Glad to be alive

Sunday morning, 5.30 am
I am having a great weekend.  On Friday I lost a stone in weight, yesterday I gardened in the morning and then we all went out in Big Red to my writing buddy Angela's book launch in her garden at Wereham, near Downham Market.  Today we are going to the early service, having a big brunch with Big Joe before he goes back to Stone, then maybe a trip to the coast for chips.  Oh yes, and on Friday I was told the cancer is active again.  I need to fill in some stuff about the last month to make sense of this!  Apologies to my followers who are not interested in medical case histories.  This entry is mostly for me, to record what has happened and start me off on some thinking.

I was short of breath before we went to Wales, and feeling a bit suffocated when I lay down.  The GP listened to my chest and found nothing, but put me on amoxycillin for my sinuses.  It seemed a bit better.  When we got back from Wales I had put on half a stone, and my tummy was noticeably extended.  I haven't worn trousers with a waistband since.

On the Tuesday after the early May bank holiday I saw my GP urgently and he faxed my surgeon with a provisional diagnosis of adhesions causing partial obstruction.  The following Monday I saw the surgeon at Cromer hospital, (too uncomfortable to take in a look at the sea while we were there,) and he also muttered about adhesions, said there was a bit of fluid which he had previously seen in cases of adhesions, and requested a blood test and a further CT scan.

I assumed the scan would be urgent, and so began  the worst period of this whole cancer journey.  Day by day as I waited I got bigger, heavier, and more tired.  The worst thing was that I could only relive the pain in my back and abdomen by lying completely flat, so from last Sunday I was virtually bed-bound, anxious about thrombosis but unable to grin and bear the pain of being vertical.  I slept a lot.  On Monday I rang the surgeon's secretary, only to find she was on annual leave.  I left a message on the answerphone and received my scan appointment for Tuesday.  You have to sit in the radiology waiting room for an hour drinking a litre of contrast medium to make the scan clearer, but after ten minutes Dave had to ask if I could lay on a trolley.  After the usual trouble with my vein, for the intravenous contrast, I had the scan and the radiographer told me the result should be with my consultant later that day or the next day.  Home to more bed.  Also the surgeon had mentioned I might be more comfortable on a low-fibre diet, so I was eating very little.

On Wednesday afternoon Dave left a message on the surgeon's answerphone to say we had been led to expect a phone call from the surgeon as soon as the result was through, and that I was extremely uncomfortable.  A stand-in secretary phoned him back and promised to leave a note on his desk.  At this stage we were still working on the assumption that I was obstructing.  I felt physically weak, in pain and very tearful.  I had less and less faith in the diagnosis.  I was at least ten pounds heavier than my normal, in spite of eating hardly anything, and self-examination supported a diagnosis of fluid in the abdomen.  (Ten pounds is an awful lot of poo!)

On Thursday Mary-Ann was at home, and started to bustle.  "You've got to get to hospital, Mum.  I am going to ring the doctor."  My GP rang me later in the morning and I told her the sorry tale, together with my conviction that we were dealing with an accumulation of fluid known as ascites.  She chased up the scan report via the radiologist and came back with the news that I was right,  there was ascites consistent with metastases (secondaries).  She had made me an appointment in the oncology department to have it drained off the following day.

So, back to oncology.  It was easy to say I was glad to be rid of the oncology department when I felt well and my scan was reported normal, but on Friday it was the best place in the world.  I arrived on a stretcher, so I could lie flat, and the ambulance-men were very patient as we trundled back and forth around the cancer end of the Norfolk and Norwich, looking for someone who was expecting me.  Eventually we found our allocated spot, a young doctor I had seen once before put in the drain and a familiar nurse from Weybourne Ward repeatedly emptied the bag into her measuring jug, then prodded  me and turned me on my side and encouraged me to have a wiggle until no more drips would come.  She totted up the total to 7.125 Litres.  It took just under an hour.

My poor bowel had pretty well gone to sleep over the previous week so I was given three lots of medicine to get things working again.  This is still in process, so I am not completely comfortable, but I can sit, stand, garden, knit, read stories and talk without weeping.  Today we have blue sky again; a day to be savoured and shared with enjoyment.

The most amazing thing was that my oncologist, who has irritated both of us to the point where Dave wants to punch him, came in while I was still flat on my back and we had a really productive conversation.  He explained that he would be offering second-line chemotherapy, and how difficult it is to get the drugs into the peritoneum (Slippery bowel covering) because of the poor blood supply.  The treatment lasts six months again, so it would be the third year in a row half-filled with chemo.  When I said it was a long time out of an already shortened life-span he agreed, and said how sorry he was that the cancer was back.  I felt sorry for him, and to cheer him up I told him I was getting on with things and had a book coming out at the end of next month.  His face lit up and he wanted to know all about it, then went on to ask me how long ago I retired, and we parted on very good terms.  What a turn-around.  It occurred to me later that it must be very difficult for them to know where patients are coming from in their cancer journey unless we tell them.  There is a big divide between quantity and quality of life that is very easy to slip into, and at this stage I think we have to get the balance right, and make sure those treating me know what our priorities are.

I have all the 'gen' on the three drugs under consideration.  The treatment would be either all three or two of them.  I haven't read it yet, but will do before we go for a discussion on Wednesday.  The doctor assures me that we won't need to make a decision then, we can have a few months grace if we choose.  It would be nice to have a relaxing summer, and there are various things on that I don't want to miss.  We have a lot of thinking to do, and as much living as we can cram in.