1 October 2010
Today I took my mother to the hospital in Taunton for a scan. This is a follow-up appointment for mum’s diagnosis of cancer. Taunton advertises itself as “Floral Capital of the South West.” Surely, this is an offence under the Trades Description Act? The centre looked neglected and run down with boarded up shops and pubs. Not a flower in sight!
Signage to the hospital was non existent. We got lost, so I stopped to ask a local lad the way.
“Excuse me. Can you tell me the way to Taunton Hospital?”
"You know where I work? It’s near there." He said.
"No, I don't know where you work." I replied.
He looked at me as if I were stupid. "Go down past
where I work and turn right” he growled, walking away. Welcome to the Floral
Capital of the South West!
The scanner was situated on the back of a lorry in the car
park at the rear of the hospital next to the bereavement support unit. Not the most appropriate place for those
being scanned for a potentially life-threatening illness. I parked in the
multi-storey car park and got mum a wheel chair. No paths. Dodged the traffic.
No disabled access. Rickety steep stairs up. Dad nearly fell over the edge and
broke his neck.
Two hours later mum appeared, complaining bitterly that they
had broken her shoulder by making her lie in the scanner with her hands behind
her head. She insisted, loudly and in front of all the staff, that I take her
to another hospital to get her shoulder x-rayed.
We soon hit the Taunton rush hour. Stuck in a big traffic
jam on a roundabout, mum suddenly started shouting, “Stop! Stop! There’s a
butcher’s shop selling rabbits - two for £2.” Some things never change, no
matter how ill she is. She did the same thing at her brother, Uncle Harry’s,
funeral. We were driving sedately along in a limo behind the hearse when she
suddenly espied eggs being sold cheaply at the farm shop. No we were not going
to stop! Still the upside was that the complaining about not stopping for the
rabbits took her mind of complaining about her “broken” shoulder.
4 October 2010
Took mum to the hospital in Exeter today for further scans
and consultation. I went in with mum and we saw two very nice doctors, one of
whom was the chief consultant. They told us that mum definitely had cancer,
although not cancer of the lung. The grape-size growth on her lung is a
non-cancerous "nodule" and is not responsible for any of her
symptoms. They have diagnosed her as having cancer of the "food pipe"
- which I take to mean the oesophagus. All the symptoms mum has are due to
the cancer of the food pipe. I hadn't realized that mum had had any problems here.
I was amazed that she told them she had difficulty eating / drinking / swallowing.
She certainly showed no signs of these symptoms when I took her out for lunch,
teas, coffees, cake, etc.
The blood
test showed an oxygen level of 96%: she doesn't need air/oxygen. They
were very patient and explained everything to us in detail. When they asked mum
to repeat back what they had said, she still thought the problem was with her
lungs/breathing. I also had to keep explaining to her where the cancer was. She
kept turning to me and saying, "I have cancer, but they don't know where
it is." I asked about treatment and they said that because of mum's frail
condition, tracheotomy, etc., it would be up to mum to decide whether she could
cope with any chemo/radio/surgery/treatment. Given mum's frailty, they want to
move things along as quickly as possible. They are afraid that if mum
deteriorates any further, they won’t be able to offer anything.
I then took her for a further blood test and an x-ray. The
haematology department corridor was lined with people sitting in chairs awaiting
their turn. The wheelchair mum was in, was hopeless; it was impossible to wheel
it in a straight line. It was like a supermarket trolley with a mind of its
own. Navigating my way through two lines of sick people, I inadvertently ran over a
man’s foot. To my surprise, he didn’t seem to notice. Not even a flinch. I apologised and asked if his foot was OK.
Where upon he rolled up his trouser leg, and revealed an artificial leg!
I think mum is aware that she has a terminal illness. She
has asked for her ashes to be kept and buried with dad's when the time comes. This
is a sure sign of how serious the situation is because normally she tells me
she wants her ashes scattered on her mother’s grave in Tintagel. Now she says
that she doesn’t want her ashes blown all over the place on a drafty Cornish
cliff, but kept in one place waiting for dad’s arrival. I felt like saying, “
Supposing dad remarries, what will his second wife think about that”, but
thought better of it.
The most difficult part was telling dad. She didn't want him
to go in with us, so it was left to me to tell him. He had a cry and kept
asking how they were going to make her better. I couldn't say that she was
going to get better. Unfortunately, dad
had forgotten to put his hearing aids in, so I ended up talking at the top of
my voice in a crowded waiting room, so that everyone could hear me breaking the
news that his wife was seriously ill with cancer.
In the evening spoke to my three sisters who are scattered
around the world. Do we make funeral
plans? We agreed that despite the huge expense, they would all fly in this year
to say they last farewells. (Or so we thought.)
8 October 2010
Mum’s budgie has gone! She has given it away to a charity
shop. She has only had it two months. She gave it the best of everything. She’d
even had me trudging round every pet shop in the area looking for a plastic
budgie to keep it company. It was an
ungrateful wretch. It refused to eat out
of mum’s hand and just pecked at her. When she told me that she couldn’t tame
it, I knew that its days were numbered. Just as well, she didn’t have permission to keep
a budgie. Pets aren’t allowed where they live.
9 October 2010
Exmouth’s Winter Carnival of light. We had a brilliant view from mum & dad’s
flat. All the floats magnificently light up with multi-coloured lights. However
the evening was spoilt by mum who kept complaining the whole evening: over and
over again like a broken record, “Fancy doing it in the dark, they should have
done it in the afternoon.” She just
couldn’t get it. A Carnival of light in the brilliant sunshine of a glorious
autumn afternoon, just would work. However, mum had worked hard to prepare a supper to eat whilst we watched the parade. She had made some apple turnovers but had
run out of the apple filling so she filled the rest with mash potatoes. My wife
had just joined Slimming World and wisely brought some ham sandwiches which she
managed to eat in a dark corner without being noticed.
10 October 2010
Bad heart burn after mum’s apple and potato turnovers last
night.
Dad has been up to his old tricks and has been watching too
much Bling TV / Bid TV. He has bought another gold watch. He has now bought
four. He has given me two, which I don’t wear. He now has two, which he doesn’t
wear. Both of us preferring ordinary leather strap watches with dials you can
actually read. He has now taken to bulk buying
boxes of luxury dark chocolate for mum. She is a diabetic and anyway doesn’t
like dark chocolate. I am forcing myself to eat a few every time I go to visit (the
sacrifices I make to preserve my mother’s health). Now that mum, a confirmed
shopaholic, is too unwell to get to the shops her retail therapy has found
another outlet: She is buying clothes from the shopping channel on TV. Because
of her illness, she is losing a lot of weight and the coats, jackets etc., are
already too large for her when they arrive and she has to get her sewing
machine out to alter them and make them smaller.
11 October 2010
I took mum to the hospital for her endoscopy and
bronchiostomy. In the waiting room mum
gave a running commentary on everyone who came in. Unfortunately, dad’s hearing
aids weren’t working and so, in a very loud voice, she was saying things like:
“Look at her. What a scruff. Fancy coming into hospital
dressed like that.”
“Why has he got such a big bag? We’re only supposed to be
staying overnight. I haven’t brought all that”
Do you think that black woman is that old man’s carer? She
can’t be his daughter – not that colour.
Left mum in the waiting room and took dad for something to
eat. When we got back, she’d gone. Dad cried because he wasn’t there when she
went in.
Took dad back home to their flat. The Care Manager took me
to one side to complain again about the emergency cord in mum & dad’s
bedroom. Every month she checks emergency cords and every month she tells mum
& Dad that they are blocking the speaker/cord in their bedroom with their headboard.
Care Line, the emergency service, have complained that they cannot hear mum or
dad when they pull the cord (which they do fairly often). It is left to me to
reduce the height of the headboard whilst mum is in hospital and hope that she
doesn’t notice when she gets home.
12 October 2010
Back to hospital to collect mum. This gets more and more
mysterious. We steamed open the letter the hospital gave mum to give to her own doctor. The result is "Nothing Remarkable"! So, where is this
cancer? They have taken some cells for further tests and will call
mum back after further consideration.
Mum is still confused and now believes she has cancer of the
blood that is linked to her haemorrhoids. She gave me the full description
of how she manages to go to the toilet. I'll never use an ice-cream sundae
spoon again. My poor sister is going to stay with mum next week. Let’s hope she
makes sure mum washes her hands and certainly doesn’t have any ice-cream. I
asked mum about medication for her haemorrhoids and told her that scientists
had proved that haemorrhoid cream was also effective in reducing wrinkles on
the face. She thought she would try it. She is so gullible. She couldn’t
understand why dad and I were laughing so much. Mum’s usual beauty treatment
for her face is to use the white of an egg. She swears by it, Personally, I
think it just leaves her face looking like a meringue.
At the fracture clinic they gave mum an x-ray to check on
the leg she broke ealier in the year. All is OK and they gave her an appointment
for 4 months time (ignoring her comments about not being here in 4 months).
Had email from my middle sister. Mum has phoned her with a blow by blow account of her haemorrhoids (but missing out the
bit about the ice-cream sundae spoon).
13 October 2010
Took mum and dad out for afternoon tea in Budleigh
Salterton. A very jolly man approached us as if we were long lost
relations. His Devon accent was so
strong that mum and dad couldn’t understand a word he said to them. They
bluffed their way through and just kept nodding and smiling and hoped he’d go
away. Mum and dad enjoyed their scrumptious cream teas: homemade scones with
huge dollops of cream and strawberry jam! Mum said that she was going to be
dead soon so she wasn’t going to worry any more about her diabetes.
14 October 2010
The battle of wills between mum and the Care Manager where
they live continues: for health and safety reasons the corridors must be kept
clear. Mum & Dad want to keep their wheelchair in the corridor. The Care
Manager keeps asking them to move it down to the storage area when it is not in
use. It is never in use! Dad hasn’t the
strength to push mum when she’s in the wheelchair and mum is too proud to be
seen in it. However, it is a matter of “principle” that she should be able to
keep the wheelchair wherever she wants. Mum quite often uses the phrase, “It’s
a matter of principle”. When I ask her what this “principle” is, she just
glares at me. They don’t believe that the Care Manager is right, so I emailed
owners of the apartment complex who confirmed that nothing may be kept in
corridors.
15 October 2010
18 October 2010
Dear….
I am writing to express my concern regarding the care and
treatment of my mother, Mrs Napper. Over the past few months there seems to
have been confusion and lack of communication regarding my mother’s condition.
Whilst my mother was in Exeter Hospital in April this year,
I received a telephone call from a doctor at the hospital informing me that my
mother was seriously ill and had lung cancer. You can image the distress that
this has caused my parents, my sisters and myself.
On the 1st October I took my mother to Taunton
for a PET-CT scan. And on the 4th October I accompanied my mother to see
Consultants at the Exeter Hospital. At that meeting, I was told that
mother did not have lung cancer and that the grape-size nodule was not
responsible for any of her symptoms. However, they said that what the
scan did reveal was cancer cells in the "food pipe" - which I take to
mean the oesophagus. We were told that the symptoms my mother is exhibiting
were due to this. (i.e. general feeling of being unwell, loss of weight,
etc.) Given my mother’s frailty, they wanted to move things along as
quickly as possible and arranged for her to have a bronchiostomy and a
gastrostomy. They also told me that it would be up to my mother to decide what
treatment she felt she could cope with for the cancer. Given the
seriousness of the situation, as expressed by the consultants, my sisters are
flying in from Scotland, New Zealand and the USA.
I gather that the result of the bronchiostomy was “nothing
remarkable” but that a “wash” has been taken of the oesophagus for further
analysis. At the moment, we are awaiting a further appointment with the consultant.
I wonder if you could reassure my mother that her diagnosis
of cancer is being taken seriously and is not a matter of depression or not
eating properly. I know a hospice nurse is now visiting my mother
regularly, but could you also ensure that there is greater liaison between
yourself and the hospital so that appropriate support and care can be put in
place for my mother.
Yours sincerely …
19 October 2010
My oldest sister is in my mother’s bad books even before she
arrives. She is due to fly in next week, but has told mum that two friends are coming to spend the weekend at the same Guest House. Mum is upset and
offended. She expects my sister to spend 24 hours a day with her. How dare these friends intrude!
20 October 2010
Telephoned the hospital to ask why we hadn't heard from them
re follow appointment for mum. Spoke to consultant’s secretary. There was a
note in mum's file to say that no further appointment was necessary.
Mum’s doctor telephoned me. He wants to know why my mother
insists of treating him like the enemy. I said, “Join the club!” He told me that there was no definite
diagnosis of what is wrong with mum. I
told him that I have diagnosed her with Borderline Personality Disorder. I
could hear him give a knowing smile at the other end. Anyway, as far as he is
concerned, all tests have shown that there is no sign of cancer! However, they
are still looking for a cause of mum's weight loss. He is expecting the results
of the "wash" they took in the next 10 days. He is on holiday next
week. If we don't hear anything, I am to phone him and he will contact the consultant.
Neither does he think, when I asked him, if she was suffering from bleach
poison: given the amount of bleach she
uses to soak the tea cups in. However, he did express a concern about mum &
dad's general frailty and was surprised that they weren't already in
residential care. Something to be thought about in the future, he said. But who's
going to tell them? The last time I suggested this she accused me of wanting to
put them into the “Work House”.
21 October 2010
Went to visit mum today to discover that she is having
problems with her diabetic sugar level blood sampler. The test sticks sent by
the pharmacy don’t fit her machine. She complained that the pharmacy don't know
what they are doing, so I went to the chemist to sort them out.
The Pharmacist said, "You father has already been in 3
times this week about this. Your mother has two machines. We've told your
father that the test sticks are for the other machine. Anyway, why is your
mother testing her blood sugar levels? The medication she is on is sufficient
and the instructions that accompany the pills clearly state that there is no
need for the patient to test their sugar levels. And, because of the time it
takes glucose to seep into the blood, the test is 24 - 48 hours out of
date." (The slight fall in mum’s
blood sugar level and she eats a Mars Bar, which she keeps in her handbag for
emergencies.)
I explained that my mother suffers from chronic hypochondria
and needs to constantly monitor her blood sugar levels and anyway she doesn't
keep to a diabetic diet and binges on chocolate, particularly the sort that she
is allergic to and that gives her an itchy nose.(I have already confiscated a
large box of Quality Street, chocolate Brazils and fudge this week. I am forcing myself to eat them in order to prevent her falling into a diabetic coma.)
Back home mum remembered that she does have another
monitoring kit. She also remembers that she has spare test strips for it
anyway. She is extremely offended that she doesn't have to keep testing her blood sugar
levels. The pharmacist doesn’t know what he is talking about. She has had
diabetes for 15 years - she ought to know what she is doing and anyway they
always check her blood sugar levels when she is in hospital, so it must be
necessary for her to do it when she's at home. "Yes mum, but if the
hospital stuck a thermometer up your bum, you wouldn't be doing that 3 times a
day when you get home, would you?" She is not convinced.
22 October 2010
Today mum felt so ill she went shopping in Ilminister, an
hour’s drive away, just to buy herself some trousers! She is fed up taking in
the trousers she bought on the TV shopping channel.
23 October 2010
Mum's heard from the hospital. The letter simply says that
she has another appointment on the 10th January 2011. She is suffering
from lower back pain, but has told no one about her on-going constipation
and haemorrhoids. (Apart from my other sister who emailed me to say mum had
phoned her and has given her a detailed and gory account of her haemorrhoids
(or swollen grapes as she calls them).
25 October 2010
Visited mum today.
She’s spoken to the doctor about, “feeling ill” with pains in her lower
back. He says she has an infection and has prescribed antibiotics. She is
refusing to take them. He doesn’t realise how seriously ill she is and he
doesn’t know what he is talking about. I asked if she told him about her
chronic constipation and haemorrhoids. She said “No.” I casually mentioned that deliberately withholding such information from your doctor is a sign of
dementia. Mother has no sense of humour.
Having arranged for my brother-in-law to replace the light
bulbs in their bathroom vanity unit when he comes down next weekend, I discover
they couldn’t wait the 4 days and have paid a man to come and take the bathroom
apart.
28 October 2010
My eldest sister and brother-in-law arrive today. I went to
Mum & Dads to collect their car to go to the airport.
Mum’s blood pressure is sky high at the thought of her
visitors coming. “Why is she coming?” she kept asking. “Couldn’t she have
waited until I’m dead? It’s a waste of an airfare.” However, mum has made a large batch of her
speciality apple turnovers for my brother-in-law. Poor man, what has he done to
deserve this? They give me heartburn. (Fortunately, there are no mashed
potatoes in them this time.)
Because of Dad’s, “little accidents” mum decided to have a
go at cleaning the car seats before my sister arrives. She didn’t want her
visitors sitting on anything untoward. (Although I’ve been sitting in dad’s
driving seat for the past two months). The car now stinks of disinfectant and
toilet air-freshener. It is impossible to drive to the airport without having
all the windows open.
At the airport I reminded my sister to have plenty of photos
of her grandson on hand to defuse any awkward situations. She doesn’t have any
with her. She thought mum had some.
29 October 2010
Mum & Dad have persuaded my sister to take them to
Cornwall. I keep getting text messages. The trip is not going well and my sister is
threatening to murder mother.
30 October
Phone call from my sister: she’s been thrown out by mother
and barred from attending her funeral. Sister is in tears. I thought she’d done
really well to last 2 days. Rumblings started yesterday. Big explosion today. We
meet up for coffee and a time of group therapy. Took bets on how long we think our other sisters will last when they come. Fortunately, my sister’s friends arrived for
the weekend, so not all a disaster.
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