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.
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