Wednesday, 28 September 2011

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

Day 1 (again!)

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

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

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

Sunday, 25 September 2011

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

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

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

Tuesday, 6 September 2011

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

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

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

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

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