Monday, December 31, 2012

On New Year's Eve

It's been a strange Christmas, all warm and festive and in some ways very enjoyable, but always with the lurking realisation that it could well be my mother's last one.

Today she started chemotherapy at the excellent Bexley Wing of St James's Hospital in Leeds.  So far, everyone there has been a model of best practice - kind, welcoming, thorough, knowledgeable - and hence there has been none of the panic from my mother which has characterised previous hospital visits.

She was sitting in a comfortable recliner armchair and they put a cannula in her arm to deliver the drug.

First they sent some saline through it to check it was working properly, and then after about ten minutes they started the carboplatin.  It took about half an hour to go through.  It did make her very cold but we worked out that this was because it had been in the fridge and she now had a chilly drug flowing through her.

After a little while she said that she was hungry so we got her a coffee and a tuna sandwich - it seemed quite incongruous to watch her eating it with the drip in her arm.

There were about ten people in the room having similar treatment, many - like my mother - with their families round them.  My mother had my brother, her gentleman friend and me.  I felt sorry for the ones who were on their own.

As each person's treatment finished, the machine that was using made a little pattern of beeping sounds, a bit like the spaceship in "Close Encounters of the Third Kind".

Mum never did work out where these beeping noises were coming from, but she took great exception to them.  Her indignation every time a machine beeped was providing amusement to some of the other patients and definitely lightened the atmosphere in the room.

After a while she got fed up of keeping her hand still and kept bending her wrist, which caused the tube to kink and the alarm buzzer to sound.  The kindly nurses patiently kept restarting the machine, but Mum couldn't really understand why she needed to keep her hand still.

"Mum - - no - - don't move your - - oh.  Too late."

Finally she was done and released to come home, where she fell asleep but is now awake and seems fine.

It can, however, take a while for side-effects to show so we'll be keeping a close eye on her and they have given us a twenty-four-hour number to ring if we have any questions or concerns.

I've never liked New Year's Eve:  all I can ever think of is all the sadnesses of the past year, and I find it hard to count my blessings and think of all the good things, and then I get cross with myself for being that way and I get even sadder.

This year is, in a way, the saddest of all.  But it doesn't totally feel that way because of all the warmth and love and care that my Mum is getting from many different people.  So no matter what happens, I will always remember that.

I wish you all a very Happy New Year: thank you for reading my blog.

Sunday, December 16, 2012

Fat Cow

I went swimming today, for the first time for about three weeks, and I loved it.  I always love swimming, except for that one time.

That one time was about twenty-two years ago.  We were staying in a cottage in the Lake District and the owners had done some kind of deal with a nearby hotel so that the people staying in the cottage could use the swimming pool.

I had Olli - who was then a baby of about eighteen months - with me, and my mother, and the Communist - I don't think Stephen was swimming that day.

When Olli was ready to get out of the pool, my mother kindly looked after him so that I could swim on my own for little while longer.

When I finally came out of the pool, there was a mother and a little boy - age four or five - in the changing room.  It was one of those open changing rooms with no curtains on the cubicles.

The little boy looked at me.

"Fat cow," he said.

Now then, okay, I'd recently had a baby and had put on a bit of weight but I wasn't THAT big.  I was about a size eighteen.  But because I had been slimmer than that before my pregnancy, I was definitely sensitive about my weight, especially when trying to get changed in an open changing room with this child staring at me.

"Fat cow," he repeated.

So I waited for his mother to say something: to reprimand him or simply to scoop him up and take him out of there, with an apology to me on the way.  If that were my child, I thought, I would want the ground to swallow me up.

She said nothing.  She continued to dry herself.  The little boy was already dried and dressed.

"Fat cow," said the little boy, again.  "Look at the size of that.  Fat cow, eh?  Fat lazy cow.  Why's she out, looking like that?  Fat cow."

The mother continued to get dressed, and to say nothing.

I didn't speak either.  I was mortified.  I got dressed as fast as possible, fled the changing room and kept the whole incident to myself, for years and years and years.

This afternoon I told my brother about it.  Why on earth would a child of that age say something like that?  Where had he heard those words?  Why did the mother remain silent?

Although I found the whole incident very creepy, and it haunted me for years, I don't blame the boy.  Something deeply unpleasant was going on in that child's family, I'm sure.

The boy will now be in his late twenties.  I find myself wondering where he is now, and how he turned out, and what happened to him, and what happened to his mother.

Tuesday, December 04, 2012

Thank You, Bexley Wing Ward 98

For many years now I've been involved in Communication Skills teaching to doctors and other healthcare professionals such as nurses and pharmacists.

More recently, I've been teaching on a course for medical students which includes such topics as patient safety and professionalism.

During the Communist's illness four years ago I noted with despair many incidents of unmotivated, careless and uncaring staff and some of these incidents I have been using as teaching materials for the students.

Today, at the Bexley Wing of St James's Hospital, Leeds, they gave me a glorious example of how things SHOULD be done and I felt like cheering.

My mother was there for a CT scan-aided biopsy.  She has a tumour in her abdomen:  that's all we know really.  Today's procedure was to find out what it is and how far it's spread.

It's a newish unit, all sparkling clean and we (Mum, her gentleman friend and me) were shown into a large single room with a bed, chairs and its own bathroom.  They greeted us all with offers of tea and coffee, which we gratefully accepted and which arrived at top speed.

Mum had to drink some fluid before the scan to show up on the scan, and also she had to have a cannula put in.

The nurses talked her through everything.  They introduced themselves, were warm, kind and positive and happy to explain everything several times.

She had to get changed into a gown and then transfer to a trolley and at all times when she was moving about they carefully checked that the door was closed so nobody could see in.

A friendly porter took us down and then another nurse explained that the procedure would take about half an hour so Mum's friend and I could go for a coffee.

When we came back I knocked on the door (as I'd been asked to do) and was told that Mum would be out very soon.  And so she was.  The radiologist came out and told us that the biopsy had gone very smoothly.

Mum had no pain from where they had put the needle in her abdomen to take the sample.  Another friendly porter came and said he'd be taking her back to the ward "in two minutes".  Then he came back in two minutes and explained that there'd been a slight delay with the paperwork so it would be two more minutes.  Such attention to detail is so helpful when you're in a strange place and don't know the procedure.

Back on the ward, Mum - to my amazement - declared she was hungry and a meal instantly arrived.  Chicken soup, fresh ham salad and sponge pudding and custard.  Of course she couldn't manage all of it but it was excellent quality and she loved it.

She had to wait for four hours to make sure she hadn't had an allergic reaction or any bleeding.  Mum wanted to get home and got a bit impatient but the staff were so lovely to her that she stayed calm.  She was simply not the same person as the hospital-phobic person she usually is.

Today was a shining example of the National Health Service at its very best and I will be quoting it to my students next term as a standard to accomplish.

"It was lovely to meet you," said the young doctor as we were about to leave.  My mother reached forward and kissed her.

Soon we will get the results and I am pretty sure that it will not be good news.  But I know I'll be forever grateful to Mum's gentleman friend (who has been just wonderful) and to all the staff who helped to make this day so much better than it might have been.  In terrible times, they have made all the difference.

Saturday, December 01, 2012

The Day the World Changed

I don't know when your world changed, but mine changed - and not for the first time - on December 9th, 2008, which is when the Communist died.

It changed again last Tuesday.  My mother had a scan at the hospital on Monday to find out about the cough.  She had a cold and it turned to a cough and, in spite of two courses of antibiotics, the cough wouldn't shift.

The hospital said that we would get the results in seven to ten days - - unless they found something.

They found something.  We were summoned to the GP on Tuesday to get the bad news.

The cold had been a red herring.  The fluid on Mum's lungs was caused by cancer somewhere in her abdomen.  They don't know where yet, or how far it has spread: she has a "CT scan-aided biopsy" on Tuesday to find out.

This means that she has another scan which shows them where the tumour is, and they take a sample of it, under local anaesthetic, so that they can find out where it is and how aggressive it is and decide what to do next.

Of course, I help to train doctors in breaking bad news.  And I knew it must be bad news, of course, before we got there, because we had been summoned, and because I was becoming deeply suspicious of the cough.  I couldn't help observing and assessing how the GP broke the news.

He was trying very hard, but just not doing terribly well.  He had a strong foreign accent and a lisp as well so poor Mum couldn't hear a word that he was saying.  After a bit of him yelling "YOU HAVE A TUMOUR IN YOUR TUMMY!" I took to repeating everything he said in a way that Mum could understand.

"Tummy" is a word that should never, ever be used in a medical consultation and when I'm in charge of everything I'm going to ban it.  It is Meaningless Baby-Talk.  I knew that by "tummy" he didn't mean "stomach" - - he meant "somewhere in her abdomen".

So after he'd said "tummy" to me a few times I drew myself up to my full height and said, probably slightly pompously, "I do some work for the Yorkshire Cancer Network so I do have some idea of what you're talking about."

Mum's gentleman friend was there too and is being absolutely brilliant in looking after her and keeping her cheerful.  She's simply not able to eat really so has lost a stone in the past month - - and she was pretty tiny to start with.

My mother is eighty-eight.  She has had a long life and has been astonishingly fit and well for almost all of it.  So this is sad, but it shouldn't be seen as a tragedy.  I know that.

However, it feels pretty bloody tragic to me.  My world has changed.  Oh yes.