Mary can have her package when she comes on Wednesday.  I have told them all they can throw them straight into the bin if they want to, I am just not prepared to throw away other people's memorabilia.  Joe was quite excited to get all his old music exam certificates and school reports, but then it turns out he has kept every letter ever written to him so he appears to have an inheirted inability to throw anything away.

We had a wonderful weekend in Stone.  Dave and Joe cooked meatballs on Friday evening and I believe some members of the party played some games on the Playstation.  I am sorry to say I missed it all, put it down to the bug I was incubating.  I slept all evening and most of the night.  I was below par all weekend but managed to enjoy and take part in everything.

On Saturday morning we went into Stone and had a full English breakfast at The Lounge, then Joe had to go off to rehearsal and the rest of us had a lovely lazy sleepy afternon.  The Messiah was fantastic. The soloists were very good but of course we were mainly interested in the choral pieces, which were all we had hoped for.  I didn't cough at all.  Joe enjoyed singing in it, but is mightily relieved to have some Sundays to call his own.  Afterwards Liz and Michael came back with us and we drank champagne and ate crisps and chocolates.

On Sunday morning we went to Trentham Gardens, walked through all the shops and bought a dwarf cherry tree in the garden centre.  It is already planted in the fruit cage, so hopefully we will have some eating cherries as well as the Morellos, maybe not this year, but soon.  It would be great if the boys could pick some this year!  We had Staffordshire oatcakes for breakfast, with bacon, mushrooms and cheese.  Jodie and Ben brought Krispycakes doughnuts during the afternoon and in the evening we went out for a curry.  Joe and Sal's favourite curry house has re-opened and it is fantastic.  Friendly prompt service and delicious food that didn't leave us feeling bloated or heavy.  I don't know how we managed to eat so much without suffering but we did.

I have had a cough for well over a month.  10 days ago my GP gave me anti-histamines as we both thought it was an allergy affecting my sinuses.  She also gave me a scrip for antibiotics 'just in case' it didn't get better.  By the time we got back here on Monday I felt really congested and unwell and went to bed for a couple of hours.  Dave fetched my prescription and I started the antibiotics, which have helped the cough and the sinuses, but now Dave has a cold, feels achey and stuffed up, and it is clear that I have succombed to a fresh infection on top of what I had.  I haven't resorted to bed again since Monday, and we did quite a lot of useful gardening yesterday before the weather broke.  Dave has got the new shower ready for tiling now, and I have found a Freegle home for another lot of bed-linen.  On my second attempt  I have even found a Freegle bed-guard to tuck in under Joe when he moves into his new room.  At Mary-Ann's suggestion we have left the design of his room until he gets here so he can take part.  It is very plain and white, a bit like a cell, but hopefully he will enjoy making decisions about it.

I realised when I opened up my blog that I haven't taken any photos of the garden for ages.  It's dark now, but when we get some clear daylight I'll remedy that.  I have some broad beans up, and have had to put a half tree-guard over them.  I have never known birds to eat broad beans.  We have to cover everything.  We have bought a new net for the top of the fruit cage so I am cutting up the old one to cover my raised beds.  Dave is gradually renewing the sides which were bulging horribly, and I got him to leave the posts sticking up about 3" so I could drape the net tightly over them.  He has also made me a couple of foot-square gardening beds.  I have lost my foot-square gardening book, but most of it is on the internet anyway.

Two things are happening this weekend.  1) Mary-Ann arrives this evening, Thursday, as she has to personally attend her new school for her CRB check tomorrow.  The end of her term coincides with the end of term here in Norfolk, so there will be no opportunity to do it after they have moved.  Little Joe has a place at Toftwood Infant School, so at least she will be able to make use of this visit to go and see the school and the Head.  Unfortunately Joe will go in cold at the beginning of next term. 

2) We are going to Stone tomorrow to hear Joe sing in Handel's Messiah at Lichfield Cathedral.  Bless him, he decided to sign up to this when it ws not at all sure that I would be fit enough to attend during my chemo, so this event is very precious for us.  It has been difficult for him to fit in the rehearsals, but he has done it, and we are really looking forward to the performance on Saturday.  Mary-Ann is going to join us in Stone when she has finished all her appointments tomorrow, and will do the other half of the journey home on Saturday, which breaks it up for her although the total distance will be greater. 

We should have spent this week working on the house, getting ready for the family.  In fact it has been a gorgeous sunny week and we have been outside every afternoon re-making the raised beds and generally tidying up and pottering around enjoying the sunshine.  Mary-ann's room is ready for her, otherwise the house is in chaos.

A really good week in the garden if not the house.  I have been able to get out in the sunshine and weed the bed round the patio.  It was full of celandine, I suppose left over from the damp area round the pond.  They are dear little shiny green plants that would soon have had bright yellow flowers.  I love to see them in ditches and other damp places, but they are greedy and spread into a dense mat that doesn't give a chance to the other plants.  Their slender white stalks go down several inches into the earth before connecting with little light brown tubers, and these multiply every year forming a knotty clump that breaks up and sprreads over a wide area when you try to dig.  I'm not silly enough to think I have winkled them all out, but I have attacked about 98% of the leaves.  Some broke off so the tubers will sprout again next year, thumbing their little brown noses at me, but I feel I have done a job akin to clearing the bedrooms and store-cupboards on my garden.

The broad beans are in.  The ones I planted rather late in the autumn are few and far between - six of them to be precise.  Let's hope this lot does better, because we have extra mouths to feed this year.  I have planted early peas along the picket fence in the boys garden by the playhouse.  I hope they'll do well as they will love picking and eating them - if Dave doesn't sneak out after dark and pop his way down the row!

I have a few pots of flower seeds in the greenhouse, in a propagator.  I hope I can be organised enough to prevent them overheating and dehydrating this year.  I have no excuse now.  I have only bought a few fuschia and geranium plants for my two baskets, and hope to get cuttings from them for the hay basket.  I have been scrapbooking our first holiday in Ireland in 1996, and among the photos were some of the garden and the pergola.  I don't think it has looked as good as that since, so I have a lot to live up to.

Yesterday was scrapbooking day.  I am trying to get my own album up to date, having spent so many workshops making pages for the boys' albums.  I am a bit overwhelmed by all the envelopes of holiday photos in the cupboard - I had forgotten Malta, and Alderney, and Denia, to say nothing of the three holidays in Ireland and all the times in Wales.  And I haven't started on transferring all the slides from the 70s onto computer - Dad's as well as ours. 

I took Barbara with me yesterday.  She gets lonely in the house on her own, and needs something creative and absorbing to get stuck into.  She loved scrapbooking, and was brave enough to bring her wedding and courtship photos.  John died on Boxing Day and I think she did really well not to get tearful.  Vicki gave her a lot of help, and other people from church talked to her, so by the time she had had cottage pie with Dave and me she had had a lovely day.

We have both had colds this week so haven't felt much like doing house-clearance.  However, yesterday I spent the afternoon in Joe's old room which we have been using as a store for bed-linen, towels, sewing stuff, suitcases and all my old medical books.  I have finally disposed of my old lecture notes from med school.  I was very impressed by how much I must once have known, but enormously relieved to realise no-one is ever going to expect that of me again.  The text books will have to be subjected to Dave's electric saw and his pot-bellied stove in the workshop.  They are mostly out of date, but not enough to be historical.  It feels like getting rid of the basis of my adult life, but I will be glad when it is done.  I loved my work as a doctor, but I am glad to have been relieved of the future humiliation of knowing I am doing it badly.

Dave is gradually getting to grips with the new shower.  We have ordered the tiles from Topps, and some for the kitchen too.  I would really like to get the kitchen done before the family come because it is the centre of the house and will be difficult to do once we are all living here.  In the shower the floor is now repaired but the wall of the bathroom needs some attention because we decided to remove the bit of wall above the door of the shower.  It would have been an anomaly as the entrance will now be a foot further out into the room.  Needless to say a bit of bathroom wall came away with the unwanted bit, so it now looks like a complete decoration job.

Little Joe is having really bad nights with nightmares and not wanting to sleep.  Dom and Mary-Ann are getting exhausted, and Viv and Roy have had the same problem for the two Saturday nights they have stayed over to babysit.  It is hard to say whether he has picked up on the forthcoming changes, even though he hasn't been told yet, or whether it is something at school unsettling him or even the TV at the after school club.  He started off saying the nightmares were about Baddies, but now says he just doesn't want to go to sleep.

I still haven't got a very clear idea how to make his cabin bunk into a space-ship.  I am hoping once I have the room cleared it will all come to me in a flash.  Is space travel conducive to peaceful nights, I ask myself.

I have an appointment with a surgeon next Monday, rather sooner than I expected.  I assume it is just the routine follow-up.  I hope I might have the opportunity to ask about the expected side-effects and different function following colectomy.  I suppose they have thought I should know all the answers to that, but even if I did it is not the same as living with it.  I suppose I am getting used to it, but having to go after every meal makes you think twice about a day out or even an evening meal.  And I am rarely completely comfortable.

Trying to be normal

I have no excuse now for taking it easy, being grumpy, precious, letting the world pass me by.  Things that seemed like real achievemnts when I was the little old lady with cancer now seem a bit pathetic. 

One major problem is finding some way of disposing of all the stuff we have sorted out and have no room for: furniture, clothes, bric-a-brac.  After all my freegling efforts I still have large bags of scraps of material, and some larger bits.  I thought there was a re-cycling equivalent of the rag and bone man, but even Kate with her weighed collection in aid of the pre-school now says 'no rubbish.'  Charity shops have become very fashionable and I feel guilty about giving them anything that I don't want to wear myself.  I haven't heard of a jumble sale for years, and the wheelie bin isn't big enough.  I confess that there is another factor now: I am a bit reluctant to dispose of anything that I might possibly wear or adapt, now that I have a future!  If I followed up on this I would put back in the wardrobe all the stuff I retained at the last major turn-out, which would achieve nothing!  I can't even work on the theory that anything I didn't wear last year is not going to be required this year.  Last year was a bit of a non-event.  I don't think I took a summer dress out of the wardrobe; I was cold all the time, and was warned not to let the sun shine on me because of the chemo.

It sounds as if I am moaning about having my sentence remitted.  Of course I am not, it is just taking a little time to adjust.

We went to Topps Tiles in Norwich yesterday afternoon.  We have more Tesco Clubcard tokens than we need to tile the new shower, so thought we might tile above the kitchen worktops.  I confess to being bewildered and a bit disappointed by the choice of tiles.  When we had the annexe bathroom and kitchen tiled for Mum in 2008 I really enjoyed looking at everything in the local tile-shop, and we were spoilt for choice.  This Topps showroom is full of natural stone mosaics, brilliantly coloured glass tiles, and enormous marble slabs.  Hardly a blueish, four-inch tile to be seen!  We have another problem.  The idea is to put a shelf above the tiles and move all the tea, coffee, salt and pepper, daily pills etc up there.  If it is too high I won't be able to reach it, so we settled on 30cms as a good height.  Some of the giant tiles are 30cms if laid sideways, but in bed this morning I had the depressing thought that a 30cm high shelf will prevent us opening the breadmaker.  Back to the drawing board.

Mary-Ann and family were home from Friday until Monday.  It was lovely to see them and the boys were a delight.  They even played outside for nearly an hour on Sunday.  It was bitterly cold, and they found watering cans with rainwater in them, so got wet.  James had to come in and get changed into a pair of shorts, but then went out again and dug in the sandpit with Joe quite happily.

Mary-Ann went for her interview on Friday and to her surprise got the job.  She was convinced that she is too expensive, and that no Head with any sense would consider employing an ex-Head.  However, they loved her class teaching and behaviour control, and said she interviewed very well.  Soon after she heard that she had the job she and Dom decided that they would follow their plan through and come to us for a year, then review the situation.  This means it is full steam ahead to get the upstairs ready for them, hence the panic about the clothes.  Dom is convinced they can get their enormous settee up there, in which case the living room downstairs will stay the same.

The Path to Adventure takes a twist

Most of my blog followers will already know the life-shattering news I got at the oncology clinic yesterday.  No mass in the lung, no recurrence seen anywhere, no chemotherapy planned, no surgery, no prognosis sought or given.  "It must have been an infection," said the oncologist, "although it looked like a secondary and nothing like an infection."  I just looked at Dave and said: "Prayer does work," and he said: "Yes, you've had lots of prayer."  We consider it a miracle.

None of the questions I had stored up to ask had any relevance, like would he give Mary-Ann and Dom a letter recommending them to have flu vaccine to protect me during my next chemo, and what was the time scale for any treatment, and could we take a holiday out of Norfolk this time.  All that is planned for me now is a regular follow-up by the surgeons, and I think he said that would start in three months time.

Thank you to all who have shared our news with such joy.  I feel loved and valued and in touch with so many people I have neglected over the years.  Your responses to my musings and grumbles and plans have been so positive and helpful.  I hope I can live up to them.

We are so thankful to God for giving us this relief from all the anxiety and worry about the future.  We don't yet understand what it has all been about in his plan for us, but one thing we have learned is that he is more than capable of working it all out, and that he wishes good for us.  The route we take is in his hands, but he walks it with us and as long as we can trust in that it remains an adventure, not a punishment.

Several people have commented that we must be walking on air, delirious with happiness.  Because I am trying to be honest in this blog I have to put down that it isn't quite like that.  I feel a bit flat to tell the truth, without direction and suddenly tired at the thought of coming out of my life of indolence and beautiful thoughts!  There, now I am laughing at myself, so that is a good sign.

I suppose I have still not quite got the hang of being happily out of control.  The last ten months have been a very different interlude in a life that has been marked by striving (both for success and understanding,) and never being quite good enough.  Since I gave up work and my car, and shed the financial burdens of being in practice, I have started to appreciate the pleasure of having time to idle.  Until December I was engrossed in my little books, painting my watercolours and putting words together.  I have enjoyed writing down my reflections in this blog, scrapbooking, doing a bit of Ancestry on-line, watching Homes under the Hammer while doing the ironing.  Then since Christmas we have been trying to sort the house in preparation for Mary-Ann and Dom to come to live with us.  I have decorated the annexe bedroom for us, and disposed of large amounts of material, wool, photography magazines, furniture and clothes.  We are about half-way through being ready for them, although Dave has found not only rotten floorboards but a couple of rotten joists under the shower which have to dealt with before we can install the new one.  Underneath all this was the knowledge that my time was probably going to be short, so I created my family and friends group e-mails, started to make a file of utility information, contacted the NHS pensions office to get an idea of what would be coming in for Dave after my death.

And now?  Like everyone else, I don't know how long I have to fill my time.  What does God mean by the change in prospects?  What knowledge and skills have I learned that I am meant to be using in the indeterminate amount of time left at this end of my life?  I had thought the future was going to be focussed on the family, helping with childcare, enjoying the development of young minds and bodies, reading stories, fetching from school.  MAybe that will be it, but the plans are back in the melting pot, and Mary-Ann and Dom have even more significant decisions to make than we have. 

Dave is much more practical.  He sees the grand clear-out of possessions as something long overdue, and an opportunity to decorate and renovate the house.  He wants me out in the garden, fulfilling some of the neglected plans we have had.  He never worries about money until the pot is empty, so he doesn't turn a hair at the cost of all this renovation.  I am sure he is right, and that investing in upkeep is the best use of what we have.  So long as my pension keeps coming in we can manage, and when he finally accepts retirement we still have the house as our security.  So he is on the right track, and I just need to keep living each day in thanksgiving and joy.

It will take me a little while to get used to the idea of a future.  Rog just came with a huge bunch of tulips, a promise of springtime, and a card from Sam saying 'today is the first day of the rest of your life.  Enjoy!'  Rog had a life-threatening heart condition a couple of years ago, and he identified with my muddled thoughts completely.  It makes me feel a bit less pathetic.  I expect I shall look back on this blog post and wish I had never written it.  I have said enough, anyway, so I will go and hang out the towels.