Christmas 2010

This has been a very different Christmas.  Joe stayed with us for the whole time between Dec 18th and this morning, and it has been lovely to have him.  He had to work from home for 5 days, and found his laptop did not work very successfully in the conservatory and not at all in the annexe, so we bought a kit to extend the coverage and he got it all set up.  It was diffic ult at first, but he stayed up until 12.30 am one night and used internet websites and fora to solve the problems.  He never gives up on that sort of problem; we would have abandoned it in disgust.  We are very pleased to have that facility because I will find it useful to be able to access the internet from the annexe.

Dave and I bought each other a Wii, with the Resort pack, and again Joe installed it and even got the internet working through it so we were able to access googlemail and watch a slide show of Mary-Ann's photos on the TV.  The games have provided hours of fun and a certain amount of exercise (which was not obvious until we woke up stiff and aching!)  Alan-over-the-road came round on Christmas Eve with a bottle of his special Christmas sherry (Woods rum).  We got involved with 10 pin bowling and he saw Christmas in with us and got quite excited about the bowling.

Dave and I went to church at 10.0am for a short family service, then home to open presents before going to Gressenhall for lunch with Steve and Kate.  All except Kate gathered at the Swan at 12.30 for an hour, so we were able to wish Mick and Iris, James and Megan and Joel, and Chris and Sophie a happy Christmas.  We had a traditional turkey dinner, with Sally's sister Liz's famous Christmas pudding and my brandy butter.  Hannah and Craig with Reece spent the day there, and Tom and Rebekah arrived later with baby Noah, followed by James, Megan and Joel.  Kate's mother and her partner had been and gone by this time.  We came home at about 6.0pm to stoke up the fire and let Dave have his Christmas drink.

On the 26th we went to the Sunday service, again quite short, and had a quiet afternoon preparing for a Boxing Day meal with Dot and Rodney, (lamb this time, with Dot's Christmas pudding and more brandy butter.)  On Monday, officially Boxing Day, the sun came out at about 11.30am and we decided to have a walk at Cromer followed by fish and chips.  We got as far as the beginning of Happy Valley, but the final slopes of path were still treacherous with ice so we returned to the town feeling virtuous and thoroughly braced.  The fish and chips were very good, but we cancelled the idea of a drive round the coast and headed straight home for our fireside.  Steve and Kate came to return Liz's basin and stayed to enjoy a few games.

Joe has left us this morning so we are very quiet and unmotivated to do anything much.  We are off to Devon on the 30th, so have to get ourselves organised and packed.  Fortunately it is thawing, so our anxiety about burst pipes is lessened.

All a long way from the big bustling family Christmases of the past, but restful and just what we needed this year.  We are very grateful to Joe for his company, help and good advice, and to Sally for letting us have him for a long break without complaint.

It seems important to record the sequence of events at the moment, so this is just an update on the biopsy issue.  Yesterday morning I managed to speak to the specialist oncology nurse.  I had left  a message on their answerphone on Monday, but still no reply, then yesterday I tried several times to get through and the line was engaged.  It seems the office had been unanned on Monday and she was doing all the phoning on her own yesterday.  I'm not the only one!

I explained about talkng to my surgeon friend and his view that there was a possibility of this secondary being from the breast.  She was slightly huffy about this, saying that Dr Biswas had all the information in front of him and was in the best position to advise me.  She mellowed a bit when I explained that I had been offered a biopsy while at the same time being advised that it wasn't necessary, and that Dr Biswas himself had admitted he could not tell me definitely where this tumour had originated.  She agreed to speak to him in case he would need to see me and set something up before my planned pre-chemo appointment on Jan 26th.

I had e-mailed Sam, my surgeon friend, on Sunday after he had spokent to me at church, and asked him how I might tackle this, so I let him know that I had requested an appointment.  He had been thinking it through carefully and set down the case for requesting a 'definitive diagnosis' very clearly.  It gives me a lot more confidence, as Sam has over 30 years experience in treating breast cancer, and was also the surgery professor at UEA so he thinks very clearly and logically.

Last night we did our annual 'carols by streetlight' outside Ian and Sue's where we hold our church cell-group meeting.  Every year I design a flyer, the church prints it, and Sue and Ian deliver to all 61 houses in their road.  We serve mulled wine and mince pies, a friend comes with his accordion and various neighbours join us for a half hour of carols and fun.  We   thought the weather might put people off this year, but it had started to feel a littel warmer, and both rain and snow held off.  We had more neighbours than ever, including a small baby who thoroughly enjoyed the singing. 

Afterwards our cell-group went inside and shared a sit-down meal together.  We all bring something; Dave's contribution is always a curry, and that went down a storm.  I had made the mince pies for the carol-singing, with the help of two new cell-grooup members who came to help.  It was a lovely informal way of getting to know them better.  Sue came too, although she bears the brunt of the organisation and seating arrangments.  This all sounds a bit trivial, but for myself I just wanted to record that in December 2010 I am doing all the things I would normally do, and enjoying them.  Oh, and the choir items were a great success on Sunday.  Those who are available have been asked to sing to the residents at Eckling Grange on Christmas Eve, so we get our moment of glory again.

A new phase of life

My last blog seems a life-time ago.  Last Wednesday we went for my follow-up visit to the oncologist.  It was a bit nerve-racking, and if I had been told that the CT scan showed a recurrence of the bowel cancer or liver secondaries, I would have been prepared.  I wasn't prepared to be told I had a lung secondary, and the news froze my brain for a bit.  The consultant told me the treatment was more chemotherapy, which couldn't start until I had finished the last lot for three months, to let my body recover enough to be battered again!  I did pull myself together enough to ask how he knew it was a secondary from the bowel and not breast, from my primary 8 years ago, and would the treatment be different.  He said the treatment would be different but thought the risks of a biopsy outweighed the chance of it being a breast secondary.  The history and the fact that the cancer had been at the very edge of the original specimen made bowel the most likely diagnosis.  He had given me a prognosis of 6-12 months without treatment, maybe doubling this with treatment, so I wasn't thinking very critically.

Joe was having a much-needed break in Spain with Sally, having a wonderful time, and we were not prepared to spoil his last two days.  Mary-Ann took it on the chin; like me she tends to prepare herself for the worst case scenario.  She was desperate to talk to Joe, but agreed we should not tell him until he was home.  Neither of us knew what time he was expected, and by Friday afternoon we were getting a bit twitchy about the possibility of Facebook giving us away.  By the time he got home and had re-charged his phone he had numerous text messages asking if he was home yet, and suspected something was going on.

Joe's reaction was to cancel his week's work, apologise for not being at Sally's daughter's birthday party and get himself home the next day.  Sally joined him yesterday, specifically to hear us sing with the choir at the candlelight service last night.  She had a horrendous journey with windscreen washers freezing up and a multi-police-car incident on the M6 to unsettle her.  My  sister Mary had spent Saturday with us and had a similar journey on Sunday morning.

I couldn't let everyone know the news on my blog as planned because of the possibility that Joe might read it, so I sent a group e-mail to family and another to friends.  Every single person has made a response of love and good wishes, and I feel very cherished.  Church people have been free with hugs.  There is something to be said for cramming the rest of your life into a shorter time than planned, it really brings life into focus.  I still feel pretty good, and it is hard to know this won't go on indefinitely, but for now I am just living each day as it comes, being thankful for it, and enjoying it.

We are still going to Devon on the 30th, and Dave has decided to stay for the 2+weeks.  This interval before I start chemo again may well be the best I get, and it seems very unfair for him to miss it and then pick up on the misery of chemo.

A surgeon friend yesterday expressed some surprise that I was to have further chemo without a biopsy, and pointed out that breast cancer commonly spreads after a long time, whereas bowel cancer rarely spreads to the lung.  I am still contemplating asking for a biopsy in spite of the risks, but I remembered this morning that my oncologist told me they had discussed me at their meeting before my appointment, so I am up against a body of specialist opinion.  I was offered the choice however, and I think I might need a confirmed diagnosis to have the courage to go through with the treatment.  Watch this space.

This is not a very entertaining blog I am afraid, but I needed to set this down as a landmark situation.  I am genuinely having a really nice time.  I have never had so much attention, so many visits and hugs.  Compare that with old folks in a home....Enough said.

All the nativity books are sold!  Ruth rang up from Grreen Pastures on Thursday to say they had all gone, and was there any chance of getting some more, in particular for the church's Christmas Fair on Saturday.  It was very short notice and Mick had had three days of broken down machinery during the week.  He agreed to try, no promises.  Then he rang back to say the production price would be considerably more for such a short run (Ruth wanted 20) so Dave said he had loads of customers wanting to buy them so he ordered another 100!  We delivered 20 to the Christmas Fair yesterday morning, and for the rest Dave is now my distributor.  He'll have to get moving to shift them before Christmas, although I suspect Green Pastures may need some more.  They already have back orders, and various volunteers from the shop are saying they forgot to get theirs!

Bob e-mailed me with a copy of the letter he received from his father's agent, suggesting I should contact their children's book person, so I have e-mailed her to see if she will accept the pdf version of 'When Grandma was Little' to look at.  The instructions for submissions also mention a CV, so I have also asked what that means in this context, as I can't believe they want to know the history of my career in medicine.  I think the only CV I have ever produced was 8 years ago when I retired from Lakenham and was looking for P/T work.

It is all quite exciting and although I don't expect ever to make anything significant from it, it does give some point to my literary efforts and sharpens me up.  I have a problem at the moment with balancing my tendency to self criticism against the untempered approval of family and friends, and the view of an unbiased stranger will either stop me in my tracks or give me the confidence I need to go on.

We had a couple of days of thaw this week and nearly all the snow has gone.  I should really have got out and planted the Autumn broad beans.  Apparently they are only suitable for autumn planting, but my numb tingly fngers still don't like the cold.  There was a hard frost last night, so I expect the ground is not very workable.  I'll see how Dave gets on pulling up a leek for lunch - if he has to dig it up I doubt if the beans will do anything useful in the ground.

These pictures belong to yesterday's blog, which should really be read first.

I tried to send Joe a photo of our Indian meal and couldn't do that either.  I then realised I was trying to send them from a zipped folder that I made to send to Mary-Ann.

This is Joe with my laptop, playing computer games I didn't know I had with Sally's help.

And this is us having our second main meal of the day and enjoying every mouthful.  This time we were with Sally's family: at the far end are Jodie and Ben, and beyond Joe are Jen and Rich.  The end wall of the Indian restaurant is a mirror, so the impression that we are eating in a very long railway carriage is entirely false.

(I have updated my garden page today with a couple of photos.  You have to scroll to the bottom of the page.)

Twixt chemo and CT

I can't believe it is nearly a month since I blogged.  It's a funny old time now.  I didn't expect to have any anxiety about the CT scan and the appointment with the oncologist a week later, but I have to admit I have.  When I embarked on the treatment it was presented to me as the next stage of treatment, I was warned about some of the sideeffects, and although the prognosis was more or less 50/50, I felt fairly confident that the cancer had been completely removed and we were simply playing safe with the lymph nodes.  Since then I have had a wide range of symptoms from my guts, the side-effects have extended from one treatment to the next, our friend John has only months to live (having had his bowel and prostate cancers diagnosed by screening), and the last two cycles of chemo were so debilitating that I do not think I could agree to any more even if the CT scan shows I need it.  I am being pathetic I know, so many people are going through far worse, and with less support.  I have noticed a cycle of mood as well as physical symptoms, with despondency and foreboding setting in during the third week.  I know now that this is when the blood values are at their lowest, and the steroids I was taking on the 21st day to protect me from reaction to the infusion were a real pick-me-up.  Of course, I didn't have the steroids this time, and no-one to ring me up  and tell me how the bloods were and ask me how I was.  I really thought I was going to be back to normal, and the numbness that has settled into my finger-tips is a constant reminder that I am not.

BUT we did have a lovely time in Stone, and apart from falling asleep during the evenings after a glass of wine I was not held back from anything we did.  I read to the children on the two mornings, starting before seven, then got up with them and gave them their breakfast.  We did a geo-cache walk that JOe and Sally had done before, Sally simplifying it for the boys so that they walked round the Downs Banks looking for red signs, and a bridge over the stream (with a troll living underneath who fortunately had gone out for the day) finally discovering a metal box under the leaves which contained various treasures.  The boys both left a dinky car, and Joe took out a strange white wand.  When James had his turn to choose he chose Joe's yellow car, so it didn't stay there long!

We all had our annual visit to Trentham Gardens, and the four Knees had their ride on the carousel.  Mary-Ann looked like throwing up, but the boys were starry-eyed so it was worth it.  It was getting dark, and the lights down the walkway and in the garden centre were magical.  A chinese take-away and various games on the Play-Station inter-active thing (don't know what it's called, but it's like a Wii-fit), rounded off the Saturday nicely.  On Sunday we had a quiet play morning and an early lunch at the Crown and Anchor before the Knees left for Devon.  The rest of us were booked into an Indian restaurant in Stafford, so we had tried not to eat too much lunch.  We really thought we wouldn't be able to face food again that day, but the Indian spices worked their magic and we had a wonderful time and a delicious meal.


Monday and Tuesdays were grown-up days: charity furniture shops and bulk spice buying from the Pakshop. (That really is its name, not us being insulting).  It's a Pakistani supermarket in Hanley, Stoke, which makes the Indian section of Tesco and Schwaartz spices look like a joke - you buy in Kg not grams.

Joe fixed us up with an iRiver which is a little hard drive with ear-phones and a huge memory.  He also had a gadget to connect its output to the car radio (without a plug!) and we downloaded a novel from my laptop that I had previously bought from WeRead4you.  It was a good job we had it, because we made a bad choice of A47 rather than A11 on account of having seen a warning of road closures on our way to Stone.  It was a bad choice because the road was closed without warning at the end of the Peterborough by-pass, with no warnings or diversion signs.  Hundreds of vehicles of all descriptions made a very slow detour through the lanes of Northamptonshire and Lincolnshire, deep dykes without banks or barriers, and sharp bends in roads barely wide enough for two lanes.  We eventually arrived at Wisbech, from where it was relatively straightforward.  We enjoyed our audiobook so much that we unpacked the car and then sat through another two chapters while the fire gradually took the chill off the house.  Apparently our solid fuel central heating had kept the house fairly warm until Monday, but by Tuesday evening it was 'perishing'.  I slep in bed-socks and bed-jacket.

Back at home I am still experimenting with recipes for Dave's Christmas.  I made my own sausage meat with pork fillet, a round of bread and grated apple, with 10mls of oil to replace the hard fat that is normally added.  I thought it needed more seasoning, but surprisingly Dave loved it.  He didn't even c omplain about the pastry made with a mixture of white flour and fine oatmeal, and oil instead of fat.  It was very crumbly, and I think my low-GI aspirations would be better served by a simple wholemeal pastry.  Anyway, we keep trying stuff out.  The mincemeat with no sugar or fat, but a large proportion of green tomatoes was a success and I have some secreted in the freezer for Christmas.  He doesn't know about the green tomatoes yet!  I am considering putting my culinary adventures into one of my little books!  I probably need to wait and find out if we are making any difference to the blood sugar first!

This is a very long blog.  Having had a good moan initially I wanted to make it clear that I am actually living.  In fact I am having a very good life, and have nothing at all to moan about.  We have beautiful snow at present, and more to come later in the week.  OK, my tingly numb fingers and toes prohibit me going out in the cold at all, but the snow makes me feel fully justified, and I love my lazy, 'do it when you feel like it'  life.  I am no better a housewife than I have ever been, but at least I have no loss of self-esteem because of the way it was!,   Best of all, I don't have to go to work and face the fear that I am no longer adequate.  My appraiser always insisted I was OK, and no worse than anyone else, and he loved my paperwork, because I am good at reflecting about what I am doing, and these days that is almost more important than what you do!

Anyway, it was time for me to step down.  I don't regret anything except the loss of income, and we still have 'the plot'.  I have tried to add a photo, but for some reason the ones I want are not coming up on the upload browse.  I'll try again later.

Nearly there

Day 2, cycle 8. 
The last infusion was straightforward, the shortest time we have been at the hospital.  I was not looking forward to it, because I do think there is an accumulative effect, with the tingling lasting almost until the next dose (but no more of those!) and a loss of balance which I put down to weakness of the leg and buttock muscles.  I fell onto my bottom twice yesterday, once because I trod on the handle of my handbag and my ankle went over, and the next time trying to stand on one leg to pull on my trousers.  A foretaste of getting old I suppose.

This cycle I managed to make green tomato chutney.  It is good to know the unripened tomatoes will not just rot on the stalks, but I am not sure how edible the finished prduct will be as I left it to simmer and it burnt on the bottom.  It would have been OK if I hadn't rushed in and given it a vigorous stir, finishing up with black flakes spread right through the pan.  I spent about half an hour fishing bits out, but we shall have to see how fussy the family are going to be.  I think the actual chutney is OK, but I may have to eat six jars of it myself!  I have inherited my mother's reluctance to throw anything away.

Mike has printed me off a sample copy of 'When Grandma was Little', but we both agree the ring-binder is not ideal.  Also the colours are a bit faded, which is either a change to a semi-gloss paper or the random way I saved it to pdf.  I really need a lesson about the technicalities of scanning, resolution, output and and all the things I have hitherto just done as I was told.  There is some tidying up to do, for instance a letter t floating in a hedge that I only noticed in the printed version.  Also the book ends rather abruptly with the Village Shop page.  There is an introduction at the beginning, but the rest of the book is a series of unconnected pages with various themes of things that stick in a child's memory, so it finishes when I couldn't dredge up any more of those.  I have noticed though that there is something satisfactory when reading to a child about the last page, even if it only says The End.  If nothing else it is a good bed-time signal.  The cover is a watercolour rendering of the Whitman family posed outside for a photo, and the back cover is me reading to the boys on the Chesterfield, and I feel the last page needs to link past and present in some way, as the introduction does.  No doubt it will come to me at 4 o'clock one morning!

Dave and I joined up with the Baptist Christmas choir last evening to practice for the carol service on the 19th Dec.  We have four songs to sing, one of which is entirely new and written by one of our singers with music by Graham our pianist.  We are doing a repeaat performance of last year's In the Bleak Midwinter, I Wonder as I Wander, and a version of Silent Night with some rather unusual harmonies.  Steve came last night and I think really enjoyed singing bass with Dave.  If he hadn't come Dave would have been bassing by himself, so they are looking for recruits for next week.

Next Wednesday I am doing a book signing for Green Pastures.  A bit over the top for a twenty-page booklet, but if it helps the sales I don't mind.  I have no idea what I am supposed to write, but hopefully someone will help me.  Both my Tesco's cashmere sweaters have moth-holes in the sleeves, so my plans for casual elegance have been thwarted.  Dave went to the Big C centre on Wednesday with Barbara, our church friend whose husband John is just embarking on chemotherapy for his third primary cancer in 2 years!  Dave came back with a sheaf of leaflets about complementary therapies and beauty treatments, all emphasizing that if you look good you feel better.  Personally I think it is the other way round, but it is a good excuse for a new top for the Signing.  I also fancy a pair of leggings, returning to my youth while my legs are wasted enough to look good in them, but I am too cold for the cropped ones and if I don't buy Petite the crotch will head towards my knees or the waistband will come up to my ribs.  Whitman heritage again!

Next week I have an audiolgy appointment to try to sort out my ability to hear speech.  The following week I have my flujab and then on the Friday we are off to Stone for the family weekend.  Dave and I are staying over until the Tuesday morning.  It will be our first sortie out of Norfolk since February so we are really looking forward to it.

I am a bit wobbly this morning which is why I am blogging.  Dave is trying to get his three services done in good time to get to Coffee Shop at church, get the shopping done (market and Tesco), get the car washed, visit the bottle bank and buy my new top.  I need to conserve some energy for that lot, or I will finish up on the old ladies' chairs at the Tesco check-out.  That is SO embarrassing! 

Day 2, Cycle 7.  Well, Cycle 6 was a bit strange.  I didn't get the anticapated horrible day on Day 5,  but then didn't really get an upsurge after that, so I really only had one normal day, which was last Tuesday once I had started my protective steroids.  Wednesday wasn't too bad, with little cold sensitivity or tingling initially, but it started yesterday.  I have given myself a quiet day today and 'finished' the 'When Grandma was Little' book.  I don't expect it really is finished as I always find I need to make adjustments for the printing phase.  I don't really understand much about desk-top publishing, I have just been learning as I go along, finding out what I need to know with great difficulty because I haven't started from the beginning.  I need Joe to come home for at least a week!

My little Nativity book is in Green Pastures, and is selling, quite slowly at the moment, but still a couple of months till Christmas.  It's good to have these little projects to work on while I am of necessity less active.  I am managing to keep up with the washing and drying, and iron as little as possible.  Until this last cycle I also had a surge of energy and organisational ability at the end of each three weeks, but I am running out of steam.  I still have overgrown courgettes needing to be made into jam or pickle, two pairs of trousers to turn up and a whole range of diabetic-friendly recipes to try out.  I don't think I have recorded here that Dave is now diabetic.  He has given up sugar in drinks, cut down on alcohol, and learned to like brown bread, but still gets the munchies.  Admittedly he is eating plenty of fruit - I have never thrown so little mouldy stuff away - but I am looking into natural sugar products like Sweet Freedom, which has a whole range of recipes on the internet said to be low GL as wll as reduced sucrose.  I haven't been given any idea how severe Dave's diabetes is, or even whether it is any more than borderline, but the Diabetes UK guidelines are pretty relaxed and I am hopeful we can do it with dietary changes and not too much deprivation.  He has lost weight anyway, so he is getting somewhere.

We are enjoying our conservatory since we got it tidied for the Macmillan Coffee morning.  Having the heating on helps, and it is nice to escape from the chaos of the kitchen for our evening meal.  We had breakfast in there every day with Sheila and Bob, while it was still sunny in the mornings, and quite often take our lunch in there.  Our North facing kitchen is so dark almost all through the day - worse since the annexe cut out the morning sun- so we are glad to have the conservatory which is still bright even on dull days.  I also paint in there, and with the craft c upboard and the shelves for the boys' paper and pens and Prits it only takes a minute to put eveything away at mealtimes.  We have moved the chaise longue from the living room as it was doing Dave's back no good.  He now has an electric recliner - on his wish-list for a long time - and the conservatory has a day-bed for snoozing on warm afternoons.

Just to finish, one of the pictures from the new book:

Day 6, and yesterday was the best Day 5 I have had.  I made apple juice with the windfall eating apples and drank a big tumbler full, did some painting and organising of my book about the old days, 'built' a sandwich for lunch, made Dave a dental appointment for mid-day as his toothache is getting worse, then cancelled it because I couldn't contact him on his mobile!  (Doesn't sound like much, but when it takes and hour and a half even to speak to the receptionist, it actually took up a large part of my morning.)  I also had a cup of tea and a catch-up with Dot, did a load of washing and hung it around the house because the weather is appalling.  Then Dave and I watched the recorded period drama, Downton Abbey, which I would have enjoyed more if I could hear all the dialogue.  I am not sure if it is our new TV or my hearing, but I am watching everything with intermittent sound, and have to keep asking Dave what is happening.  I have taken to doing a codeword or other puzzle at the same time to lessen the frustration.

Today I was confident that I would be in fine form so I tackled the drawers of the tallboy which were full of about 30 years truck and wouldn't open.  We are doing a re-think of our bedroom storage, and contemplating spending money on new wooden furniture, but I want to rationalise what we already have first.  Cancer has made me think about why I am keeping so many souvenirs and tatty memories - I don't just have stuff dating back to my school days (old school tie,) but also numerous attache cases packed with Mum's and Nan's stuff.  When it has been kept so long it is really hard to throw it away, even though sometimes I have no idea of the original significance.  So I am having a think about the stuff I store, because Mary-Ann and Joe won't want to make decisions about my old stuff as well as their Nan and Great-Nan's.  The good thing is it may well mean we don't have to spend money on furniture. 

The Rhino men are here today applying the levelling compound to the drive.  The postman can't get in, and when I made them a cup of tea one of them had to walk all the way round the pightle to collect it from 'Mum's'.  I have almost given up trying to call it the annexe - 'Mum's' is so much more personal, like it is still part of our home.  I have probably done a bit too much this morning as I am a bit wobbly now, which is why I am sitting down with a cup of tea and doing this rather wandery blog.  I have found when the overwhelming tiredness attacks it is best just to give way to it.  It makes me feel a bit pathetic, like I am milking the situation; not knowing the physical basis for what I feel is hard for me.  My potassium was a bit on the low side when I had my last blood test, which gave me the idea I should eat more fruit, hence the apple juice, but it is probably irrelevant except for making me feel I am doing something positive. 

I had an unexpected phone call this morning from a friend from church who had been having her Quiet Time and felt God was asking her to phone me.  She is a person who really listens to what God is saying to her, and acts on it, and what he was saying to me through her was that my trust in him is bringing blessing to those around me, and that he is using my illness to bring about good.  That was such an encouragement, because actually my own Quiet Time is not very focussed at the moment, and sometimes I feel a bit guilty that I am not growing spiritually.  What my friend said confirmed what God has given me since the beginning of this, that this is a different time, a time of just trusting and knowing peace, not knowing what the short-term outcome will be but simply knowing God is walking with me through it all.  It was such an encouragement to have that confirmation, and to know that God is not marking my homework!

Well, the Rhino men have done all they can do today.  The leveller is taking a long time to dry, but they are hoping to get the resin on tomorrow.  We are going to be so smart!

I haven't posted for 3 weeks.  Been too busy.  Chemo symptoms are boring now as they are the same every cycle.  Day 5 was horrible again, so don't take any notice of anything I might say next Monday, in fact it is probably best if you leave me to my own devices that day!

We have had a lovely 'grown-up' week with Sheila and Bob.  They had had a pretty exhausting time with travelling around for weddings and Bob making his contribution to a funeral that he wasn't able to take because he was here.  We pottered round Sheringham at the beginning of the week and Holt at the end, picniced in Holt Country Park, went to Taverham GArden Centre and spent a lot of money on plants, and drove all the way out to Alby Craft Centre to see a furniture maker who came up on the internet when I searched for re-claimed pine, but works in anything but reclaimed pine.  The trip was worth it though, because on the way home, following the Satnav, Dave spotted a sign for Guestwick.  I have been nagging about going to see the new stained-glass window made by a young local craftsman over a period of 10 years.  It ws featured in the EDP, and I have wanted to see it ever since.  With the light shining through it, it was so much better than the pictures in the paper, and we all took pleasure in seeing it.  Then Bob and Sheila went to sign the visitors book and the last entry was a couple they have known for 40 years, who now live in Reepham.

At home we did a minimum of housework, gave ourselves a space every day for reading and rest, Sheila did weeding and together we hosted a Biggest Coffee Morning in the World for Macmillan Cancer Care.  I had put a letter through all the Homewatch letter-boxes and Dot and Rodney had put invites in 50 more local houses.  It was also on the church notice sheet.  We made cakes and scones, Dot baked sausage rolls, and June Ward, our Fair Trade lady from church provided individual caffetieres and teapots as well as cake.  Various neighbours and friends also provided cakes.  By ten past ten our house was heaving, and some of the early-comers must have stayed here' being sociable and talking to old and new friends' for a couple of hours.  Dot and Rodney had run a raffle and tombola with prizes from nearly everyone they have run into in the last few weeks, and we sold some left-over cakes at the end.  Altogether we made £362 on the day, and after we banked it this afternoon another £5 arrived.  Even the cashier at the NatWest said how well we had done!

I have done some weeding and planted some spring cabbage this afternoon after my rest, and hope to do a bit more autumn stuff in the garden tomorrow as it will be October before I am able to handle cold things again after that.  Amazingly people liked our garden, weedy and untidy though it is.  Hopefully by next spring it will be better organised, with more perennials in the flower patch so we don't have to buy plants to cover up bare spaces.  I worried a lot about that earlier this year, but since we started to have some rain everything has filled out and I now have to thin out the catmint and re-site some of the bigger plants that are crowding each other.

Just a quick update to say that the gloom of the last posting has gone - flushed down the loo.  Every cycle it happens and every time I think it can't be just that.  Patients can be very stubborn and stupid!

It's Sunday afternoon and in the last twenty minutes we have had brilliant sunshine, torrential rain, hail and thunder.  Typical bank holiday weather.  Never mind, we've got steaks from Weybourne (we spent yesterday morning in Sheringham) fresh veg from the garden and baked figs with sherry and honey for supper.  Mmmmmm!

Dave says hello to all our readers.  Actually he is my keenest follower, so he can say hello to himself.  Must go, there has to be a rainbow out the back.

This is my last day of chemo tablets for this cycle, so I am halfway through the treatment.  I've actually been quite good this time after the reduced dosage, but in a contrary way I am now noticing the remaining side-effects more.  There is a sort of background dis-ease, hardly ever amounting to pain, but enough to keep me aware that I am being poisoned in a good cause, and giving me ungrateful feelings that it had better work or I might as well not have wasted these precious weeks.  I am hoping that this week will see me feeling more like me, which will at least reassure me that the symptoms, which are centred on the abdomen, are entirrely due to the treatment and not to some sneaky lump of cancer left behind.

We've both been tired this week.  It's not just feeling flat after saying goodbye to the family, but also catching up on sleep after a week of disturbed nights.  We didn't hear the boys at all, it wasn't them, but several trips to the loo every night and difficulty getting back to sleep takes its toll.  I hope when I am better we will be able to break the habit of going to bed in the afternoon!

All is not gloom by any means.  I have been setting myself a task every morning, and getting on top of some jobs I have been putting off for months.  Yesterday I made a start on my annual accounts for the tax-man.  In fact that is now on hold on the conservatory table, waiting for various bits of paper that appear not to be available.  I feel better for having made a start.  This morning I emptied the bottom drawer of the kitchen unit where I keep tea-towels, freezer bags, Dave's chef hats, rolling pins, waxed discs for jam, jelly bags and so on.  It's one of those drawers with open sides and a low back, so stuff had gone over the back and was sticking out of the sides and shutting it was a daily fight.

That was my easy job.  This was cupboards day, but the next cupboard took the rest of the morning.  It was a horrible job that I steel myself to do once every seven or eight years - sorting the preserves cupboard!  I now have as many jars as I could possbily want, and tomorrow the dustmen will take away four heavy bags of old jam, pickle etc.  Some was dated 2003!  Even so I hate scraping out jar after jar, thinking of the picking, cleaning, boiling, testing, pouring into jars, sealing and labelling.  To say nothing of the pounds of sugar!  Well, I should learn to make just enough for ourselves and maybe a few gifts.  It's like the garden where we still tend to grow rows of veg like Mum and Dad did, with no hope of using everything.

Notice to all those who keep saying: 'don't forget to save me a jar of cucumber pickle':  You are welcome to a couple of jars labelled 2008 or 2009, but I am making no more this year!  In fact the cucumbers are making a shaky recovery from an attack of red spider, courtesy of Green Gardener's phytoselius, and before I found the store of one and two-year old pickle I was seriously thinking of buying cucumbers for my annual quota.

On Monday I transcribed three letters written from Australia by Grandad's brother Harry and Harry's son John.  I got them off to an Ancestry contact who is Harry's great grand-daughter, and on Tuesday heard from her.  She opened the e-mail and read it at work and cried to think she was reading words written by her great-grandfather and grandfather.  Isn't the internet wonderful?  I bet those letters took weeks to get to England in 1928 and 1933, and I have sent them back overnight!

Dave is making mutterings about 'reading in bed'.  That's a euphmism for an early night, but I don't mind, I'm always ready for bed.  Baking tins and casseroles tomorrow.  Got to get as much done as I can before I am laid low.

The time is going so quickly.  The fortnight we have looked forward to for so long is well into its second week, but we still have some nice things to do.  Mary-Ann and Dom had a most disappointing meal at Hethersett Park Farm; they had had better at a Harvester and at least that is honest about what is on offer.  It was sad because this was their annual special meal which hitherto has always been at  Number 24 in Wymondham, where the food is always perfectly cooked and they have been made to feel special .  Park Farm was built up as a first class restaurant both on their web-site and also in the recent booklet of Norfolk eating places given away with the EDP.  The menus indicate unusual combinations of food cooked by a chef, but did not in any way live up to the lyrical descriptions.  Dave had driven them to Hethersett, and was only back home for just over an hour before they were on the phone to be picked up, just eager to get out of there.  It was more expensive than Number 24 too.  They didn't want to spoil their wedding anniversary by going through the whole complaint thing, but Mary-Ann has written to express their disappointment.

Anyway, tonight they are in Cromer.  We bought them tickets for the End of the Pier Show.  I think when it came to it they probably felt it was a long journey and a ot of trouble for a local variety show, but we are keeping our fingers crossed that they are able to relax and be entertained.  The boys have gone to bed without any fuss, so up to now we are feeling quite smug, particularly as we are a leaving them with Dot and Rodney tomorrow to go out for an 'all you can eat'  chinese buffet at the Lucky Star in Norwich.  I have been going through my 3-weekly bad days since Monday, but expect to be able to enjoy a meal out by tomorrow.  It really hasn't been as bad this time, presumably because of the reduced dosage.

The family are going to High Lodge in Thetford Forest with Mary-Ann's school-friend Sally and her children tomorrow, so that I can take it easy.  Then on Friday if the weather allows we hope to be able to visit Africa Live courtesy of Tesco Rewards, although as yet the rewards haven't arrived.  Then it will be the weekend and the holiday will be over.

Both the boys are book mad.  They have the audio version of Julia Donaldson's 'Room on the Broom' on Mary-Ann's i-pod, which keeps them occupied in the car, and we bought them the book.  Joe is now word perfect, turning the pages and reciting the words with all the expression.  He is beginning to recognise the shapes of the blocks of text and some of the words.  I know Mary-Ann is keen for him to discover the thrill of reading at school, but I think it is going to be hard to hold him back.  James' vocabulary is growing daily, complete with little sayings like 'it's not funny'.  He also does the pointy finger when he doesn't like what is said to him, which is very amusing but must not be laughed at.

We have done drawing and sticking, complete with glitter and crumpled tissue paper, and a giant mural is awaiting some blu-tack to adorn Joe's bedroom wall.  Fortunately it is an underwater scene, which will not be out of place with his sea-side mural.  James, being right-handed, holds a pen far more comfortably than Joe, and concentrates very well for a two year old..  He loves to do whatever Joe is doing, and while Joe was filling a page with random letters yesterday, James filled his with his own hieroglyphics, which were surprisingly neat, contained and many of them joined up shapes.

Baking has been our other bit of fun, done while James has his sleep at lunch-time.  Joe and I have made two batches of cookies, and today he helped Mary-Ann make carrot cup-cakes.  He sticks it out to the end, finishing with lifting them onto the cooling tray.

I am so grateful, to God and to Mary-Ann and Dom, that we have the privilege of sharing this advent ure of growing up all over again, this time with grandchildren.  They are such a joy.

p.s. Just been up to James for the fourth or fifth time, at twenty to nine.  The room is still surprisingly light, as we took down the blackout linings for Joe's sea-side room when we thought the boys were going to share it.  I have hung bath sheets over the curtain rail in the hope that if he wakes again he will just assume it is the middle of the night and go back to sleep.  Maybe we'll move the curtain linings back into his room tomorrow, as Joe now sleeps with the door open onto the lit landing so he can get up to the loo.

Having a great time with the family.  So far not really missing out on anything except trips to Tesco, which I forego to conserve energy for something more interesting.  Enjoyed watcing them all at Splash, and actually managed to get a screaming James dry and into his clothes while Mary-Ann showered and washed her hair.  James screamed because he didn't want to come out, which was a breakthrough, due, Mary-Ann said, to the warmth of the water. Joe went down the slide into the water three times and couldn't wait to go up again even though it was dark, and the final twist turned him backwards.

Mary-Ann has gone out for an evening with a couple of school-friends and Dave and Dom have been for a curry at the Akaash and are now watching Jaws.  One of them will go and fetch Mary-Ann later.  She is a bit indignant as she used to walk home by herself, but Dave said Dereham is not the same place.  Sad!

Just for the record, on my last post I said diarrhoea bugs thrive on acid.  That should have read 'alcohol'.  Sorry!

Chemo 4

Just back from the hospital after 4th infusion.  Saw the doctor first and apparently the tingling that went up to my lower abdomen last time was v ery excessive, grade 3 neuropathy.  Useful conversation about the blood count, which is at its lowest at 7 - 10 days, and rather amusing because that is just before I stop the chemo tablets, at which stage Dave decided we were safe from midnight treks to the hospital, and has been enjoying a drink in the evenings!  The count climbs slowly over the next 10 days and does a sudden climb to normality just before the next infusion.  I was at a count of 1.2 for neutrophils on Monday and up to 4.5 today.  Anyway the upshot of all this is that, at my suggestion, I was re-weighed today and was 3 Kg lower than when they calculated my surface area! I wasn't surprised, because when they weighed me at my first consultation it was about a week before the anastomsis was stretched.  Can't quite imagine what 3 KG of poo looks like and don't really want to know, but today my prepared infusion was reduced from 500mls to 350mls.  Minimal tingling  under cold water, no gloves, no coat to leave the hospital, and no voice change. Admittedly the car was registering 23 deg, but I do feel so much better, and optimistic about enjoying the family more than I had expected.  I have always said I was being poisoned. 

They have gone off to the Dinosaur park this afternoon, using the Tesco tokens I got them for Africa Live, so now I'll cash in some more for the end of next week and get enough to cover Dave and I as well.

Mary-ann and the boys have had a bit of a stomach bug, which could have come from Wales.  I mentioned to the doctor that we would going to get antiseptic wipes for the taps etc, as little Joe is fiercely independent about using the toilet.  'No good', says the doctor, 'diarrhoea bugs thrive in acid and are cleaned off with soap and water'.  So there's a useful bit of information: another wrinkle in your bum' as Rose would have said.

Busy day in the garden, account and photos on garden page

Just back from a curry at the Akaash, just the two of us.  I feel a bit overful at the moment.  I'm not too bad, but still not getting my 'functions' sorted out.  Nothing to complain about really, I just feel I did better than this last cycle, making jam and pickle and gardening.  I seem to be working in short bursts this time, but maybe I'll have a very productive few days before the oncologists attack me aain.

The real reason for this post is that I found the $GREED score sheet from the game we played at Weybourne with Joe and Sally.  Sally scored because I can't add up in my head.  I made a joke that they had to let me win beca\use I have cancer, and Sally's immediate retort was 'and I'm grieving.'  The fact that she could say that in the context of a game and then make reference to it on the score sheet shows how far she has come in the last difficult months. 

Home from Weybourne

Our holiday is over for this year.  Well, to be truthful , it's all holiday for me at the moment, but it was good for Dave to get away from the cementing and gardening and the daily grind of work.  We stretched it out to 10 days, as we found we had made a mistake with the date and had booked the caravan site until today, Sunday. 

This has been the most laid-back holiday we have ever had.  Joe and Sally were exhausted and just longing to laze around and read, and that suited us well because it wasn't my best week in the chemo cycle.  They thought I did very well, and my lack of motivation and energy was not evident.  A bit strange really, b ecause my perception is that it has always been me who looked up the places of interest, nice places to eat or walk,local events that can be fun to join.  I did cut out a double spread from the EDP but no-one was terribly enthusiastic, which let me off the hook.

We enjoyed shopping locally for food for our BBQs, fondue and snacks, had a take-out curry, and a sea-food platter at Wells.  We actaully went there intending to have fish and chips on the quay, but even after walking George along the river-path we were not hungry enough to justify it, so stopped at the Fleece for a sandwich, promising ourselves fish and chips at tea-time from Holt.  It really wasn't in the plan that the courtyard of the Fleece contains the Wells crab-house!  It made Dave's day to see they serve a sea-food platter which includes lobster.  Sally stuck to her guns and had a cheese sandwich, which was billed as a door-step and was.  The fish and chips just didn't happen - that evening we snacked at the site on crisps and olives, sausage rolls and quiche.  Not nutritionally our best day!

Joe and Sally made good use of a funny little caravan spares shop in Wells to replace a couple of broken bits on their motor-home, so they were well satisfied.  Unfortunately George had a neurotic week, starting panting and trying to burrow his way to safety every evening.  He has always been OK in the MOtorhome previously, and we were unable to work out his problem.  After a couple of nights when he re-arranged the van and panted so loud that Joe and Sally couldn't watch their favourite programme, they took him to the vet and splashed out £25 on a pheromone collar.  They were warned it would take a couple of days to show any effect, but even at the end of the week he was the same.  There were some gun-like noises - possibly clay-pigeon shooting, possibly bird-scarers - but it seems odd he has never done it before.  If it is the pattern of the future it would put a stop to Joe and Sally's caravanning, as they chose this method of holidaying specifically so they could take George with them.

My tingling hasn't been very evident since last weekend, perhaps because it has been warm.  Getting my 'functions' sorted has been this cycle's problem; all a bit depressing, but hopefully I can regulate my diet better at home, and sit on my own loo!

Just a week until Mary-Ann and Dom come with the children.  I am hoping to cope better with my next cycle, so we can all make the most of the time together.  I don't want the boys to remember Grandma as tired and lack-lustre.  I hope they'll be comfortable about going off together as a family on my worst days.  We have bought tickets for the End of the Pier Show for Mary-ann and Dom.  I know it's not something they would spend money on, but we hope they will be abe to enjoy sitting back and being entertained and laughing a lot, as we have done when we went.

Managed to get away without emergency treatment yesterday, by the skin of my teeth.  My voice went very croaky and tight just as I came to the end, but no difficulty breathing or swallowing so they just kept me an extra half hour and even walked me outside to make sure I didn't react to the cold air.  As it was degrees warmer out there then in the hospital, I did that test very well!

My white count was below the requirement at about 1.3 on Monday so I had to have an on-the spot check before they gave me anything.  I had jumped to 8.5!  Apparently it dips very low and then climbs back up, and they find that last little bit after the end of tablets and just before the next infusion can be a rapid improvement.  Interesting that I am at my lowest ebb when I am just beginning to feel better, and we stop worrying about the possibility of having to make a dash to the hospital if I get an infection!

Had a lovely day with Mary on Tuesday.  She came on Moonday evening after her duties with Charlotte's after school care, so was able to eat with us and have nearly all day on Tuesday.  The day was broken up by by teleclinc call at 12.15, but we just pottered and dealt with soft fruit and salad, talked and drank tea and coffee.

Off to Doc's for blood test and medication review this morning so got around to taking some garden photos while I was staying clean and tidy.  They are on the Home and Garden page

Where does the time go?  Every day I wake feeling there's a whole untouched day in front of me, but although I feel I am busy all the time I never get through everything I intend.  Yesterday we shopped around for an archway on the internet after a leisurely breakfast, found one at B&Q and went off and bought it.  It only fitted in the car because I don't mind sitting upright - well, a few degrees forward of upright if the truth is told.  We happened on a 20% off garden sale, so that was good.  Then we went to Taverham for jam-jar labels and fruit and veg, and found gorgeous cheeses in the farm shop as well as elderflower wine and natural liquorice.  We had coffee and cake there, so when we got home started work on building the arch.  It was divorce material in the style of erecting the caravan awning, but we thrive on argument and we got it done in time for drinks on the patio, where we were joined by Steve and KAte.  They were gratifyingly impressed with our work, and invited us to their BBQ on Sunday.  When they had gone it was time for promised drinks in the summer house with Dot and Rodney and Anne and John from the new bungalow.  Then Dave made curry, we watched the beginning of Phantom on DVD, fell asleep and went to bed.

This morning I picked a big bowl of blackberries from the fruit cage after breakfast.  After church Dave cut back the forsythia on the pightle that hasn;t been touched for years and filled the two brown bins, while I pitted the last 2 1/4 lbs of cherries and simmered them before going to Steve and Kate's.  We had a lovely relaxing afternoon there, then came home and watered the garden and pulled up some weeds.

No word about symptoms, because there aren't any.  We are enjoying the rest of Phantom.  A lovely weekend,

Two days without chemo tabs and feeling pretty good.  Two things made my fingers tingle today: re-organising the freezers and pitting some more cherries outside while the wind was blowing.  It wasn't cold, but the cherries are juicy and I suppose the evaporation cools the skin.  I still have loads of cherries to do - I begin to be less delighted with the quantity we had this year!  Anyway, there were redcurants and blackberries as well, so I added another margarine tub of last years raspberries and cooked them all with sugar with the idea of freezinbg them in quantities suitable for summer puddings.

We have managed to reduce our freezers to three, and the new one isn't yet full.  Mum's old freezer which we took over when she moved into the annexe (mainly because it was full) had started to freeze up on the outside of the top, and with the hot weather and the porch getting so hot our electricity was soaring.  They are increasing our monthly payment by more than £10.  The little monitor supplied by British Gas was telling us our daily consumption was far higher than last year, and this was the only cause we could think of.  Hope it proves to be effective.  At this stage of our lives we need to be cutting down on regular expenses, not using more.

I am trying hard to regulate my functions by diet, but Dave hates vegetables.  I complained that the courgettes we had with our lasagne yesterday had not done anything for me, so today he bought pork steaks, then went down the garden and came back with potatoes, sweeetheart cabbage, courgettes, peas, baby carrots and a few mange-tout and runner beans.  Mmmm!  What a feast! (curry tomorrow.  I had better make myself a salad¬

Yesterday Dave picked the cherries, the most we have ever had thanks to the butterfly net he tied round the tree lasst week.  Usually I have to pick them slightly under-ripe to rescue them from the birds, but these were red and juicy.  I pitted 4lbs stoned weight and made 10 pots of cherry and redcurrant jam.  It was a very messy job but I do love squirreling.  I'll need to make some space in my preserves cupboard and throw out some ancient shrunken jams.  Our families eat my jam when they come, but I can never persuade anyone to take any home.

Last evening I went with some of our cell-group to Ashill, where they have set up a 'life-size' Hebrew tabernacle.  It was very interesting to get the proportions, because in the Bible the measurements are in cubitts and other such ancient things, and being able to go in and walk round and look at the the altar and the laver and the shew-bread table and so on was very different to just reading about it.  We had a guide, who was also doing a bit of a preach, relating the Old Testament symbolism to the fulfilment in the life and death of Jesus.  There was a lot of standing about, which I found a bit difficult, but worth making the effort.

Dave worked very hard yesterday, consequently very achey and  restless last night.  His car is still being mended but we are going to take a day out to wander round the town.  Haave to catch the bus in a bout ten minutes.  I'll put his doings in the garden on the House and Garden page later,

Very few symptoms so far today, first tablet free day.  The cooler temperatures affect my fingers a bit, but I probably wouldn't notice if I didn't know it was a side-effect

Tomorrow is my last day of tablets for this cycle.  Hardly any tingling today although it has been cooler, with some drizzle.  Yesterday it rained nearly all day.  I have been a bit low today, partly a come-down from the high of the weekend, partly, very stupidly, because I am already dreading next week's infusion.  How daft  can you get!  Instead of thinking - 'Wow, a whole week without tablets!' I'm thinking -'Only a week before it all starts again.'

The new Header took the whole of yesterday afternoon!  I thought I would try the new template feature and update the photo which was very out of date, particularly as the new page is supposed to be all about house and garden.  Unfortunately the different templates have different ways of incorporating pictures and text into the header, and I had no idea how Joe had done the original.  I finished up watching a You-Tube video, but even then I found my 'simple' template didn't concern itself with number pixels.  In the end I just made my strip of photo look right in a photo-editing programme, added the text on top of it and it worked after about six adjustments of size.  I like it, anway.  It is Sheringham park looking over towards Weybourne, with the North Norfolk Railway steam train in the distance.

Home again

What a fantastic weekend!  We really feel we have been on holiday.  Symptoms were minimal, a tiny bit of tingling carrying my fruit and juice to the table at breakfast time, and again in my feet when the wind blew on them this morning.  And some wind and bloating which was largely due to over-eating.  The food was excellent, but seemed to come round at shorter and shorter intervals.  Dave has been very active in the pool, playing tennis and table-tennis, so was always ready for a home-made biscuit at tea and coffee breaks, but I was pernanently full.  No-one's fault but my own.  I never could resist a pudding.

We were a group of 30-odd mostly middle-aged or retired people, a good mix of gender, with couples and singles and a constantly changing mix of groups.  I wasn't aware of anyone appearing to feel isolated, and several of the couples seemed to be consciously participating as separate individuals.  If it was indeed conscious it was a lovely, gracious thing to do.

We had four sessions with our speaker, held informally in the library where there was just room for us to sit on comfy chairs all round the walls.  Our speaker was a founder member of the Northumbia Community, which is a modern-day monastic community.  Their rule of life is vulnerability and availability.  They have a mother house in Northumbria where they seek a deeper relationship with God in a daily rhythm of prayer and Scripture based on celtic spirituality.  There is a greater use of symbolism than Baptists are used to, although we are gradually losing our prejudices.  So during our weekend we used candles, a holding cross, a cairn of objects representing our memories of the weekend, a knotted prayer cord and the familiar symbols of bread and wine.  Beauty and creativity are seen as being gifts of God, to be celebrated and allowed to lead us closer to God's heart.

We didn't have lectures.  Roy did talk to us at length about his own experiences, and in particular his love of Norfolk where his uncle and aunt prayed for him, their godson, all through his childhood and young adulthood.  In each session we actively particpated: a time of silent contemplation, an exercise of imagination as we walked through a Bible story, sharing our experience of the weekend in small groups, praying for each other, collecting the cairn objects, taking communion together.  Each day we used part of the Daily Office of the Northumbria Community. 

I didn't hear a negative comment.  I am sure the weekend meant something different to each of us, but it was clear that there was much for us to think about and work on as a community, both in the deepening of our own spirituality and in our relating to an unchurched world.  Living out our relationship with God is informed by Jesus, particularly by the Sermon on the Mount.

I hope what I have written is true to what we experienced over the weekend.  The Northumbria Community has a brilliant website which explains it better than I can, although it can't tell you what Dereha Baptist got up to over the weekend.

Very tired but happy.  Going to bed now.

At Belsey Bridge

Slept well until about 4.0.  We have an en-suite which is really more of a flat, with a kitchenette, shower, lounge and twin bedroom.  There is a mini-shop just up the corridor with an honesty box, so Dave fetched me a flapjack to have with my morning tea because breakfast is not until 8.30.  He has just come back at 7.30 after half an hour's swim, so is happy and ready for the day. 

Our speaker for the weekend is Roy Searle of the Northumbria Community.  His talk last night was a personal testimony of his journey of faith, and stimulated me to get up and look up the community on the internet this morning.  It is an ecumenical monastic community, but not in the way most of us think of monasticism.  It takes inspiration from the mediaeval northumbrian monks whose spirituality eventually spread throughout most of England, but without being in the least backward looking.  I don't know how much Roy is going to speak of this today.  Last evening we rounded off with Compline, a modern version, just looking back on our day and reflecting on it with God. Watch this space.

Good day today.  Now installed at Belsey Bridge where I have connected to their internet so can blog and check e-mails.  How fantastic!

Supper is haddock something or other or vegetarian, which suits me fine.  It's at 7.0, in half an hour, then we meet together at about 8.0.

Dave has had about an hour in the outdoor pool which was about 25deg, felt cold on going in but nice then.  Temperatures here around 31.

Chemo2, Day 8

Much better today.  Tummy still sore, but not woozy or sleepy.  No tingling after shower, but it didn't like picking soft fruit first thing this morning. Much cooler today and a useful shower of rain this morning.

Mary-ann's phone-call yesterday reminded us that it was our wedding anniversary today.  Last year we bought a card between us - this year we didn't even do that.  As we said to each other, if the last few months haven't proved that we love each other a card wouldn't make any difference.  Anyway, having been reminded we asked Dot and Rod to have a meal with us, and this morning I made a summer pudding for dessert.  The juice didn't quite soak the bread, but it was delicious.  Strawberries, blackberries, blackcurrants from the fruit cage, last year's raspberries from the freezer and a few left-over cherries from the market.  I also picked 2 1/4 lbs of blackcurrants and made 6 pots of jam, so obviously I am better.

Off to Belsey Bridge conference centre at Ditchingham for the weekend tomorrow.  Church 'holiday'/retreat.  I shall probably take the lap-top for security reasons but although therer is internet access I don't know if I will be able to connect.

Chemo2, Day7

This is my third unpleasant day.  Day 5 and 6 I was very tired, just wanted to keep lying down to go to sleep.  I lost 6 lbs too, presumably from diarrhoea and dehydration, but because I can only drink warm things and I feel a bit sick, I didn't want to drink either.  The worst thing was light-headedness which made me feel I was going to keel over.  Dave hasn't been too good either, with some sort of tummy upset, so we have done what was essential and laid about a lot.  I didn't think I was going to be this pathetic, but I was warned.

Today I am less tired but my tummy hurts and is even quite tender to touch.  I have helped myself to one of Dave's ulcer tablets for the last two days, which usually work like magic, but they don't make a lot of difference so I am resigned to another day of rest.  The cold sensitivity is still there, but not too bad indoors, and I had some sips of cold drink yesterday without ill-effect.  I am still getting a bit of jaw spasm when I start eating and when I put toothpaste in my mouth.

What a miserable tale!  I am not looking for sympathy, but next cycle I want to be able to check out the pattern.  Sorry, Mary, but as you say that is how I am.  I also want to know the mechanism of these symptoms, because I feel if I knew what was happening in there I would know how to make it more comfortable.

I did manage to get two sketches off to Mary-Ann for Joe's cabin bed, a pirate ship and a bed in a tree.  The Lightning thing was Lightning McQueen, a Disney car that I knew nothing about whose main feature seems to be a huge grinning radiator grille.  This wouldn't show on a profile, and a front view would have him climbing in over the bonnet, so I opted out of that one.  Mary-Ann says that neither Dom nor her can draw, but they are going to have to paint in the detail, so it is going to be very interesting.  Mary-Ann has always had someone to do it for her - Ruth, who painted amazing Dragonlance scenes on the sliding wardrobe doors in their teens, Rachel at college and me decorating the children's rooms here.  I think she may find she discovers hidden talent when she has to get stuck in.  Little Joe has spent his spare time this spring making cards.  His favourite theme is a collage of letters.  He knows all therir names but Mary-Ann is determined not to force him into spelling and reading before he goes to school, so to him they are just interesting and varied shapes.  I don't know if any particular thought goes into the arrangement of shapes and colours but they look fantastic.

I think I'll attach the cabin-bed plans, as they do prove that I am not just laying about feeling precious. Don't know if they are clear enough to see.

Chemo2, Day 5

Not so good today.  Awake from 4.0 again, very uncomfortable and not able to produce anything on the loo, which I put down to the still-narrow anastomosis, but then had diarrhoea 5 times so maybe it is chemo side-effects.  I spotted a blackbird busy in the cherry tree while I was washing up, so left the sink and went down the garden to either hang dazzling CDs around the branches or throw a butterfly net over it.  By the time I realised I couldn't find the tall steps or any CDs, I had had to return to the bathroom twice, so I have given up.  If we don't get cherry and redcurrant jam this year that's too bad.

I didn't record anything on day 5 last time, but I think it may have been a not-nice day.  It is easier to cope if there is a pattern, but I have already forgotten what it was like last time.  The good days at the end of the cycle make the bad ones fade, which is excellent, but can make you discouraged next time round.

Just a quickie to remind myself how I am at 4 days after infusion, because next time we will be away at Weybourne in the caravan.  The tingling hasn't been too bad, but I think most of that is thanks to the very warm weather.  I notice it if I forget to put gardening gloves on before I hose the garden, and this morning I had hoped to go to church in shoes with no socks, but found I was too tingly so had to resort to pop socks.  A friend from our cell-group has knitted me two delightful pairs of stripey socks which are perfect protection during the week with my crocs (although not 'cool'), but I didn't think they would enhance my summer dress!

My guts have still not settled, and really cause me more distress than the chemo.  I was up five times between 9.30 and 4.0 am last night, not that anyone else wants to know that but I want to be able to compare notes in the next cycle. 

We are having plenty of fresh stuff from the garden: broad beans, peas, potatoes, courgettes, lettuce, cucumber, radishes, rocket.  We grew potatoes in special bags this year, and put the left-overs in a patch of garden.  The bag ones are brilliant, and the garden ones remind us of why we stopped growing potatoes - diseased, small, five or six roots needed for a meal.  We didn't use the little access flaps at the bottom of the bags - by the time you get your hand through you are at such a funny angle you can't really feel around for the potatoes  When we first tried we thought we hadn't got any.

We are having to water every evening, flowers and veg.  It has been such a dry spring and early summer and what rain we have had hardly moistens the surface.  I am disappointed with my flower border, which lacks colour and is full of gaps where the forget-me-nots were pulled up and nothing else has flourished.  The pictures from last year are so colourful.  I got fed up with the love-lies-bleeding, but at least they filled the spaces.  We seem to have spent a fortune little by little at nurseries and on the market buying trays of geraniums, begonias, pinks etc, but nothing is any bigger than when we planted them.  The perennials with established roots are only marginally better, but I think I will try to be proactive in the autumn and get some stuff in that is less labour-intensive.

Dave has been trying to get the patio finished.  The part where the mobile was is still rough ground and there are two large mounds of clay where we had the soak-away dug.  Will is coming next weekend to fill a skip and level it off to the orchard so  we can re-seed and get things looking a bit more loved.  Once we have finished with heavy plant we hope to get the drive re-surfaced.  We were hoping to get an estimate for resin-bonded shingle, but don't seem to be able to get a response from the agent.  An internet comparison site promised to send us estimates for tarmac and brick-weave, but nothing is forthcoming.  In any case I have been put off brick-weave by the sight of my neighbour spattered with black from her hair to her toes as she power-washed her drive this week.  She still has to weed-kill it.

Anyway, there is now continuous slabbing from the back patio to the playhouse.  It has a little slope down, so we visualise the children crashing their bikes and cars into the door at great speed, but we decided it was preferable to a step which they would trip on every time they go up or down.

This is not a quickie!  I have to design a bunk bed for little Joe, either a tree-house, or a somebody lightning racing car or a pirate ship.  (I know its not Buzz Lightning, but I can't remember the latest fad.  Probably Google will give me a clue.)  I asked Mary-Ann how big is a sheet of  MDF but she has no idea.  She wants me to come up with a design and then her brother-in-law is expected to realise it with his jigsaw.  I'd better get onto the internet and look for some inspiration.

Second Cycle

Had the second infusion today.  We left before eight for our nine 0 clock appoinment, because of the Royal Norfolk Show. Made good time, and my infusion was up and running by 9.20.  The coffee supplied by the volunteer team was very good, and the mini-electric blanket wraapped round my drip arm kept the symptoms at bay, although I was aware of tingling when I had to walk to the loo.  I should have remembered that people with high blood sugars make loads of wee!  What with that and the coffee I had to make three trips.  Experienced people walked their own drip-set, but Dave pushed mine and came with me, which was a great help once I started to get cold sensitive, as all the handles and taps are metal, giving an unpleasant shock when you forget.

After the first hour the electric blanket started to cool off and my whole left arm became very sore and tingling.  I did wonder about asking for a re-charged one, but didn't want to make a fuss.  At least this time it was  my left arm, so I carried on trying to solve a Codeword and waited until the last drops had been run through and the glucose washout bag was dripping. Altogether it was about 3 hours before I was disconnected and the nurse sent me on a little trial walk.  I knew when I came back that I was going to be a long time getting out of there.

Same symptoms as last time, but worse.  Voice croaky, dry crisps in the throat, hot flush, and this time very trembly and wobbly.  On came the anaphylaxis pack and this time I had the intravenous piriton and yet more steroid.  How come after all these years in medicine I didn't know intravenous steroid given quickly gives you tingling in your scalp and bottom?  No adrenaline though, so it was all precautionary.  The nurse said it isn't an allergy, more of a variable side-effect, but she did call the doc who suggested next time I should have two days of steroids in advance, and be seen in the oncology clinic before my next infusion to discuss whether I need any changes.  The dose is worked out on surface area, calculated as a factor of height and weight.  Those measurements were done at the first oncology appointment which was way before my anastomosis got stretched, and I am pretty sure I lost weight since then.  While all this stuff was going on the nurse mentioned that the hot blanket is on a one hour timer and just needs to be switched off and on again to re-heat it!  Good news for next time!

We eventually got away just before two, and I went straight to bed for a couple of hours.  I had difficulty walking at first, a bit drunk on the 10mg piriton, but had a sleep and feel not too bad.  My lovely warm laptop has allowed me to catch up with my blog.  I know this is too much information, but it will help me to monitor how things are going.  I feel a bit like an invalid today, and it is nice to be able to look back and see that I did in fact shovel gravel last week!

I have been very brave and had a photo taken of me actually on chemo day.  I think I did look better last week out in the sun, but I am by no means fading away!

Tomorrow is my last day of chemo tablets for this cycle.  Hardly any side effects now.  The tingling comes back if I try to wash vegetables under the cold tap, but is hardly noticeable most of the time.  I was out in the garden all day yesterday, only a little of it with my book.  I made a good clearance of weeds in the fruit cage, and discovered a few strawberries struggling to see the sun.  I shifted two barowloads of gravel from the centre path that friends used to rudely call our runway, moving it behind the shed at the bottom of the garden.  We have laid membrane there, and it will be a useful out-of-sight storage area.  It will need weedkiller though because although the path was laid on membrane, years of digging and weeding round it have mixed soil and organic matter with the gravel.  It wasn't our best design feature!

I was very good with my Factor 30 on my face, long sleeves and gloves, but forgot my eyes.  Either I got soil in my right eye or burnt it, so I'll need to find my sunglasses today.  I hate working in glasses - they keep falling off!

What I really wanted to record today was a psychological shift.  I realised that I no longer take my chemo tabs with a feeling of self-harm, but as routinely as the handful of vitamins Dave used to give me every morning.  I do a rather odd thing though: I was told that no-one must handle the tablets except me as they absorb throught the skin!  Imagine swallowing 3 tablets that would damage someone else if they touched them!  So to make sure I don't contaminate anything I split the foil with my nail and take the tablet straight into my mouth.

Day 10.  Yesterday morning I phoned my nurse contact in the oncology dept to ask at what stage I should be concerned that the tingling had not gone.  She said that if I still had it by the time of my teleclinic appointment the day before my next infusion, I should mention it and would probably need a reduced dose.  Having done this I went out into the garden and stayed out there all day, gardening in gloves (which I have to anyway to guard against injury and infection) and thick woolen socks.  I had next to no tingling all day.

I did some very satisfactory gardening, weeding the new flower-bed round the patio, planting out some plants I had grown in the greenhouse and mulching with a layer of compost.  Dave has dismantled the compost bin, moved all the mature compost to the bottom of the garen and re-built the structure complete with hinged lid!  The soil on my flower bed is very poor and dry, I have been having to water nearly every day, so hopefully the mulch will prevent too much drying and give the new plants a chance.  Unfortunately the compost became available after I had done some planting out, so I have probably buried some of the seedlings, which are really too small but had come to a standstill in the greenhouse.

I was also able to do some re-designing.  Last summer it was a question of cultivating the land the builders had churned up, and filling it with whatever came to hand.  The planting round the stream is looking quite good, but the foreground had numerous seedlings of catmint and some sort of mallow.  The latter have grown very tall and are just beginning to show colour, which is not the deep red I was hoping for, so I have dug most of these out.  It is now nearly nine weeks since my surgery.  No-one gave me any advice about what I could do, so I have decided a bit of digging won't hurt.  I am fed up with having to ask Dave to dig out individual roots of buttercup and unwanted plants, and worrying about where he is putting his feet.  I don't appear to have done any harm.  Shovelling compost on the other hand found a muscle that didn't want to be so busy, but it will recover and be the better for it.  It's a novelty being an invalid, but novelty wears off!

Anyway, the tingling has hardly been any problem for two days.  I find I am still nervous about drinking cold things, and fancy my throat prickles.  I am still taking a flask to bed with hot water, and taking my tablets with water from the kettle, but that's my neuroticism rather than a side-effect.

My car is sold and gone.  I haven't driven it sinnce hospital, and so am unlikely to miss it.  It does mean I can't go any distance off a bus route without Dave, but I don't think it will be a problem.

Just a quickie, typed clumsily in gloves.  Each morning I wake thinking the tingling has gone, I can even touch the cold wall behind my head with the palm of my hand, but by the time I have showered it is back with full force.  I talked to our friend John yesterday, who had exactly the same treatment last year, and found that he had the jaw spasm with the first mouthful of each meal.  He still has some tingling of the hands and feet some months after completing treatment, but says it is gradually improving.

The good thing is I have as yet no nausea or diarrhoea, which means I don't have to be housebound.  I have made it to church the last two Sundays and expect to go tomorrow.  We are booked into the church holiday July 8th and have negotiated a twin ensuite so I don't have to worry about the fact that my functions are still a bit unpredictable.  Everyone is so kind and helpful, including neighbours who I hardly ev er saw when my life revolved around work.

I haven't driven since the op and have no desire to.  The car is all cleaned up and several people hav e exprewssed interest in it.  I must start to drive Dave's car at some point so that I don't lose skills, but no hurry.  I am still rather scatty which in retrospect I think has aways happened after anaesthetics, and of course I have had quite a lot of major stuff to focus on.  Because I have retired I can take everything as it comes, and I love that.  Shedding responsibility has been one of the truly positive aspects of all this.  We are going to have a go at the conservatory today, where I know there are piles of unread papers and journals which I shall dump in the recycling bin with great jo y.

Dave is watching Rugby and cleaning the living room, so I had better post this and tidy my office on the Chesterfield.

Chemo day 2

I survived my first intravenous infusion yesterday and started the 2 weeks of tablets today.  I am also taking steroids for 3 days, not entirely sure why.  The nurse gave me a dose of steroid into my cannula and said it was to make the chemo hit the spot better.  She warnd me I might not sleep too well after it, and indeed I was a bit restless but nothing disastrous.

At the end of my two hour infusion I had a sort of hot flush and took a swig from Dave's water bottle, bought when we arrived at the hospital 3 hours before, so at room temperature.  One of the possible side-effects of the drug is laryngeal spasm, and it also makes you very sensitive to cold.  Even as I was swallowing I felt my throat closing up and feeling like dry crisps stuck in it.  The I tried to breathe and made a noise, at which stage the nurse attending to the patient in the next bay asked me if I was okay and I had to admit I wasn't.  Suddenly I had three nurses focussed on me, no panic but blood pressure taken and the anaphylaxis box of tricks placed on my table.  I didn't need it, but it meant I had to stay an extra half hour to make sure.  This turned into a full hour because all the nurses involved went to lunch and no-one seemed to think it odd that I was still sitting there with a cannula in m y hand, the anaphylaxis pack at the ready and no drip running.  Actually I was in no hurry to go home after that experience - no adrenalin at 38!

They told me that for me room temperature was not enough, and I should have only hot drinks for 5 days to avoid triggering another episode.  This suits me well, apart from having to take a flask to bed.

My main identifiable side effect is the tingling of hands and feet, which I was warned about, and told not to use the fridge or freezer as cold makes it worse.  What a joke!  The carpets feel like ice through my socks, my bed is freezing, I'm having to use Mum's fat-handled cutlery warmed on the Rayburn, and wear gloves most of the day.  It's supposed to last 3 days or so, but bearing in mind my extra sensitivity to the room temparature water I am not banking on it.  It's called peripheral neuropathy and if it doesn't resolve I have to report it because there is a small chance of it becoming permanent.  That would cramp my style!  Interestingly I have typed this with no problem, probably because my laptop has been running most of the day watching the webcams on Springwatch, so it is nice and warm.

I have one side-effect that is not listed on anything they have given me.  The first mouthful of anything tasty that I eat produces breath-holding pain in both jaws.  It reminds me of the mouth-drawing effect of tasting something acidic, but multiplied about 100times.  My guess is that it is an efect on the parotid glands.  It lasts about 5 seconds and then I can finish the meal with no problem.  I need to mention it at my telephone review before the next infusion.

I doubt if any of this is very edifying to anyone else, but you'll have to forgive me for making this record in case any of it is important later.

I managed to make a teaching clock to go with the watch we have bought Joe for hiw 4th birthday on Monday.  I made the face with a printout of a free clockface from the internet, mounted on  thick card with a second strengthening square of card underneath.  I decorated it with scrapbooking motifs and Dave made the hands.  We even managed a trip to town to buy sticky-backed plastic to help make it child-proof.  I managed pretty well with my tingly fingers, but Dave had to help with the wrapping and selotaping.  I had an hour in bed this afternoon and that was when I was almost symptom-free.  Speaks for itself I suppose!

You never know!

I have just re-read my last blog, which was largely ruminative about how I am going to spend the rest of my life, whether I was going to retire from practice, whether I would get involved in work for Alzheimer's.  I didn't know then that I had bowel cancer.  I had been under investigation for a bit of pain and constipation since October, had seen the gastro-enterologist, had a barium enema which was reported as normal and was waiting for review.  The week after that post wasn't good, with pain waking me at night, and not much activity in the bathroom.  I saw the specialist on the Wednesday and he thought it was time I had a CT scan, and by the Thursday I had an appointment booked for the Saturday.  By Friday I was completely obstructed and admitted to hospital as an emergency, only to find the CT scanner, brand new, had broken down and due to the ash cloud the spare part was being driven from Germany! 

In the event the machine got mended by Saturday afternoon and I was first on the list, and at last I had my diagnosis.  The next day I had open surgery removing the cancer, part of an ovary to which it was stuck, and joining up the cut ends of my colon. After a week they sent me home, and I spent the next five weeks gradually realising that the join wasn't functional.  Eventually I had appointment with a fourth consultant who managed to do the necessary stretch and I am now supposedly fit to commence chemotherapy in three days time.

So - I am now officially retired, and indeed no longer registered or licensed to practice medicine.  I am enjoying spending most of my time in the garden (without feeling I should be reading medical journals), reading light novels, eating and sleeping.  Unfortunately I have  got past the stage where people say: 'should you be doing that?', so I have come through the delightful stage of convalescence and must get to grips with this next stage of my life.

I haven't gone through the 'why me?' thing, we all have a limited life-span and have to die of something.  Given the choice, I would prefer not to have Alzheimer's and have sort of prayed not to get it, so I can't help suspecting this may be God's sense of humour.  That's OK, I am totally out of control here, and can only trust that he will see me through the 'deep water'.  I have been surrounded by prayer, and been upheld and calmed by it. I have no idea whether God plans to show his power by healing me or whether this is the beginning of my particular last journey.  My prognosis, taking account of the chemo, is a 50 - 55% chance of surviving 5 years.  That really puts your life into perspective.  It links with the family tree I have been doing for the last couple of years - all those people living out their important, significant lives, all confined within a life-span.  We only get one shot at it.

What will happen to this blog when I am dead?  Will it be frozen in time on the internet?  There's a thought!  A time-capsule of thoughts and experiences.

Enough!  Mary, you are probably the only person who still reads this.  I do hope you don't find it painful or morbid - I don't.  I am writing with one eye and ear on Jonathan Dimbleby's African journey, and there were clips of the ethiopian famine in 1984.  Now that's a different slant on it! What a good, easy life we have had.  I have had some pain for a week or two, but you can't call that suffering.  Well, let's see how it goes over the next few years.