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.

Darby and Joan

The fact that I haven't posted for weeks doesn't mean we have vegetated, although life is rather different when we don't see children or grandchildren.  I am now suffering my 5th cold since Christmas, and am distressingly deaf with this one.  I had extra work in January at Orchard surgery in Dereham, which helped with the shock of only working one half day a week, but not much extra since then.  I am still thinking my swan song is going to be something to do with Alzheimers and Specal, the method of care pioneered at Burford which I am still sold on.  I get favourable responses from various people who will be involved in implementing tha National Strategy, but it all moves very slowly, and if I keep myself available much longer I am in danger of spending a huge proportion of my earned income on the costs of working: medical protection, GMC registration, accountancy, travel and keeping up to date. 

So what have we been doing?  Well, the garden is not finished, but this has been the first week with a decent amount of good weather.  Over the weekend we have been working on the soak-away next to the playhouse, which will hopefully drain away the roof water from the back of the house.  It used to go into the pond, which was lost to the building project.  A lovely builder who is building himself a bungalow in Larner's drift got his son to bring the digger round to dig the hole a couple of weeks ago, so yesterday I heaved a few tons of broken concrete into it and Dave cut a groove across the drive and installed the pipe.  When we get our breath back we need to finish filling the hole and then pave the surrounding area.  LAst week Dave put up some very superior fencing to hide the collection of refuse and coal bins now sited along the workshop wall.  I moved all my clematis from the central path with the arches, so if they survive the late move they should look lovely by full summer.  I had cucumbers and two kinds of tomato thriving in propagators in     the greenhouse until yesterday, when we were so busy I forgot to take the tops off.  They overheated and everything is dead! 

My other interest in the lastt six months has been making books.  First, the book about my Mum, which I had done by Blurb.com for sibling Christmas presents, followed by 'The Little Wooden House' for the children, to whet their appetites for the playhouse.  I also made a book about the seaside mural on the blue-room wall, so Joe wouldn't be disturbed by the new decor.  I made and bound this one by hand using a method learned at my scrapbooking class.  Then Dave's Mum died and the funeral address was so beautiful I used the words on one side of the double spreads, with the story of her life as she told it to me on the other, together with a collection of photographs collected over the years.  Blurb made this one as well, in the same format as the Trudie book.

During Advent I had gone to our local Christian bookshop for a nativity book for the boys, and wasn't over the moon about the only suitable one I found, so that was my next project.  I worked with Mick on this, as he is running a successful printing workshop with a friend.  He showed my how to set up my desk-top for 'full-bleed' printing, and to send it on to him as a pdf file.  He has produced a sample which is wonderful - makes my water-colours look better than they really are!  I gather my style is 'naive', although at first I took that as a criticism.  I can't see how I can have a style with a proper name when I have had no training and don't entirely understand what I am producing.  Well, maybe that's what naive means!  Anyway, the nativity book is well underway, and Green Pastures has already agreed to have it on their shelves at Christmas.

Before I had seen the finished article I was already at work on a book about when Grandma and Gramps were little.  I started writing down ideas for this in a hard-cover book I was given a year or two ago, but when I actually saw it as a book for little children I realised they would maintain interest for about two minutes!  But making a picture book about things you remember mainly as concepts and negatives is not easy.  There are lots of things we didn't have which our grandchildren take for granted, but how to draw the detail of what we did have!  For instance, we didn't have supermarkets, self-service, pre-packed foods, freezers or electronic tills, but what was standing on the counter?  What did the bins and barrels look like?  I am not trying to make accurate pictures - the ones I have done are a combination of memory and imagination, and with a few exceptions are not representative of our family or our house.  Mick thinks it will not be a book for children but for nostalgic adults of our age!

Today we took time off from both garden and books, and went to Pensthorpe, the waterfowl place near Fakenham.  We had a lovely walk, not worrying too much about identifying the various ducks and geese, but enjoying the sunshine and blue sky which was reflected in the acres of water.  We had lunch there, then home via Fakenham Garden Centre, where I failed to replace my Greenfingers cucumber seed, and Podmore, where the Quadlings were in the 1800s.  It was disappointing, no line of labourers' cottages as I had expected from the census returns, just a few individual houses that looked rather expensive.

Well, this has been a very self-absorbed catch-up, not sure if it is of any interest to anyone except us.  I'll post a nice view from Pensthorpe and close.