Chemo 1, Round Three

I have been dreading this new chemo, I suppose because it has to be applied for on the Cancer Fund, and is different from the usual cytotoxic preparations.  I kind of thought as this was the third attempt to make an impact it has to be more unpleasant, but it wasn't.  The one that only takes a few minutes was given by the nurse while I was chatting to the palliative care doctor, and I didn't even know I had had it.  The next drug took an hour to run through, cautiously in case of reaction but there was none.  No sore arm, no coldness, no tingling.  The expensive one, Avastin, took an hour and a half but will be less after the next one if I don't react, and I didn't know it was going in.  I had thought that the short infusion had to be done weekly, as that is th e usual regime, but I haven't been written up for that so don't go back to Weybourne Ward  for three weeks.  There is just the matter of getting the fluid drawn off often enough to keep me comfortable, and that should get less on the chemo.

Hooray for chemotheapy!  And I never expected to write that in my blog.

I have one little niggle - which seems a bit picky in the circumstances: why did I have to have a second session of chemotherapy of a kind that makes you feel it might be better to just die, in order to develop secondaries to qualify for me for the regime I started today.  I have to say it feels downright punitive!

I had 6.5 L drained off again on Friday, which enabled me to spend Saturday morning at Splash with the family (No, I didn't go in - they don't allow hippos!)  We went on to Mary-Janes at Cromer for fish and chip lunch, and for tea Mary-Ann and I demolished a dressed crab on slivers of toast.  (I didn't try too hard to find out whether it was low-fibre.)

On Sunday I was able to take my turn leading the worship at our Early Service.  Our good friend Ian took over the intercessory prayers because I knew the time I could stand up was limited, and it worked very well.  It was another of my planned things that I have been able to do, so I felt very blessed.

Now to catch up with some pics.

 Taken on May 25th - 2012, not 1969!










                                                                                                               

We got home today to find two stark naked boys in our garden, full of joy and mischief having been sent out to play fully clothed, and having found clothes were not really necessary for the bath they had decided to take in a very dirty paddling pool.  JAmes was especially excited that they had washed each others hair with the watering can.

Mary-Ann and Dom had giggled from the kitchen window, letting them have this little adventure which is so unhygienic and rebellious.  How else do boys get to be boys these days?

It has been a funny old week, but things are a lot happier and calmer than they were last week at this time.  I have accepted that short of a miracle I am into palliative care, and in a funny way this makes it easier to enjoy what I have and accept good days as a bonus.

When the first lot of fluid was drained off the oncologist made arrangements for the specialist nurse to ring me 6 days later to see if I needed doing again.  I did, and had 4.7L drained after a week.  That was when the doctor detailed the risks of frequent drains and said he didn't want to see me for at least two weeks. After a week I was very uncomfortable but still trying to be cooperative and appreciate that the delay was to protect me.  By the Monday I was virtually bed-ridden, in constant pain and very tearful.  I was cross with the tears because they helped nothing and I just felt I was descending into the realms of self-pity.  I didn't verbalise this then, but in retrospect I think this was when I fell into the divide between palliative care and active treatment.

How do you make symptom-control a priority when the doctors are still talking about expensive interventions and taking no risks in pain control?  Psychologically this is a bad place to be.

Anyway, my tears ended the pretence and pussyfooting, so that when I broke down while speaking to the Acute Oncology Nurse on the phone she actually said:  'If it needs doing, it needs doing.  Come and see us this afternoon.'

When I got there, there was no mention of waiting the full fortnight, they just got on with it.  I had told the specialist nurse I needed to talk about pain control, so she hung around for the whole session, and between tears and laughter and getting on with the job in hand we achieved a sort of plan.  I can't believe how important it was to have a plan.  Without it you are just starting again with each new symptom.  I was quite proud of myself when I managed to explain that I felt in limbo, not sure whether I was meant to be sitting back and letting them supervise my dying or whether I was meant to be squeezing the last drops out of life.  (No, my verbalisation was not that neat, but somewhere in the back of my mind this was the truth behind my halting sobs.)

I left 6Litres lighter, with a bottle of oramorph and an appointment to see the palliative care doctor on the Wednesday.  The oramorph made me sick, but the new doctor changed me to the next opiate in the list, together with an anti-emetic which is actually an anti-psychotic!  Well, maybe I am a bit mad, but it stops me feeling sick and that is the important thing.  I had to double up on the painkiller, but now have a reasonable control, so much so that I was able to get to the Norfolk Christian Writers Association day in Norwich yesterday, (Complete with bottle of opiate tied up in a freezer bag.)  I was a bit sleepy, but it was good to be there, with opportunities to talk to other writers and learn from the experts.  I even managed to sell  5 of my books on the bookstall, which has to be good considering publication date is Monday week!

Before I forget, if anyone wants a copy, please buy from the publishers rather than Amazon.  Postage is free and it is actually likely to be quicker from Running Hare as Amazon will have to source from them.   They use Paypal, which I find really easy.  The price is £5.50 and I have to say the books got a really warm response from yesterday's crowd.

www.runningharepress.co.uk 

This coming week I hope to be able to 'sit' James tomorrow, meet with Helen about Early Church on Tuesday, spend time with my writing buddy on Wednesday and if necessary fit in a fluid drainage session later in the week.  I have finished my 'love blanket' and once I have finished getting together my papers for the accountant my conscience will be pretty clear.

Joe and Sal came for the weekend to help out with Little Joe's birrthday party - which went really well - and for Father's Day.  Dave has been a star through all this, willingly dropping everything to get me to the hospital and waiting on me hand and foot.  Because mornings seem to be my worst time he has even been bringing me toast in bed, as well as doing all his usual cooking and picking up various tasks around the garden that normally fall to me.  Mary-Ann cooked lunch today before Joe and Sal left, fajitas for Dave who normally does a roast even though he doesn't enjoy them.  Great family.

Glad to be alive

Sunday morning, 5.30 am
I am having a great weekend.  On Friday I lost a stone in weight, yesterday I gardened in the morning and then we all went out in Big Red to my writing buddy Angela's book launch in her garden at Wereham, near Downham Market.  Today we are going to the early service, having a big brunch with Big Joe before he goes back to Stone, then maybe a trip to the coast for chips.  Oh yes, and on Friday I was told the cancer is active again.  I need to fill in some stuff about the last month to make sense of this!  Apologies to my followers who are not interested in medical case histories.  This entry is mostly for me, to record what has happened and start me off on some thinking.

I was short of breath before we went to Wales, and feeling a bit suffocated when I lay down.  The GP listened to my chest and found nothing, but put me on amoxycillin for my sinuses.  It seemed a bit better.  When we got back from Wales I had put on half a stone, and my tummy was noticeably extended.  I haven't worn trousers with a waistband since.

On the Tuesday after the early May bank holiday I saw my GP urgently and he faxed my surgeon with a provisional diagnosis of adhesions causing partial obstruction.  The following Monday I saw the surgeon at Cromer hospital, (too uncomfortable to take in a look at the sea while we were there,) and he also muttered about adhesions, said there was a bit of fluid which he had previously seen in cases of adhesions, and requested a blood test and a further CT scan.

I assumed the scan would be urgent, and so began  the worst period of this whole cancer journey.  Day by day as I waited I got bigger, heavier, and more tired.  The worst thing was that I could only relive the pain in my back and abdomen by lying completely flat, so from last Sunday I was virtually bed-bound, anxious about thrombosis but unable to grin and bear the pain of being vertical.  I slept a lot.  On Monday I rang the surgeon's secretary, only to find she was on annual leave.  I left a message on the answerphone and received my scan appointment for Tuesday.  You have to sit in the radiology waiting room for an hour drinking a litre of contrast medium to make the scan clearer, but after ten minutes Dave had to ask if I could lay on a trolley.  After the usual trouble with my vein, for the intravenous contrast, I had the scan and the radiographer told me the result should be with my consultant later that day or the next day.  Home to more bed.  Also the surgeon had mentioned I might be more comfortable on a low-fibre diet, so I was eating very little.

On Wednesday afternoon Dave left a message on the surgeon's answerphone to say we had been led to expect a phone call from the surgeon as soon as the result was through, and that I was extremely uncomfortable.  A stand-in secretary phoned him back and promised to leave a note on his desk.  At this stage we were still working on the assumption that I was obstructing.  I felt physically weak, in pain and very tearful.  I had less and less faith in the diagnosis.  I was at least ten pounds heavier than my normal, in spite of eating hardly anything, and self-examination supported a diagnosis of fluid in the abdomen.  (Ten pounds is an awful lot of poo!)

On Thursday Mary-Ann was at home, and started to bustle.  "You've got to get to hospital, Mum.  I am going to ring the doctor."  My GP rang me later in the morning and I told her the sorry tale, together with my conviction that we were dealing with an accumulation of fluid known as ascites.  She chased up the scan report via the radiologist and came back with the news that I was right,  there was ascites consistent with metastases (secondaries).  She had made me an appointment in the oncology department to have it drained off the following day.

So, back to oncology.  It was easy to say I was glad to be rid of the oncology department when I felt well and my scan was reported normal, but on Friday it was the best place in the world.  I arrived on a stretcher, so I could lie flat, and the ambulance-men were very patient as we trundled back and forth around the cancer end of the Norfolk and Norwich, looking for someone who was expecting me.  Eventually we found our allocated spot, a young doctor I had seen once before put in the drain and a familiar nurse from Weybourne Ward repeatedly emptied the bag into her measuring jug, then prodded  me and turned me on my side and encouraged me to have a wiggle until no more drips would come.  She totted up the total to 7.125 Litres.  It took just under an hour.

My poor bowel had pretty well gone to sleep over the previous week so I was given three lots of medicine to get things working again.  This is still in process, so I am not completely comfortable, but I can sit, stand, garden, knit, read stories and talk without weeping.  Today we have blue sky again; a day to be savoured and shared with enjoyment.

The most amazing thing was that my oncologist, who has irritated both of us to the point where Dave wants to punch him, came in while I was still flat on my back and we had a really productive conversation.  He explained that he would be offering second-line chemotherapy, and how difficult it is to get the drugs into the peritoneum (Slippery bowel covering) because of the poor blood supply.  The treatment lasts six months again, so it would be the third year in a row half-filled with chemo.  When I said it was a long time out of an already shortened life-span he agreed, and said how sorry he was that the cancer was back.  I felt sorry for him, and to cheer him up I told him I was getting on with things and had a book coming out at the end of next month.  His face lit up and he wanted to know all about it, then went on to ask me how long ago I retired, and we parted on very good terms.  What a turn-around.  It occurred to me later that it must be very difficult for them to know where patients are coming from in their cancer journey unless we tell them.  There is a big divide between quantity and quality of life that is very easy to slip into, and at this stage I think we have to get the balance right, and make sure those treating me know what our priorities are.

I have all the 'gen' on the three drugs under consideration.  The treatment would be either all three or two of them.  I haven't read it yet, but will do before we go for a discussion on Wednesday.  The doctor assures me that we won't need to make a decision then, we can have a few months grace if we choose.  It would be nice to have a relaxing summer, and there are various things on that I don't want to miss.  We have a lot of thinking to do, and as much living as we can cram in.

All Clear

It is 8 days since we had the good news that my CT scan showed no recurrence or secondary spread of the cancer.I hadn't really made provisional plans for this eventuality; it seemed so unlikely.  We hadn't even stocked up on bubbly, and had to stop at Tesco on the way home.

I have had some brilliant reactions from friends and family far and wide, and feel quite guilty that I seem to have taken it in my stride.  In fact my reaction has been more like that of my oncology consultant, who came out into the waiting room to call us in, waved towards the two chairs, shook hands and asked me how I was before sitting down and saying in a very flat voice: 'Well, your CT scan was fine.'

We looked at each other in a sort of bewildered way, all our questions and comments rendered irrelevant by that simple statement.  I managed to gather myself enough to ask for specifics about the liver, which has been enlarged for some time and seems to be getting bigger.  He read me the appropriate part of the report, and then went on to talk about the side-effects of the chemo, past and continuing, even comparing it to the chemo used for breast cancer.  What was all that about?  He certainly didn't show any inclination to examine my liver, in fact I can't remember whether there was an examination couch in the room.  It convinced me that oncology is not about patients' lives, but only about their life, in particular how long it can be extended.

Anyway, the good thing is that for the moment I am free of the cancer department, and returned to the care of the surgeon.  That will undoubtedly mean follow-up colonoscopies, and probably removal of the polyps that I insist on making, but I don't dread that.  I trust the surgeon, who has been very positive and honest about what he can do.  I suppose this hands-on approach, that makes us partners in a venture that is expected to work out, suits my personality better than pouring poison into my circulation in the hope that it will kill more of the baddies than the goodies.  It's about control.  I don't like to think of myself as controlling, but my mother was, and my daughter admits that she is, so I guess I am coming round to it.

What happens next?  My picture book launch is to be around the end of June, hopefully in our newly refurbished and redeveloped church building.  I hope the printing process is going to plan.  My brother Mick has been in France, and now we are in North Wales with Bob and Sheila, so I am not sure whether there are any hitches there.  The novel, started as a project to give me something constructive to do during the chemotherapy, is as near finished as I can make it without input from others.  As I am blogging, Sheila is in the lounge at Clogwyn reading my first entire printed copy.  It isn't an exciting book: no adventure or crime detection or even major domestic occurences,so I suspect she may be found sleeping over my loose-leaf folder .  I am making myself wonder whether it was actually worth writing; I would have given up months ago had it not been for my writing buddy Angela who has encouraged me every step of the way, and insisted that my genre is legitimate.

The weather is pretty awful, and has been for a couple of weeks now, here and in Norfolk. At home we have a hose-pipe ban which we are told will go on until December, but it is little problem at the moment because we have had no need to use the watering can on the garden.  Presumably when Anglian water have finally filled the new reservoir in Essex with water from Norfolk's artesian wells they will allow us to have free access to our water.  One doesn't want to be parochial and selfish, but we are the ones with the ban.

What I started out to say is that the weather is not important; we are enjoying time to sit round a late breakfast table and share news, read, watch 'a little bit of telly', (James's favourite bit of the day).  No doubt Dave will want to walk on the beach once the tide has gone out, but it doesn't look inviting.

Time to find everyone else and check whether poor Sheila is looking glazed.  Big plans for being alive?  Not really, unless you count a tentative look forward to my 70th next year.  Before that we have Mary-Ann's 40th, Megan's 18th, James starting school and perhaps a new novel to keep me occupied through November again.

Not fretting indeed!

WARNING:  If you are feeling emotionally fragile, skip to 2)

1)Just re-read my last blog and can't believe I said I wasn't fretting about the CTscan.  Since then both appointments have come through: the scan tomorrow and the appointment with my gloomy oncologist not until April 13th.It is coming home to me at last that however much I hated the chemo at least it was something that might work.  The combination of feeling fairly sure that all is not well and the oncologist's assurance that he will not be offering me any more of this chemo (and that nothing else is available) is a bit debilitating.  People keep saying to me, 'you look so well', the inference being that I cannot possibly have cancer, and they are right.  I am going greyer, and wrinklier and I can't stand on one leg to put my socks on, but so what, I am getting old.  I walk to the school and back, and garden most of the day when it is warm, and bake, and knit, and lead worship at church, as well as getting ready to publish my picture book and working on my novel, and I don't feel like someone who is dying.  I don't suppose when I was working that I ever registered this period, sometimes quite long, when the cancer is there but not causing serious disruption.  I am living on two levels.  On one level living from day to day, enjoying life, making plans in the short term, planting stuff that won't flower for months.  On the other hand I live with the awareness that nothing is for ever, that plans may not happen, that there will always be messy untied ends.  All that is true for each of us, and it is not helpful to dwell on it, but having cancer makes the dichotomy between the two levels pertinent and painful.  It also makes communication difficult, because when I am asked how I am, I appreciate the concern, and don't want to cause hurt or embarrassment, but nor can I say: 'you don't know what it is like'.  I don't even want you to know what it is like, you wonderful people who care.

This is gloomier than my oncologist, and I don't even know whether I can post it.  I am not in good shape today, and am only blogging because Joe said I was letting all my followers down.  I had a horrendous bug 3 days ago and spent a night with my head over the loo.  In the morning I took my temperature and it was well up, which was a great relief, but I still feel a bit low, so apologies to all those who have been reading me and getting the impression it is not so bad after all.

This morning's sermon was about the raising of Lazarus, and our minister made the point that when our dignified versions of the Bible talk about Jesus being troubled in spirit and deeply moved at the tomb, the Germans have a more apt translation of angry and distressed.  It made me cry, but it helps to know Jesus was no more resigned to the horror of death than we are, but stands with us through it and brings us through it in his company.

Maybe the extent to which we cling to life is proportional to the loveliness of the life we have, and mine is lovely.  And if it can be lovely in a world that is full of war and murder and deceit and hatred, how much lovelier in the new creation God promises us.

Mary-Ann and Dave have just found me in tears (over my own blog, oh dear!) and accepted my bad day and promised they won't let me get smelly and that if we can't afford the funeral there's always the sand-pit.  How do people cope without family?

2)  So what is news?  Dave and I went to Norwich after church and bought a new car, a Kia Seconda which is big enough for all of us to go out for the day together.  I can reach the pedals, and it has heated seats!

My picture book is all complete on my desk top publishing programme and just waiting for Mick to come and make it press-ready and take it away on his memory stick.  I have an ISBN number and bar-code and I am quite impressed with it myself, maybe because so many people have taken pleasure in reminiscing.  And little Joe likes it too, so maybe I can flog a few to the school.  They do the Victorians on their syllabus, but I couldn't honestly produce any memories of the Victorians.  Joe wanted to know if those days in my book were before or after the Victorians.  Oh well!

Mary-Ann has plans to create an Italian al Fresco area outside the kitchen window, which is also outside our annexe lounge.  She wants tubs of exotic looking climbers, a water feature and fairy lights in the crab-apple tree, as well as her pine table and presumably some chairs for those hot summer days we are looking forward to.  Guess who the plans are for.

Dave has gone down the garden to sit in the sun.  It was cool out there earlier in spite of blue sky, but I think I'll take my cup of tea and join him.  I feel better for having unloaded - it helps to get things in perspective.

Day 6, Last cycle, second course of chemo

Well, I am halfway through the last cycle of chemo, and it really will be the last as the oncologist says he won't give me any more because of the polyneuropathy .  I still have some numbness and tingling of the feet from last year's course, and there is no certainty that the hands will ever go back to normal.  My main occupations at the moment are crafts and using the computer, so my hands make a big difference to my quality of life.

I negotiated a small reduction in the chemo tablets for this last cycle, having felt so bad last time that I seriously considered missing the last dose.  The symptoms have been a bit better, and this should be the worst day.  Or perhaps it just seems better because it is the last time.

I have been working on my Grandma book, re-scanning the pictures and refining them a bit on the computer.  The publisher suggested a sort of summary of what the book is about on the back cover, which is apparently where people look to see if they want to buy.  The idea was to illustrate it in the same way as the inside pages, but it is so long since I painted them that I thought my style might well have changed, so I have spent the morning using my photo software to extract cameo images from my pages, hopefully as tempting clues.  I have never managed to use this technology before so I am rather pleased with myself.  It remains to be seen whether the final jpeg will have the definition required.

Once this is finalised Mick is going to come and set up the Pre-press on the pdf , print me a proof copy and take it from there.  He is farming out the actual printing as I have designed the book as landscape A4, and his press is not big enough to take the required paper, but it is very reassuring to know that he can iron out the glitches for me before we spend a lot of money on printing.  Dave is convinced that we will re-coup our investment.  I am not so sure, but it is a lovely thing to be doing at this stage of my life, particularly as the book itself is basically about the early years of that life.

I am also knitting a blanket.  That sounds really senile, but it is rather a special blanket.  Think of it in the same way as the bead bracelets the young people are wearing to commemorate events and relationships.  I call it my love blanket.  I am using an Afghan style square based on a heart motif, with all kinds of variations, beads and tricky intarsia knitting, with stripes and squares as contrast.  Then I am putting names on them with swiss darning, as a reminder and tribute for all the people who have loved and helped me through this difficult time.  I am dying to get some of the squares sewn together, but have been held up by the request to knit slipper socks for the boys!  The things grandmothers do!

Our little Victorian

The garden is a bit behind, but I am sure we will catch up once I get some strength back.  I have potatoes chitting and yesterday the boys and I found some sweet pea seeds on last years dry plants, so we spread them on wet kitchen roll and are hoping they will sprout.  I'd hate them to think new plants are manufactured at the garden centre.  We then got carried away and started off some bean-sprouts and a margarine tub of cress, which Joe says should be ready to eat in 3 -5 days.  He is such a mine of information.

A few of my blanket squares

Dom and Dave were given some pheasants

I suppose my next event will be a CT scan, but I am not fretting about that because so far they have all been misleading.  The only useful investigations I have had so far has been the colonoscopies, and while these have given me a diagnosis they haven't prevented me obstructing twice.  Obviously family plans have been on hold for the best part of two years, and it is hard for those who are still hale and hearty, but all I can do is be thankful for each day that I can do something interesting, fun or meaningful.  That's every day, so much to be grateful for.

I haven't blogged since the beginning of December,  I am not sure why although some of the reason is connected with the novel-writing challenge I took up in November, which occupied all my computer time for a whole month and then some.  It got to the stage where other members of the family felt neglected, and I lost the impetus to write anything at all.  The novel is sitting here on my hard drive, four thousand words short of the 50000 target, and I am finding it hard to finish.  This is probably the trouble with using your own experiences as the basis for a work of fiction: it can't finish because things keep happening.

So what has happened?  Well, the other reason for losing the will to blog is living in this three-week cycle.  I am not very good at this - every cycle I am convinced that I am having different symptoms, including a recurrence of the cancer, and in the last two cycles I haven't even had the reasonable week just before I go for the next intravenous, (tummy bug in December, bad cold in January needing antibiotics for my sinuses.)  But this week I have been given a jolt, which has made me count my blessings and hope to stop being a miserable moaner.  Here's the picture of what happened yesterday:

Dave took this picture before I got up this morning, by artificial light.  The colours are a bit bleached out: the black eyes really are navy bue.  James had gone to nursery, but Joe was more than happy to see me as an alien.  His next dressing-up day is on the theme of 'lost in space'.  I have already been recruited to make an alien's head-dress, but he thought if I turned up as part of the dressing-up day people might suspect I wasn't a child as I look old.

Everyone has been very kind and sympathetic but I have to say I am fully responsible for neglect of my body, and incredibly lucky that it wasn't worse.  I braved the frost to take James for his injections, arrived in good time at the surgery, not our practice, and negotiated telephone consent for the jabs because I am not a legal guardian.  James was good considering that he had a jab in each arm and only snivelled a bit in indignation as we walked down the road.  At the end of the road we saw about 8 people waiting for our half-hourly bus into town, and as we had the library books with us we decided to proceed to town and treat ourselves to a coffee.  The bus came slowly round the corner as we got to the junction, so we ran across the road and I was just saying to James that by the time all the people had got on we would be there, when I tripped and we both went our length on the pavement.  James b ashed his knees and I took the full force on my face.  It all happened in a split second.  I suspect that my padded boots with good grip actually stopped me dead when I failed to pick up my feet properly.  Maybe the moral is that 68 year old grandmothers in charge of a 3 year old shouldn't run for the bus.

I was dusted off and marched back to the Toftwood doctors by a very kind passer-by, and there I was cleaned up and assessed and told I needed stitches.  Our friend Frances from church who was working there got her husband Richard to take us home as neither Dave's nor Dom's mobiles were giving them coverage, and after a cup of tea we set off for the N&N.  Dave says his car knows the way by itself!  Three hours later I emerged with stitches inside and outside my lower lip.  The rest of the contusions are on the surface, ugly but not needing repair.

So the period of being fed up and bored with routine treatment is over.  I hope I have learned my lesson.  I have certainly learned to count my blessings:
1) I was wearing a heavy imitation sheepskin coat which cushioned my tummy.
2) I didn't break my ribs or fracture my skull
3) I didn't trip in front of the bus
4) The library books were unbloodied and everything else was washable
5) Richard who took me home was the one who had got hold of me on Sunday and prayed for me in church - God has a great sense of humour!
6) James was none the worse for wear once we had found and removed the lengths of micropore and cotton wool from his upper arms.  (Before that he was apparently disabled by the injections, requiring Daddy to do the reaching out to put his food on his fork and bring his drink close to his hand.  The words 'drama queen' came from Mary-Ann, but the effect of seeing the intact and uninflamed skin was miraculous.)
7) I am too ashamed and cross with myself to broadcast my accident, but everyone who knows has been so kind.  I have had flowers and phone calls and so far no-one has refused to look at me, although I wouldn't blame them if they did.
8) Life has gone back into perspective; every day is unpredictable, the same for me as everyone else.  I am living with cancer; so what?  In the last week people have had a horrible traumatic experience on a captised liner, some have lost their lives while they thought they were going to enjoy themselves.  A 23 year old Rugby player had to travel to the other side of the world to make arrangements for the funeral of his mother who had died on holiday, and while doing that he died.  And a local high school girl died on a trampoline during a supervised lesson.  What's a few bruises?

I could go on, but I need to get this blog posted after all the complaints I have had!  It's different, anyway!

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.