Chemo 1, Round Three

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

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

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

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

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

Now to catch up with some pics.

 Taken on May 25th - 2012, not 1969!










                                                                                                               

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

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

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

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

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

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

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

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

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

www.runningharepress.co.uk 

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

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