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!