The Story of M
Click the pictures
to get larger versions.
For those that know Marg, here's some details so far. Exact details
and staff names are not given. There are other personal details
and events and so on not mentioned or discussed here as its not
appropriate, but there is a lot more going on than is listed
here! It will be updated regularly. Phone if you want the latest!
Click images for larger versions. Life has changed forever. This
is authored by me, Nic (her husband) and edited and approved by Marg.
April 2008
Marg noticed a lump in her neck and went to her GP. She diagnosed
it as a swollen gland and sent Marg home. She told her she was
did not warrant a referral because she was paranoid as Marg works
in a hospital herself. Every couple of weeks she'd go in, on
a couple of occasions she was given a sick note, and also antibiotics.
Late May 2008
On holiday Marg noticed the lump getting bigger. Marg also having
sweats and feeling very lethargic (classic symptoms). Nonetheless
we had a good holiday, met dolphins, but the weather could have
been better! We saw the Pirates Show in Magaluf, bartered at
markets and an involved trip over precarious mountains.
June 2008
GP refused to refer Marg, still said she was being paranoid.
July 2008
Marg went to see occupational health after a period of sick leave
from work, and the letter issued stated that the neck lump requires
investigation by GP. It was the school summer holidays and Marg
was frequently outside in her Betty Boop pygamas chatting with
neighbours and overseeing the children playing.
August 5th 2008 Tuesday
Marg saw a different doctor at the practice, Dr. V, who immediately
referred (and recommended) her to a Mr. H. Making an appointment,
due to holidays it was Monday 18th August. Marg was a little
anxious trying to get the appointment earlier but in the end
that date stuck. Life went on as normal neighbours calling down
and watching the street go by as the kids played in the street.
Nic also met the GP who was not for referring
Marg around this time (story here).
August 18th 2008 Monday
Mr H. at a private hospital 4 pm. After taking some symptom notes
and having a good prod, he performed a needle biopsy, put a camera
up Marg's nose and down her throat, sent her for chest x-ray,
and told us to come back later that evening for an ultrasound
scan. He said he wanted us back the next Monday but as Nic pointed
out it was a bank holiday, he made it the Friday 22nd for results.
Seeing his secretary he got her an appointment pushed late into
his schedule. We attended for the ultrasound at 7 pm in the evening.
August 22nd 2008, Friday
Rather nerve racking, but hoping it wasn't bad news, eventually,
7.30 in the evening, we saw Mr H who was running late due to
covering someone else's surgery, while we sat and watched the
Olympics from China. He said he was worried about the lump, but
would not confirm or deny anything Non Hodgkin's lymphoma? He
wanted Marg in for a CT scan at the earliest time the mobile
equipment was onsite. He also wanted to perform an open biopsy
where they take a sample of the lump tissue for analysis. Bearing
in mind this was a Friday evening, it was bank holiday on the
Monday, he wanted her in on Tuesday 26th August. He arranged
the pre-med, we were given the usual fast after midnight, checked
for bed availability and told to turn up for 10 but told to phone
anyway to confirm details with the registrar. We were also booked
for neck to pelvis CT scan on the next available CT day, which
was Saturday 30th August and told to fast for 24 hours before
the appointment at 11 am.
August 26th 2008, Tuesday
We got a phone call at 9.30 am saying can you make our way to
the private hospital for basic pre-med. On arrival someone following
us into the car park commented on one of my car stickers. Little
did we know that was one of the theatre assistants!
We sat a while waiting, told there were a couple of cases before
us, plus an urgent one. Marg was anesthetised at 1 pm and returned
from theatre at 2.30 pm.
At 4.30 pm she was coming round and I went to see her, late in
the afternoon, Mr. H came to see us and told us that he had also
done additional investigation using a camera as far as he could
get it down lung airways and up in all the passages in her head
and it was "clear". Marg came home a bit groggy. We got appointment
for Monday 1st September to have the stitches removed and wound
checked. I changed the dressing a couple of times but no other
ills. The lump itself was very tender and swollen and painful.
Marg was started to have difficulty sleeping due to the size
of it and it now having been disturbed.
August 30th 2008, Saturday
Marg was starving. 10 am Hadn't had anything to eat, was only
allowed sips of water and we turned up to the radiology dept
and given a jug full of barium (and aniseed) to drink. Awful
stuff. Had to drink it over an hour. At 11.15 taken down for
her scan to the mobile unit, it would take around 30 minutes.
During this time she was also injected with various other chemicals
to allow blood flow and so on to show on the CT scan. Rather
odd sensations from the injection while in a very noisy machine.
We left there and headed into Bolton where she wanted a McDonalds
coffee. As we parked up she said she was going to be sick, I
quickly handed her the plastic bag from the car that our daughter's
cousin left in the car from an overnight stay earlier in the
week, which had a hole in the bottom. Plan B was leaning out
the car door! One coffee later and she was more settled.
September 1st 2008, Monday
A quick morning appointment to have the stitches removed and
the wound in her neck was healing well. Molly started back to
school the day after.
September 3rd 2008, Wednesday
An agonising wait late in the afternoon to see Mr. H for the
results. Squamous non small cell lung cancer (SNSCLC), right
lung, chest, and she'd had it for "a few months". The lump in
the neck was a secondary so rendered it inoperable but he made
appointment to see a Dr. W at Bolton on Friday 5th September.
We left rather upset, shocked, stunned. Sleepless nights and
the news filtered to friends, colleagues and loved ones. Many
gifts too, and thank you to each and all, it means so much.
In layman's terms, cancer is where the cells that reproduce to
replace the worn out cells in the body, make a mistake (in the
DNA), then start to reproduce uncontrollably. Those cells are
useless, they don't perform any useful function but take away
vital cell space from the good and normal cells, eventually invading
the good cells. There are over 200 types of cancer.
September 5th 2008, Friday
We met Dr. W in the Thoracic unit at Bolton. He talked to us
more about the findings. They had held a preliminary MDT (multi
discipline team) meeting over the results and were quite confident
that something could be done, and arranged an appointment for
Dr. S, a consultant from Christies for 14th September. We are
still in shock but did come away feeling more positive, the prognosis
being better than that given by Mr. H, who stated that his cancer
knowledge was not up to date.
September 10th 2008, Wednesday
Big Bang Day at Cern where the Large Hadron Collider is switched
on and particles are send around the world's largest particle
accelerator designed to see into the building blocks of atoms.
Technology like this helps research into chemotherapy drugs that
attack cancer, as well as radiotherapy, so if you think it's
irrelevant, think again. The radio therapy units are just the
same, only they fire in straight lines.
September 11th 2008, Thursday
Met Dr. S. and specialist nurse H at the Thoracic Department
at Bolton. (Oncology). They talked in some detail about what
they had found and how they were going to treat it. Very straight
talking, but again felt a lot better after talking to them. I
had to use my computer expertise to help get the CT scan images
up on his computer! They were copied from the private hospital
as we waited. He told us they were going to hold a detailed MDT
where Mr H, Dr S, Dr. W, nurse H, the CT scan analyst Dr S would
be present to discuss treatment but they were expecting it would
start with chemotherapy and possibly use radiotherapy. We were
told about chemo and the effects on the immune system, and general
side effects. Nurse H took some bloods, made an appointment to
see us to go through additional details of the treatment. We
would receive notification when to attend Christies for clinic
and start treatment in the post. They would be holding a detailed
MDT to discuss a treatment plan. Dr. S wanted to be certain exactly
what he was treating. He was suggesting that maybe another scan
or more tests should be performed.
September 12th 2008, Friday
A meeting my my line manager and HR who I found extremely supportive,
giving advice and details of how they would arrange for colleagues
to take on some of my workload. They have made it possible to
take on a role as carer, more or less full time, as well as work,
as most of my role can be performed remotely, with the occasional
necessary office or location visit. A note of appreciaton for
all the understanding, and personal wishes from all those I work
with, it means a lot.
September 13th 2008, Saturday
With knowledge of the lowering of resistance to immunity, I bought
gallons of disinfectant, new towels and sheets and a deep clean
started of the house. A digital temperature monitor was bought.
A few more visitors and I worked on the house.
September 16th, Tuesday
Specialist nurse H came to talk to us in some detail about chemotherapy,
radiotherapy and things in general. She was very reassuring but
basically said "prepare yourself" and we got some administrative
paperwork done. She explained that we would have a day of chemo,
another day of chemo on the 8th day, then a rest and clinic day
on the 15th day, giving he immune system time to recover, then
the cycle restarts (as day 1) on the 21st day. We had also had
a letter saying please come to Christies at 1 pm on 17th September
at the outpatients. This was all happening reassuringly fast.
Between 3rd September and now we had no end of visitors and phone
calls, thank you for making the effort to see us, for the gifts,
all as shocked as we. All very touching.
September 17th 2008, Wednesday, 1 pm
After some initial map research only satnav will do and we arrived
in Oak Road. We felt very strange, parking up in a very crowded
car park and walking in through the main entrance of Christies,
a frightening yet welcoming place. Young and old, many with scarves
on their heads, but so many people. A large place, we found our
way to outpatients and queued up. Told to sit on the blue chairs,
we waited about an hour. LCD TV displays telling us pharmacy
waiting times were 90 minutes, various clinics, most running
over an hour behind. We were called into a consultant area and
waited another 45 minutes. Height and weight were taken (for
BMI dosing) and eventually Dr. S came to see us.
He checked we understood about the chemotherapy, told us in some
detail what they were using. He initially did hint that they
may try a new drug in an earlier consultation, however he said
with the lump in her neck they weren't so keen to use it and
instead was going to apply a very strong regime, two drugs in
combination on a 3 week cycle over 4 cycles, starting today.
The bloods taken in Bolton would be used, we had to go for baseline
chest x-ray, and take our security sealed papers up to Ward 3.
We had been given a prescription which we dropped at pharmacy
which would be ready in 90 minutes or so. Marg signed the consent
forms and we started the next stage of the journey. We also spoke
about Astragalus that a friend had told us about, but he preferred
we avoid it as he did not know how it may affect the toxicology of the chemo.
At 3.30 we reported to Ward 3, people sat in chairs with drips
in their arms and a small army of nurses checking and changing
bags. It was almost surreal. We got a sense that they would never
turn anyone away, just make a bit more room.
At 4.25 we were called into a side room where an intravenous
device was fitted (canula). Name and date of birth confirmed,
and reconfirmed at each bag change, then she was injected through
the device with anti sickness and a steroid then a small drip
flush and finally the first bag of drugs. Gemcitabine. This was
to take around 30 minutes, then changed to a saline for 1 and
a half hours, then another large bag over an hour, Cisplatin,
then another large saline over an hour. When you went to the
lavatory you wheeled your stand and drugs with you! Unfortunately
we got a couple of flashbacks (loo trips at the wrong time) so
additional flush had to be used. The nurses commented how busy
it was and we may have to be moved to another ward as this one closes at 7 pm!
While on ward 3 we got taking to a few people. Marg talked to
T, I talked to another chap in his 80's. No matter who you talked
to they were so friendly, positive, warm. We found out that we'd
also started our cycle when the hospital had decided to change
the rota system to fit more patients in. I called down to pharmacy
for the prescription, and the on ward nurses prescribed some
additional drugs, and a dropped off that prescription and collected
it after the 90 minutes.
It's hard to describe how you feel when seeing the bags of drugs,
some covered due to light sensitivity. These miracles of research
preserving and extending life, you feel in awe and gratitude
at the miracle modern science brings. At 8 pm we were taken up
to ward 5. Others had electronically driven chemo systems which
binged and bleeped. A sound we were to be come very familiar with.
Chemotherapy is effectively a poison, a cocktail of drugs which
target cancer cells. Unavoidably they also kill off normal natural
cells in the (immune system in particular) but the normal and
natural cells can recover, the cancer cells do something called
a "programmed cell death".
After 5 and a
half hours, just after 9 pm, we left ward 5 for home. Manchester
Utd was playing at home and we got caught in the traffic on the
motorway back. Our daughter Molly was staying with a school friend
so picked her up on the way back.
Yet another restless night but apart from feeling drained otherwise OK.
September 18th 2008, Thursday
Pill patrol, anti sick, steroid, and in case of sick, and heartburn,
so far so good, some sickness, heartburn but we got into the
rhythm of taking the drugs. A few days of unwellness followed,
Friday to Sunday Marg spent the time mostly in bed unaware of
time. I called at the dentists who advised some stuff for sore
mouth, and very good and useful it was too.
September 19th 2008, Friday
A visit myself to Dr. B. My sciatica is getting no better so
he referred me to a neurosurgeon, and gave me another set of
doses of pain killers. "You've a lot on", he said, as I told
him the story so far on Marg.
September 22nd 2008, Monday
Marg comes to life, wondering where the past few days went. Christie
Hospital is renamed "The Christie". (see pictures of signs in transition)
September 23rd 2008, Tuesday
Had to cancel appointment at Christies not feeling well enough
to attend. Very understanding. Starting to feel some tingling
and sounds in particular are beginning to grate, ringing sounds.
Known side effects.
September 24th 2008, Wednesday
A 9 am appointment, we go for routine bloods, collected our notes,
drugs were pre-ordered, we already had the 2nd dose of anti sickness
ready on Ward 3 so we waited until we were called into the side
room for the canula and the same round of drugs, anti sickness,
steroids, and then the small bag of chemo, the large saline,
the large bag of chemo and another large saline. This came as
a bit of a surprise, in my research I hadn't seen this regime
(G+C x 2) but he did say it was powerful. We were expecting just
the Gemcitabine. Kidney function is checked and we were careful
not to allow flashback, and we were only connected for 4 and
a half hours. We met T again and compared notes. T had very similar
and was on a similar regime.
September 25th 2008, Thursday
Not feeling too bad, taking anti sick, heartburn, etc. religiously
so feeling OK. Went to Christies for the rearranged appointment from Tuesday.
September 26th 2008, Friday
Side effects start to kick in and the weekend is lost. By now
Marg's immune system is running low and the risk of infection
and complications is high. It's hard turning people away, asking
them not to visit, but everyone was understanding.
September 29th 2008, Monday
Starting to feel a lot better. I am learning to be a carer and
discovering that some make it easy for you, others go out of
their way to make it even more difficult to deal with. Work and
HR and colleagues all being very understanding and helpful, and
positively supportive, being definitely in the army of helpers.
They know who they are. Normal life also throws up unexpected
complications, things needing servicing and repairing or breaking
down, and when you have no time to deal with things, somehow
you have to find even more time to deal with the unexpected problems.
October 1st 2008, Wednesday 04:00 am
Marg awoke with a start and shivering. Taking her temp it was
over 38, we called the Christie emergency line. They took a few
details then called back, please bring Marg in to admissions.
We had to get our daughter up but we arrived at Christies to
an empty car park at 5.30 am. Her temp was taken it was still
over 38, bloods were taken for analysis and I left her to take
Molly to school driving through thunder and extremely heavy rain
that made driving difficult. Returning through heavy traffic,
we were told she had an infection and had started giving intravenous
antibiotics. Marg's temperature came down and remained stable
and by 5.30 Marg was allowed home with strong antibiotic tablets.
Dr S our consultant came to see us on the ward, also sent us
for x-ray as this was supposed to be clinic day. Marg was immunosupressed.
Outside of the standard treatment this was our first experience
of the care and dedication of the Christies staff. While the
team giving chemotherapy are very good in themselves this side
of the care was also exceptionally good. On admission Marg was
seen by 2 doctors, the registrar and being looked after by a
dedicated staff nurse. Even our own consultant came to see us.
October 2nd-6th
Marg felt better than she has in a while, the lump seems to be
reducing but apart from getting tired quite quickly and easily
still reasonably mobile. October 3rd was Molly's school harvest
festival and Marg and I attended, friends from school glad to
see her. Extremely tired after that! No significant weight loss,
Marg started to crave certain foods. I phoned the neurosurgeon
to cancel my original appointment, to be rearranged later, I
had other priorities, my pain would have to wait. Sitting in
traffic queues in a car wasn't helping though...
October 7th 2008, Tuesday
In the morning Marg put together an overnight bag, just in case.
At 4.00 pm Marg's temperature rose above 37.5. The fair was in
town and I promised to take Molly to it. While on a ride my cell
phone rang and Marg's temperature was now over 38. We returned
home, phoned the Christies hotline and went in to admissions.
Blood was taken I left at 10.00 pm. Temperature rose above 40
and as Marg shivered a fan was brought to cool her down.
October 8th 2008, Wednesday
This would have been a chemo day, first session of the second
cycle. However Marg was still immunosuppressed, where 20 is normal
her count was 0.2. Chemotherapy-induced neutropenia. Antibiotic
followed and blood taken for cultures. Marg was on 2 hourly observations,
temperature, blood pressure, heart rate, oxygen level. With her
being expected to stay in for 3-4 days she was planned to move
to ward 12. Once again our consultant Dr. S came to see us and
he reviewed everything with us. We would not have had chemo today
with such low immune it would have been delayed. Her temperature
went over 40 degrees C.
October 9th - 22nd.
Marg was in Christies, her temperature kept spiking (going over
38) several times a day, and exceeded 40 a few times for the
first 4-5 days. Various medication given, one she was allergic
to (meropenam). Given something to boost up the immune system
which start to return to normal. However sodium was low. She
was fluid balance monitored. Blood pressure was periodically
low. The first 5-6 days Marg was very ill has little recollection
of that time. They brought a couple of fans to cool her down
but they were also blowing her hair out, thinning quite a lot
now. From day 7 to being let out feeling much better but blood
cultures were growing nothing so the temperature spikes were
a mystery. Tested for everything they could think of, including
meningitus. Marg went for intensive CT scan at the Pat Seed centre
on 15th October. Good news was nothing anywhere else, and found
a pocket of air where gall bladder was removed a year ago. Marg
had an allergic rash all over (meropenam) and joints swelling,
difficult to walk. By the 20th October feeling a lot better but
still spiking. They ran extra additional tests to be sent off
to other hospitals and booked heart tests at Bolton but they
did not have any bed space. This was subsequently booked as an
outpatient appointment. Steph and Nic visited alternately, and
together, visiting is a risk factor where infections are involved,
up to the point she says that's it get on the road, so she could
watch her evening TV.
All of the staff on the ward were exceptional, the level of care
was outstanding. They had a system, they were quite strict, for
example when giving out medicines, they wore different coloured
aprons and interaction was not permitted. Visitor numbers and
ages were limited and hand hygiene was paramount throughout the
hospital. Marg had some company people with the same, some illness
brought on by chemo. Then there was the night (in the first week)
when there was the grey rat lying on a bed next to a bald headed
alien. When Marg was more of this planet she realised it was
the lady's wig! We cried laughing, we made so many trips and
with her eldest daughter too. Several times even at 7 pm or 7.30
Dr S would call to see how Marg was and what changes there were.
One such Friday evening the nurse in charge of Marg said all
clinics had finished and consultants had long gone home, but
Dr. S arrived much to the nurse's amazement.
Marg made some friends on the ward, and had a stream of students
brought by the consultants all playing "find the lump". It was
also very sad, one of the friends she made was spending his last
days there, and he was mid 30's.
Molly's school had to continue as normal so I spoke to the school
family liaision so they knew what was going on, but the domestic
side of running a home was added to my role with only me to rely
on. Routine helped. Walking the dogs, washing, answering corespondance,
household chores, and working of course! I find I am waking early,
in some ways a lot on my mind, in others from pain as the painkiller's
effect wears off.
On October 10th, Ian Botham started his 12th leukaemia walk.
I saw an interview on GMTV and it moved me like never before.
Now I understood cancer, it affected me more knowing that children
had to endure this, as indiscriminate as cancer is. I started
to feel a huge amount of respect, and totally understand why
so much fund raising is performed, Pat Seed, all the others,
and I vowed to join them in my own way.
On October 14th (Tuesday) Molly started to complain of a sore
throat. While normally its nothing much to worry about, with
Marg it was not worth taking risks and the doctor we saw agreed
we did the right thing. Molly's temperature went above 37.5 a
quick prescription and she was getting back to normal. 21st October
dentist for routine check up. Dr. S also gave her the all clear
to go home, but as it was after 7 pm, the pharmacy was closed
so it would have to be tomorrow! Dr. S remarked that Marg was
just one step ahead.
October 22nd 2008, Wednesday
The escape committee met and after a pharmacy visit and traipse
back to the ward for the drugs we should have collected before
we left, we set off for home. Temperature monitoring was back
to me now, checking and giving paracetamol as required.
October 23rd 2008, Thursday
The district nurses called to pick up the ongoing case. Had a
long chat about how we got here. Molly and Nic went for flu jabs,
we qualified and were recommended as carers. Daily pill patrol
jumped! Some of the regular dosages were changed, paracetamol
for bringing temperature down, anti sick, anti heartburn, anti
fungal, sodium, plus the regular stuff.
October 27th 2008, Monday
Echo cardiogram at Bolton in the Lung and Cardiac unit, checking
for heart valve disease. Marg was still getting temperatures
but nothing in the "danger" range of over 38.5.
October 30th 2008, Thursday
Dr S. clinic at Bolton, with Nurse H. We had the infection results,
it was a fungal infection in the lung, Aspergillus and something
much stronger was prescribed to deal with it, voriconazole, the
side effects alone seem almost as bad as what it is treating.
We had a discussion and it was felt that Marg should be allowed
to recover from the immunosupression and meanwhile do some radiotherapy
in a couple of weeks. They explained that apart from tiredness,
this would be a relatively brief appointment but on 8 consecutive
days, after being marked up for where they are going to aim the
beams. Additional tests taken, some sent away to Leeds, others
to separate departments at Bolton. Back to feeling like a pincushion!
October 31st 2008, Friday
Marg used this as an excuse to go trick or treating, she walked
a reasonable way before losing breath but came back with a good
haul of sweets. We had our own fair share of visitors to the decorated house.
November 2nd 2008, Sunday
Not a good day cannot keep a thing down, eventually called out
the district nurses on-call for injection of anti sick. Needed
to be able to take the dose of anti fungal. Side effects of nausea,
vision disturbance and the rest all making an impact.
November 3rd 2008, Monday
District nurse calls to check, all OK. Temperature is still spiking,
GP (Dr. B) phones to confirm repeat drugs and effectiveness.
November 5th 2008, Wednesday
Dr. B (GP) called to see Marg due to having a sore throat and
advised that medication could interfere with the anti fungal
so best left alone. He looked at what we had been prescribed
and told us a little about it. We were all surprised, both at
the cost and the implications of it.
November 7th 2008, Friday
Electro cardiogram at Bolton Lung and Cardiac. We were told the
results were normal. Almost finished the anti fungals, just one
more day. Temperature stabilised, highest it got to was 37.2,
previous day did not go over 37 at all. Molly's school was closed
due to extensive sickness so she spent the day with her best friend Morgan.
November 11th 2008, Tuesday
Radiotherapy, first day long appointment, remaining 7 days shorter
appointments. We met Dr S. He had some good news it was clear
from the CT scan and the x-rays that the tumors had been reduced
by the chemotherapy although it was only a single session. Marg
saw what looked like a carpet tacker, "this will hurt but you'll
get over it" they said (and it did), then set up on a simulator,
marked up with a tattoo pen and we have to attend now on the
next 7 days. It wasn't possible to include the tumor in her neck
so that may be done at a later date. After that we had an appointment
with Dr. B (GP). We got some liquid paracetamol as we were told
about the pain and side effects, E45 was advised but we are thinking
more aftersun! A lot of people being marked up or awaiting treatment
to all parts of the body, head was quite obvious, and what looked
like severe sunburn. We were given a code to the radiotherapy
car park and instructions. While Marg was being marked up the
mains power failed in that section, equipment and energency lighting
was on, but we left the place in some level of darkness.
November 12th 2008, Wednesday
Parked up and reported to suite
5. We thought the appointments were quick, well relatively speaking
they are. We sat in a waiting area, all of the areas having red
warning lights, some having a complex arrangement of automatic
sliding doors. Lying on a bed to a different looking machine
(from the simulator), they told her not to move as they lined
her up, viewing the results on a screen. She was told don't panic
or try to get off because the floor would 'drop away' as they
radiate from the front and back in two bursts. In fact the bed
rose quite a few feet into the air. Marg describes the sound
like the automatic bin lorries, two bursts each 25 seconds. Within
2 hours she's feeling very tired and lethargic, and starting
to feel burnt, so out came the after sun! We also briefly met
up with T who was on the second session of the third cycle, up
on ward 3. She was telling us she was being injected with immune
booster (her husband J had been taught by the district nurses
how to give them) for several days after the chemo. Her schedule
had been knocked back 3 weeks due to the low immunity episode she had.
November 13th 2008, Thursday
Our second radiotherapy session, and a little over a week to
the end. Today we arranged with Molly's school that she come
along with us to take the mystery out of Marg's treatment. This
was the first time Molly had seen the hospital from an outpatient
point of view. We took her on a little tour, the admissions ward
she saw so early one October morning, the various waiting areas
and clinic areas, for a bit of lunch in the Wilmslow dining room,
then for our appointment. When we were called we explained that
Molly was here to see what has happening to her mum.
He allowed us to go into the machine room of suite 5. He told
Molly what the parts were, where her mum would be, then handed
the controls to Molly and let her move the machine around, how
it would move to line up before delivering the dose. We thanked
him and left as Marg got ready for dose number 2.
They put three discs on Marg's chest over the targets already
marked. They switch off the lights and lasers guide the machine
to the right angle and location. "Don't move!" They exit the
room then check. Next they come back in and remove the discs,
and leave to operate the equipment. The bed rises the machine
blowing air comes very close and a 25 second burst from the linear
accelerator high pitch buzzing very loud, then it moves under
the bed, and delivers another 25 second burst of targetted energy.
All done. Until tomorrow...
November 14th 2008, Friday
We arrived
to a notice that said there were delays on the machines, as two
were currently out of service. It is Children In Need day (run
by the BBC) and the radiotherapy staff are dressed as pirates
and princesses. I thought it was remarkable, that these people
looking after cancer patients, were raising fund for a completely
different cause. The same procedure, lining up the three beams
on the discs, removing the discs then firing the beams. There
are three beams, they converge on the tumor, each single beam
not strong enough to cause significant damage, but where they
cross (and meet) burning into the tumor,damaging the DNA of the
cancer cells. Marg mentioned she had been feeling a little light
headed, also short of breath, but this was largely normal, and
drink plenty of fluids. The tiredness came on after 3 or 4 hours,
and more pain than of late. We also called into the surgery for
Marg to have her flu jab.
November 17th 2008, Monday
Saturday was not a good day, Sunday was a lot better, hardly
any pain. Monday had a surprise. We arrived as normal and had
to wait as the machines were running late, we waited nearly an
hour past our appointment time. We have prints of the photos
we took to the two radiographers (above picture) who then got
onto the business of treating Marg. It was the usual two bursts
of 25 seconds. When we picked up our appointment card is was
an early afternoon appointment when we though we were also to
see our consultant. The receptionist made a quick referral and
changed our time to a morning appointment on machine 5, to match
our later appointment with Dr. S who was reviewing progress so
far. We guess we have to go for a chest x ray too, unlress they
gather that data on the machines as a matter of course. This
time she could feel burning inside and fell asleep when we got home.
November 18th 2008, Tuesday
Not a good day today, may elaborate later. We had a discussion
with Dr. S who said that he would be cautious using more chemotherapy
due to how ill Marg got so basically there was nothing left if
the second round of chemo didn't work.
We arrived for the morning appointment, following the diversions
to the special reserved car park for radiotherapy patients, the
machine was running late, but the staff friendly as always. I
had been up very early in a lot of pain from sciatica so dealt
with a couple of work issues, one of which followed me here on
the cell phone. After treatment we waited, and waited for Dr.
S. He was running very late, he was the only consultant in, working
on "sims" (simulations where radiotherapy targets are marked)
and clinics. When he eventually saw us we had a brief but frank
talk about future directions. Beginning 2nd December we would
use radiotherapy on the lump in the neck, and look to restart
chemotherapy in the first week of January. We have found the
past week extremely tiring, and virtually impossible to manage
much normal life, things on the list of things to do remain uncompleted.
Tomorrow looks like another busy day that not much else will
be achieved, apart from our attendance for treatment. Later tuesday
we called at the doctors for a scheduled test, and to pick up
repeat prescription.
November 19th 2008, Wednesday
Our waiting time
wasn't too bad today. Last night "Holby City" on TV featured
someone having radiotherapy, this is a screen capture which shows
laser being used to line up the target for radiotherapy. Feeling
a fair amount of burning today, and very tired. Nic arranged
an appointment with a neurosurgeon for sciatica, and I expect
I'll be scanned. If I need to be operated on, it'll have to fit
in with everything else, somehow. A notice pinned to the wall
said that Radiotherapy department had raised 676 pounds for Children
In Need. Another notice informed of the expected delay.
November 20th 2008, Thursday
It is hard to imagine where this week has gone, so much time
spent getting Molly to and from school, then travelling and attending
for radiotherapy, those two 25 second bursts take a lot out of
the day. I was reminded of Reginald Perrin today when another
reason for the delay was given, they found a screw on the floor
and the machine had to be checked by engineers to make sure it
wasn't important. We picked up a corrected repeat prescription,
and I have started to feel the effects of the radiation too in
being very, very tired.
November 21st 2008, Friday
Our last day of this session. Our neice Zoe came along today
she will be starting college and select her options and expressed
an interest in what they do. (Zoe and Nic talked about particle
physics before!) The familiar sign that the machine was 30 minutes
late was up, however we weren't waiting quite that long. The
radiographers then took us inside the suite. hey showed us the
moulds they use when treating very small areas to keep the body
absolutely still. Children and babes actually have to be sedated.
He pointed out the design on the accelerator itself how it could
he used to treat large or small areas as required. Thid machine
is a 6 kV energy machine, they use 2 kV, 6, 8 and 18 kV for very
deep penetrative tumours. He also told Zoe that there is currently
a high demand, even globally for radiographers. They gave her
a number to call to spend a day in the department. With that,
the treatment bruning away, we set off back for home and I was
very nearly late picking Molly up from school.
November 22nd 2008, Saturday
Marg in a lot of pain today, using a lot of painkillers. Nic
and Marg both up very early, my sciatica woke me up. The pain
killers for me are only working for 4-5 hours, then the pain
wakes me. I can't wait for my appointment now to see what is
wrong with my back. One of my neighbours suggested accupunture,
depending on my consultation I may take them up on the suggestion
because if an op is required it will be a long while before I
can have it, if all goes well, Marg's chemo session in the new
year will end in March. Marg having some difficulty swallowing,
some breathlessness but these are all known symptoms. I've remade
the "drug" sheet due to all the changes. I'm thinking I should
have a sheet for myself keep track of my dosage. We watched a
DVD from the Christie about radiotherapy, I'll extract a couple
of screeenshots that show things I cannot photograph myself. (Still pending).
November 23rd 2008, Sunday
In a lot of pain today. Divas II was on ITV, and opening the
show was Leona Lewis who sang a version of Run (Snow Patrol).
Brought tears to my eyes, when you hear a song in a different
context, the show was in support of Cancer.
November 24th-27th 2008
The pain has got considerably worse, in her chest and also a
lot of difficulty swallowing. The pain is far more intense than
we thought it would be, a stabbing twisting pain, so using a
lot of pain killers. The liquid paracetamol we got (sugar free
orangey) isn't much good, it is inducing nausea so after speaking
to Nurse H, we called radiotherapist L who is arranging a prescription
of the "special stuff" that Christies use, to hopefully numb
the throat pain at least. Have to go and collect that tomorrow.
November 28th-30th 2008
We picked up the "special stuff" and it started to work, Marg
could eat within 20 minutes and for a short while, then after
that the pain returned. Overall Friday, Saturday and Sunday were
very bad with the pain, swallowing and in the chest. On the Sunday
I called in at a Chinese herbal place to ask about acupuncture.
He also gave me an ointment to run on, rather pungent but it
was like a heat treatment but effective. Other than waking at
5 I did have a better night. Next Saturday for the needles...
December 1st 2008, Monday
The pain in Marg's chest is subsiding a little, still a lot of
difficulty swallowing, the special stuff is working, and sometimes
effervescent co-codamol is used. It was Nic's turn today and
we went to the Alexandra, 2 junctions beyond the turn off for
the Christie, to see Mr. L. After a chat, examination which involved
a sort of dance, I was sent to make an appointment at their onsite
MRI scanner, with a diagnosed "issue" between my 4th and 5th
vertebrae. That was made for this Wednesday, 3rd at 8.15! I figured
that we could have my MRI scan then attend for the radiotherapy,
with a short break. This means leaving home around 7 AM, and
we'll ask Molly's school if she can come with us (authorized
leave). There and then they also made a follow up appointment
for Mr. L on the Monday 8th December. It will be a very busy
few days and hopefully if we can have the first radiotherapy
session tomorrow, then Monday with be otherwise clear. Yet again
we had to bring the dog back from the vet's still having false
pregnancy and can't be spayed. Yet. Rebooked for the 10th. We
started to put the Christmas tree up, we are about the 4th in
our street. District nurses had called while we were out.
December 2nd 2008, Tuesday
Let it snow? The previous nights temperature dropped to -6 C,
this morning a generous dusting of snow greeted us. Molly went
to Morgans to go to school, we started out at 8.20 and arrived
at 10.25. The East Lancashire Road (A580) full of pack ice, the
motorway was moving. Met Dr. S and discussed things so far, in
particular the indigestion and hearburn which was being caused
my the cocktail of painkillers we were using. So the ibuprofen
(and the alternative diclofenac) is off the pill menu, and he's
prescribing some other stuff, including more of the Christie's
special stuff. He also offered to start the chemotherapy but
we declined to leave it until the new year.
.
Marg went for another simulation with radiographer A and Dr.
S, using fusewire to mark out the areas to be radiated. They
made a reference to the existing tattoo and added another. We
asked if it was possible to give us a session today, and said
there would be a bit of a wait, but we would have 5 sessions,
not 4, so we have to come here on Monday 8th anyway (and my 9.45
at Cheadle on that day). We took lunch in the Wilmslow restaurant
(Apple crumble!) then Marg went in, Suite 2 this time, was set
up, for a 40 second blast. Pharmacy was on 1 hour 20 minutes
wait so we decided to leave it until the morrow.
December 3rd 2008, Wednesday
Horrendous! Molly
came with us because there was no practical way she could get
to school today. Leaving early in the morning we still got caught
up in a tailback that made the 25 mile journey take 1 hour 30
minutes. We had breakfast at the Alex, then snaked our slow
way into The Christie. We had been to the Alex for my MRI scan,
detailed here.
Pharmacy was the first port of call, 1 hour 20 minutes was written
on the board but we had a 10 minute wait before we were seen
to. As we had some controlled drugs and some new drugs we had
to be seen and sign for. We arrived at Suite 2 for our appointment
and waited a short while, there seemed to be a lot of maintenance
going on so the adjacent machine was taking some of the load.
Another 41 seconds then it was all finished for that day, after
lunch and post the traffic rush. Nonetheless part of the M62
was closed due to a serious accident and we were delayed getting back.
December 4th 2008, Thursday
"I've got sunburn in the middle of December and I've not been
over the door!" said Marg. I'm applying the aloe vera to the
redness caused by the x rays. We had a long wait today, machine
was running behind, but we had some interesting conversations,
and one with a lady telling us about these jars of honey which
helped boost immunity, at 37 pounds a jar, small jars. But she
did say her immunity was better with it. Walking down the fishes
corridor we passed a toddler being wheeled on a bed who could
have been no more than 2 years, no hair, obviously having had
radiotherapy. It put into context a little that we should be
grateful for the life we have so far. I also had a chat with
the radiologist who was telling me that the energy of the machine
on Suite 2 was 6kv and they used photon energy. But they were busy so we left.
Switching on my cellphone, I had 2 messages, one from a friend
and former colleague, the second a call from the Alexandra, they
had the MRI results could I call them by return. So I called,
and they asked me to go immediately to see Mr. L. We snaked our
way down to Cheadle, and the detail is in Nic's
story.
December 5th 2008, Friday
The day did not start well with
the prospect of both of us hospitalized. A few phone calls in
the morning, and I was told that I am booked into pre op today.
We went for Marg's radiotherapy, it was starting to hurt more
now. We met the honey lady again but we weren't too late today.
Monday's final session is on suite 12, due to a service on suite
2. T and J said they would be in for their final session of chemo
so we went to see them and had a chat about how they were getting
on, comparing notes. J and I had a discussion about the congestion
charging and how we both vehermently disagreed with it, and thought
some of the proposals were utterly ridiculous. We were stood
near a couple who were obviously on their first session and I
think they were slightly stunned that in the light of what they
were there for, we were just being normal, but that is what it
is about. We left the Christie and made our way down to the Alexandra
where I had to call in for some paperwork and some detail about
what was being done to me (basically a hole in the spine and
the bad disc dragged out bit by bit) It didn't mention what they
were going to replace it with, if anything, and this was a point
of clarification for the parties involved, and I'll find out
Monday. I had my pre op, ecg, water, bloods, MRSA screening,
medical history questionnaire, discussion of pain control, height
and weight, blood pressure and oxygen level, then sent on our
way at 5.45 to sit in rush hour traffic back home. Monday will
be the last entry here for a few days...
December 6th 2008, Saturday
I
got all my paperwork for my admittance for next week. Everything
has now been finalised, no lifing needed now, and the finishing
touches were the lights to the outside of the house, a red white
and blue theme this year, as a change to blue which everyone
else seems to have. Marg's eating is getting a lot better the
coating medicine is working well, still in a lot of pain and
the lump has swollen so much that it's making her wake up. Since
I started taking the consultant's advice about bending and so
on, I'm starting to have better nights. I cancelled my acupunture
session, I felt that pain was my warning sign that I was overdoing
it, so I will live with it for now. The rest of this weekend
will be spent preparing for my hospitalization, I'm thinking
of renaming this page to reflect that! The lump is swelling up a lot.
December 8th 2008, Monday
You'd be forgiven for thinking "someone out there" is having
a laugh. For those inclined, I have "Cauda equina compression"
caused by a disc prolapse, occupying over 70% of the available
space in the spinal canal (from the MR scan). I'm experiencing
some of the symptoms, but not all, nonetheless
I am in tomorrow. It would not get better the disc material
would just calcify and make the symptoms worse or paralyse. We
are on Suite 12 today but we called to see radiographer L and
Co on Suite 5. There was the customary blue "Sorry we are running
late" sign, which while it is a very clearly etched sign, perhaps
they should just nail it to the wall, surely it's a health and
safety hazard to keep moving it about on the top of the suite
reception. Time for a note in the suggestion box. We were sat
next to a woman with a veritable stationary cupboard concealed
in her handbag, after finishing a letter and stamping it, she
wrapped it with a large roll of sticky tape. Yes The Christie
does have a post box. Suite 12 was more welcoming, the chairs
more comfy. Marg's final session was 55 seconds, and in the words
of the radiographer, they aren't half hammering it. More swelling
to follow. Marg has little use in her right arm and is very lethargic.
We will have a follow up letter in the post.
We called
at the doctors to pick
up the repeat prescription with hopefully enough painkillers
to get Marg through my time in hospital. I gave the repeat prescription
in first thing in the morning and I was asked if we'd got through
all the co-codamol, and I said, you gave us the wrong one, we
need the effervescent! A check on their system revealed their
error and they handed the prescription over, but we've pretty
much drunk the pharmacy dry of the MS solution, they owe us a
bottle! It may be my turn during the next few days on the strong painkillers...
December 9th 2008, Tuesday
The lump (as shown above) is sunburnt and VERY sore. I went into
the Alex... Molly was picked up from home by one of the teachers,
they have been so kind and helpful and understanding, with neither
Marg or myself able to get her to school, I think it became a
little adventure for her.
December 13th 2008, Saturday
Nic is home, I can't update much here for a while this has been a big
effort but to say that I am getting and feeling better but to update later
January with details when I can manage this with more confort.
Marg still getting side effects
from the radiation still sore, and using a LOT of painkillers,
we hope the pharmacy has restocked with a few gallons. By our
reckoning we'll be through this painful phase by Thursday-Friday
next week. For myself I had a CSF leak but I am OK slightly whooshy,
restrictions on movement, sitting (20 mins per hour), learning
to keep things close to my centre of gravity. I am still in my
caring role, apparently, I have instructions plus I am learning
how to do things without stressing or undoing the work that has
been done on me, I can manage short / brief sessions on this.
Molly is on the fast track to vacuuming! Neither of us can drive.
December 14 - 31 2008
We had a lot of help from friends neighbours and family, and
Christmas went well. Molly still being taken to school and dropped
off, Marg can't drive. Marg still in varying amounts of pain
and much more than we expected. having spoken to Nurse H, she
said it was relatively normal as radiotherapy is not assessed
until at least 6 weeks after the last treatment. We received
a letter for attendance to the Bolton clinic for 15th January.
Meanwhile the painkiller doses reducing slightly. The new year
brought relief that such a bad one was finally over.
We spent another Christmas dinner at Steph's, too much food but
it was good, with them in their new home, just a year ago they
were in but living out of boxes.
Ironically Christmas 2007 we went to lapland, a dream place I
had always wanted to go to and we took Molly and Megan for 4
days. Absolutely magical. This christmas we pushed the boat out
with gifts but lots of people had to do our running around.
Updates January 2009
Watch this space! I am now allowed to sit for longer so letting
me work on this now, so doing updates in small parts. Marg's
pain is still fairly constant, the swelling around the neck has
reduced, the lump seems smaller. We are now both driving short
distances, Marg having some difficulty twisting her head, I cannot
sit for too long. Online shopping becomes the means to an end
as opposed to the best way to save money certainly on the run
up to Christmas. We both got into "Come
Dine With Me" on Channel 4, where the only thing more bitchy
than the dinner hosts, is the narrator! For example "If you'd
like to learn how to burn lamb, then just go to the website for
the recipe". People putting food in their handbags, falling asleep
(and those are the hosts cooking the meals) it brings us a lot
of light relief. Marg went to the dentist.
January 15th 2009, Thursday
Clinic at Bolton to see Dr. S. He said that the radiotherapy
had been effective, but there is no more to be had. We enquired
about the cyberknife recently mentioned but he said it is only
effective on small tumours that have not spread, and unfortunately
does not count in this case. However he did say that there are
some new chemotherapy treatments he can use, but he'd like to
resume the cisplatin and gemcitabine, and complete the three
remaining cycles. We're booked in on January 23rd at Christies.
The pain that Marg is in is probably scarred muscle tissue so
he prescribed something for it (yet more for the pill patrol!)
and we have an appointment with a pain control specialist next
Tuesday. We left feeling pretty positive about it all.
January 20th 2009, Tuesday
To Bolton to see Dr. D the symptom control doctor. She calculated
the amount of painkillers being taken, and also asked about various
things. She advised a few things to try, using heat pads, but
recovery from this would take some time. The pain is nerve pain,
both from the cancer and as a result of the radiotherapy. She
said Marg would be worse in the mornings, so use something to
boost then we left with a prescription, and an appointment for
another two weeks. Later that day we saw GP Dr. B who put the
items on their system for repeat ordering, as well as us bringing
him up to date.
January 23rd 2009, Friday
A slow crawl along the M61 and M60 into Wilmslow. The car park
was relatively empty, but also partly closed off for the building
work. We arrived at 9.25, discovered our way to the annex, went
for bloods, but it took until 10.25 until we were seen by Dr.
B (not Dr. S) He went though our notes then we went for a baseline
X ray. We are to be on ward 5 so we headed up there, they chased
us up on their system while we went for something to eat. We
passed what was obviously an organ transplant transportation
box being taken out through the ambulance bay. One life lost
grants another a better life. When we came back we discovered
there would still be a one and a half hour wait so we went down
to the conservatory where it was cool and quiet. Finally at 3
PM we were called to start.
A cross check of name and date of birth, and the standard anti
sickness and steroid was given through the cannula then the first
large bag of saline was given (over an hour). Next the Gemcitabine
over 30 minutes, then the Cisplatin over an hour, then the final
litre of saline over 90 minutes. Unfortunately someone on the
ward was in a lot of discomfort and was being attended to by
the nurses and a doctor, and we had to wait a little longer before
we got uncoupled. We had a little flash back so needed an extra
flush, and finally left the ward at 7.55.
January 24th 2009, Saturday
We had some extra pills to take and added to the sheet so we
don't forget them, we awaited the district nurses to call to
administer the immune booster. Given in the belly, it wasn't
too painful and we queried should it be one or several. She told
us it varied. They were experienced in giving this to a number
of patients. Marg was in a fair amount of pain that seemed to
have come on more as a result of having the chemo and had to
supplement the MST with more painkillers.
January 25th - 29th 2009
Marg spent much of the time sleeping off the effects. Nurse C
phoned to see how we were getting on with the pain control regime
and I told her we had to supplement it, she said it wasn't uncommon.
Molly had a visit to the GP, and I had a trip back to the neurosurgeon,
alone as Marg wasn't well enough to attend. Nic restarted work.
The district nurses called in to see how we are getting on.
January 30th 2009, Friday
Day 8 and second week of chemo. Today the antibiotics start.
We arranged with Molly's school for her to come with us to take
the mystery out of what happens. We arrived after a journey of
an hour at 10.15 (on time) and we collected our security sealed
notes from the annex and queued up for bloods. We were 77 with
10 in front of us. At 10.50 we made our way up to ward 5 where
they said they would have to wait for the bloods to come back.
They also chased up our medication prescription. We went to get
a snack to eat and returned at 11:30 our quoted "chair time".
They told us it would be at least an hour before we could get
a slot so we went down to get something to eat in the restaurant.
It was Friday so fish (cod) was on, but there was a fight as
I was pulling my plate as the server pulled it back to pile more
mushy peas on it!
We went back up the to ward only to be told that they had a rush
of people and we would be waiting another 2 hours. We went down
to sit in the conservatory, passing a small child being wheeled
back to the a main ward, and wait... Marg got a call on her mobile
at 2.40 to go up, they were ready. We had explained why Molly
was with us so she went into the treatment room to watch. At
3 pm Marg finally wheeled out of the treatment room and onto
the main ward to a chair. First the anti sick and steroid, then
the saline, then the Gemcitabine, then the Cisplatin, then the
last litre of saline. As we were on ward 5, our drugs had been
sent up and left in the refrigerator (immune booster) and we
collected a compelted authorization for the district nurses to
give this the next day. Marg's immunity was 13 (out of 20) so
although lowered was not at a dangerously low level. At 4.20
it was decided to remove the first cannula, and replace it with
another in a different vein as it was taking too slow. We talked
to a few people, we were one of the longer treatments, first
a couple, then a lady who had to remain under supervision for
5 hours after treatment with Trastuzumab in case of any adverse
reaction.. This finished at 8 pm and we left (and left the lady
under supervision) for home. So, just as slow as last week.
January 31st 2009, Saturday
District nurse called to give the immune booster, update the
notes and leave Marg feeling much more lethargic. Marg starting
to crave a number of food, but the "danger" ones are off the
list, prawns are not allowed, live yoghurts (probiotic types),
un washed and most salads, anything uncooked, most chilled! We're
temperature checking but its all in the safe range. We're continuing
the course of antibiotics but with no temperature they are probably
doing little?
February 2nd 2009, Monday
If Candelmas day be clear and bright... It wasn't it snowed,
with the promise of more? Our GP is finding it a little tricky
to keep up with all the medication and missed something off the
list. Marg feeling quite sickly which is the expected side effect
of the immune booster. Marg saw what she thought was her hair
on the kitchen floor, but it was in fact deposited by the cat!
The snow picture had gone by the evening.
February 3rd 2009, Tuesday
Feeling worse today, a lot more pain, some nausea which did pass.
Collected missing items from the chemist, then saw Dr D the symptom
relief who reviewed the level of painkillers. She noted that
Marg's head is a lot freeer n movement but that we'd supplemented
the time release painkillers with shots so we're almost double
the dose. She also prescribed something to ease the nerve pain,
start a low dosage and may increase. Called at the pharmacy for
that. Modified the sheet, again! Nurse H was with us who also
listened how our chemo sessions were doing. It was quite a wait
but a longish appointment because Dr. D is very thorough. Mouth
is sore, tingling, sounds are starting to grate again, sense
of smell and taste has not diminished too much, appetite is very good!
February 4th 2009, Wednesday
We realised after a check that the pharmacy had miscounted the
last new drug given to us, so I had to call back and they seemed
to accept the expalantion, or realised they'd labelled their
box rather than the one they should have given to us! Marg in
a lot of pain today, her neck very stiff, however she did not
wake all night, so that's probabl the nerve drug working, but
as a result of not waking to move, getting stiff as a result.
T phoned who told us about being marked up for the radiotherapy,
and Marg told her what she was in for, and said don't forget
to get some of the special stuff. Jade Goody was in the news
this morning, her cancer had spread, and we felt for her, because
she is in a position we are now, in that it's highly unlikely
that it can be cured or fully arrested, and it's just a matter
of time. She's actually very brave and pioneering that she is
sharing her journey in the media because "c" is still very taboo
subject. (Living TV).
February 6th 2009, Friday
Clinic day! We finally got here, where we should have been on
the 1st October last year, it came as quite a relief, temperature
was all OK, in pain, but not in hospital. We arrived at 10.15,
went for bloods and x-ray (to XRD1) and waited. It was very warm,
due to the building work for the new trials unit, all windows
had to be kept closed. At 11 we were shown into room 6 of the
annex, and at 11.30, in walked Dr. S. He reviewed the drugs we
were taking and suggested increasing the MST, and the nerve drug.
He was as usual impressed with the organised record keeping and
made some notes. We are currently on 46 mg Cisplatin, we started
(last September) on 57 mg, so it was only a 20% reduction (Gemcitabine
unchanged). Bloods were showing 6 so above the "danger" level
of 3. However the platelet count was low so we have to come
in at 8.30 on Sunday to Ward 1 to be checked and if it is no
different or lower they will arrange a platelet transfusion next
week. Nurse E had let the cat out of the bag about him moving
on, and he told us he was going to start working out of Hope
Hospital so the next clinic would be the last with him. We left
with a new appointment card, x-ray card, and prescription. With
a 90 minute wait we left it for that day and merely went from
outpatients reception to chemotherapy suite to ward 5 to make
all our bookings. The building work is progressing. We got home
in enough time to meet Molly coming out of school!
February 8th 2009, Sunday
Arrived at 8.30 (am that is) to the admissions unit at Christies.
The outside temperature on the conservatory showed -2 C, setting
off from home it was -4 C, a crisp journey in, space on the car
park and walked up the glass corridor past something being mopped
up that had leaked from 'something' being wheeled towards theatre.
Admissions ward was quiet, apart from the bing bing bong of the
intravenous pumps. Blood was taken then Marg was asked to wait
on bed 3 for the results, because if transfusion was required
she could not go home until it is done. That could take from
a couple of hours to all day. We had a prearranged visitor so
I left. On the Saturday we increased the MST dose but left out
the nerve drug but Marg still needed some breakthrough relief.
Later Marg was allowed out, the counts had not changed, not improved
but not got any worse. We need to arrange another blood test
(count) for Tuesday, with results available for Friday where
we can take the transfusion along with the chemo. We have a choice
of Bolton, going to Christies or our GP's. This was an unexpected long day.
February 10th 2009, Tuesday
Bolton Thoracic to see Nurse H to take bloods for platelet count.
Molly came along with us she had been off school since Monday
with a bug that is going around (both ends!). Molly was very
good keeping clean and Marg did not get anything. She also met
Helen as well, it was all pretty quick compared to some of our
recent appointments. Marg has been getting a lot of static shocks
off lightswitches and other large metal objects around the house.
February 13th 2009, Friday
Chemotherapy Christies 3rd cycle, session 1 (Gem/Cis). On our
way we heard that Jade Goody had been given her prognosis which
upset us. Arrived at 9.45, got our bloods done and went up to
Ward 5 with our notes. They were waiting for the doctor's OK
for the bloods so we had a little delay, then they told us all
was OK, our chemo was ordered, we handed in the prescription
and we waited... The we were called at 2 pm and by 2.10 the process
had started. Bloods had come back OK, immunity had increased,
as had the platelets, so we were all set. Dr. S had changed the
MST to a higher dosage, we picked those up, and the two weeks
of courses. Building work was progressing outside... We were
sat next to someone that was having a litre bag over 3 hours,
and she would be in long after we left, which we did at 6.45,
getting home at 7.30
February 14th 2009, Saturday
District nurse called early to give neulasta. Fairly soon after
the effects started to kick in and took hold Sunday. We started
the 100 MST too. We needed to call the emergency doctors as we
had not maanged to pick up Friday's prescription for the breakthrough
pain relief. The injection made Marg pretty ill. The steroids
were having an effect and I did a fair amount of cooking. Marg's
blood pressure seems quite raised so I asked the district nurse
to check it, and my electronic machine was correct.
February 16th 2009, Monday
Monday and Tuesday were also extremely painful days. We managed
to keep all the medication down, keeping up the metoclopramide
too. The chemo side effects kicking in, Marg losing track of
time and sleeping much of the time, but the intensity of the
pain is overwheling, and she lost her appetite. Marg is also
very short of breath, it seems that the radiotherapy side effects
are coming back.
February 18th 2009, Wednesday
"I need to carry my face down stairs" said Marg. Her face has
swollen up, and so much she can't open one of her eyes and she's
in a lot of pain. The swelling went down slowly during the day
but the pain remained. On the Thursday it was the 3rd installment
of Jade Goody's battle with cancer. It was very gritty, and nothing
was dressed up or hidden, while you admired her courage, what
she was going through was plain to see.
February 20th 2009, Friday
Chemotherapy Christies, 3rd cycle session 2 (Gem/Cis). Arrived
at 8.30 quiet run in. Bloods done at 9.50, arrived on ward to
be told they were short of staff. Hooked up at 12.00, the Chemo
nurse commented that the bloods came back high, the white cell
count was well up (everything else OK too) but that indicated
infection. Temperature was normal then Marg told the nurse she'd
been having the injections, and she said that was it. Also with
regard the swelling, it was the effects of radiotherapy. She
checked with our consultant if we needed the injection planned
for tomorrow, but no we didn't. We finished at 4.05 and went
home in daylight. Wooden batton had been erected around the construction
site and were being painted green.
February 21st 2009, Saturday
District nurse to give neulasta. Not required, see Friday. Marg
counted the pills. 19. The steroids start to kick in and most
food is game. Not feeling too bad and a little better not having
to have the injection. We're monitoring the temperature like
a hawk though and we started the antibiotics last night.
February 23rd 2009, Monday
District nurses telephoned to see how we were getting on. I had
to go to the doctors to do a repeat prescription, due to the
pain Marg's gone though most of the painkillers.
February 25th 2009, Wednesday
Marg's face has swollen up again. Last night a few friends told
us about the "magic bullet" being pioneered at Christies, but
we had to explain that is it a targetted treatment only for certain
cancers. Unfortunately not ours. The magic bullet is using radio
isotope chemotherapy, in addition to a special drug being added
to the chemotherapy.
February 26th 2009, Thursday
Local centre for some holistic therapy. GP appointment. We ended
up not going to the local centre, just didn't feel well enough
to go. We saw the GP, brought him up to date and told him about
the high blood pressure we'd been recording. He took it there
and then and it was quite low and normal, but he said he wasn't
unduely worried. We left with some repeat prescriptions and an
inhaler. We also got some 10% ibuprofen gel, that is relatively
effective for the shoulder pain.
February 27th 2009, Friday
Christies clinic (x-ray, bloods, consultation). We arrived, got
bloods and xray done, then had to wait quite a while to see Dr.
S. It is the last time we'll see him looking after us as he is
moving on and we thanked him for everything he'd done. The blood
counts showed Marg was anaemic and platelets were low again,
so we have to come in Sunday for a check, and he arranged for
Wednesday for Marg to have a 2 unit blood transfusion. He offered
it to us today but she'd probably have to stay in overnight,
and it has been a long day already. We also asked, and were told
that the cancer is at stage 3B. On getting home the date does
not match the day on the midweek forms so we need to confirm
that. He said that he was not thinking of another cycle, he would
leave it at the end of this one, and arrange for a scan. The
wooden battons around the construction site were now painted
blue! This was Dr. S last clinic for us so we asked him the
life expectancy. He told us the average was 12-15 months from
diagnosis, our cancer is stage 3B. With the lump found in April
and diagnosis in September last year, which clock shall we use?.
February 28th 2009, Saturday
Marg got the taste for Harry Ramsden's fish and chips, and the
nearest we could find was Stretford, so off we went. On the way
back we called in at the supermarket for some clothes.
March 1st 2009, Sunday
Admissions unit 9 am for blood test and cross match for the transfusion.
Junction 5 on the M60 was closed so we fudged our way to the
hospital, and got there a little late. Bloods were taken on the
3rd attempt at 10 am. The results were back at 11. "Every time
I go shopping for clothes, the day after I have to stay in!"
Marg's blood counts had dropped so the doctor did a good job
of persuading her to stay in for a transfusion. Up to Ward 11
(bed 5) for 2 units plus platelets. There was some excitement
with a bell ringing and a fire engine turning up, but it was
a false alarm. I left for home to do some chores and bring her
some overnight stuff. The first bag was put on at 3.30 pm and
her blood pressure went high. That was over 2 hours. The second
bag was slowed to 3 hours and I arrived part way through with
her overnight things. I left just before 9 to pick up Molly for
school tomorrow. On the way out I passed and spoke to our consultant
Dr. S who had seen the results on the computer. Is he ever away
from the hospital?!
March 3rd 2009, Tuesday
Dr D. symptom relief doctor appointment (Bolton). This was cancelled,
we're seeing someone in a local Hospice centre on the 12th.
March 5th or Wednesday 2009, blood transfusion
2 units. Some date confusion. NOW CANCELLED. Marg's face started
swelling again, not as bad as last week, but it was noticable.
The static shocks are getting so bad in a relatively quiet room,
I can hear the crack as she touches something.
March 6th 2009, Friday
Chemotherapy Christies, 4th cycle session 1 (Gem/Cis). Ward 3.
We dropped Molly off at breakfast club at school at 8.05, we
arrived at Christies main car park at 9.10 and were sitting in
the blood waiting area and had bloods taken at 9.35. We made
our way to reception of Ward 3, and gave our notes to the scheduler.
We went for a bit of breakfast then called back on the ward who
told us there was a delay on the blood results so down to the
conservatory we went. The phone went at 10.45 to call us up,
and by 10.50 the canula was in and the steroid and anti sickness
was given by bolus. At 11 we started the chemo drugs. As this
was Ward 3, we had to hand in the prescription and looked forward
to the usual 1 hour delay. First the 1 litre saline, then the
Gemcitabine, then a small flush, then the Cisplatin, then another
1 litre of saline to finish off, and we ended around 3.50, canula
out, we collected the prescription drugs held in the fridge,
and headed home through slow traffic, the usual POETS day rush.
(Push Off Early Tomorrow's Saturday).
March 7th 2009, Saturday
District nurse to give neulasta. She called at 12:30 and within
a hew hours Marg started feeling quite ill. The pain is intensifying.
The area on her neck were the biopsy was taken is very sore.
March 9th 2009, Monday
The pain has been so intense, we're almost out of the normal
stuff so I headed up to the GP's to arrange a phone call from
the doctor. He called and prescribed something quite a bit stronger.
It has had quite a dramatic effect. If on a scale of 1 to 10
of a measurement of pain, occasionally going off the scale, it
brought it to 0 (zero). This is the first time for a long time
that the pain has completely gone. The GP explained that there
was a formula for working out breakthrough relief over and above continuous.
March 11th 2009, Wednesday
We're getting used to the stronger stuff, so much so that just
a hit of cocodamol is enough to ease during the night until morning.
Marg's face has puffed up again on the right side. This pain
relief seems to be lasting longer so we need less top ups.
March 12th 2009, Thursday
Symptom relief appointment at local centre. We met Dr. H and
we explained the whole story again. She reviewed what was available
to her, she increased the time release, told us to continue the
break through dosage and to try the ibuprofen gel to the neck.
She booked us into some physio sessons when a place becomes available.
March 13th 2009, Friday
Chemotherapy Christies, 4th cycle session 2 (Gem/Cis). Ward 5.
Dropping Molly off at breakfast club at school, we arrived at
8.55. We had the bloods done and arrived on ward 5 at 9.20. The
pharmacist checked the treatment was ready, and started to chase
our prescription. We headed down for some breakfast then waited...
At 10.45 we got a call back to the ward and treatment began.
Blood results were good, so we did not need the neulasta to be
given tomorrow. By 11.10 we were out on the ward, wheeling the
drip to one of the chairs. The medication arrived and at 3.15
we were unhooked and left. We joined the POETS traffic again...
(The picture shows a heat pack applied to her arm, the Gemcitabine
stings as it goes in). We called in at the doctors for repeat
prescription and the pharmacy gave me a bit of a grilling over
what I was picking up! It reinforces that cancer symptoms and
treatment really aren't publicly discussed often. Someone recently
commented that Jade was walking around with a themometer in her
mouth, when it is actually a pain reliver dispenser!
March 14th 2009, Saturday
District nurse to give neulasta. Not needed. The pain level increasing
but we were able to drop the level down to 0. Nonetheless wasn't
feeling too well, but at least out of pain. We're taking the
antibiotics and make the mistake of not having any food with
it, very uncomfortable. They cause heartburn so yet more medication
to combat those effects.
March 16th 2009, Monday
Today is our 7th wedding anniversary and we ventured out in the
evening for a meal locally. Tha pain is remaining under control,
there was some nausea but we quickly got that controlled.
March 17th 2009, Tuesday
The high doses of pain relief took their toll in the very early
hours so we reduced them a little. Marg very tired and lethargic,
not much appetite.
March 20th 2009, Friday
Christies clinic (x-ray, bloods, consultation and discussion
about possible additional cycle). We arrived at 9.40, got our
bloods done, no x-ray today. While waiting a handcuffed person
was led into one of the other blood rooms. Saint or sinner, cancer
is indiscriminate. went for some breakfast then saw a specialist
nurse who told us the blood counts were all low, platelets and
red cells, so he wanted us to get another blood sample for cross
match for a transfusion, and recalling what happened last time,
we didn't argue. Dr. B saw us (new permanent consultant) and
he said that they should stop now as he reckoned Marg's body
has had enough battering by the chemo, we told him of the scan
date and said he'd see us shortly after that. He reviewed the
pain relief and said he'd leave that in the hands of the specialists.
Meanwhile the transfusion was arranged, 2 units of blood and
platelets. We went to the day case unit on Admissions and waited,
they estimated we'd start at 2.30 so ought to be finished by 9 or so.
The Day Care unit was more or less full of people having blood
transfusions, mot sat around with glum faces, probably for precisely
the reason the transfusion was ordered. I left them the list
of medication so that she could recieve what she needed for her
stay then went home to get Molly to the Party. "Do you know how
to Iron things?" Molly asked as I got her clothes ready for the party...!
Marg's first blood went up at 3.30 and goes through one of the
intravenous pumps, the famous bing bing bong. They regulate and
set the flow. I watched as Marg had the cannula put in (first
attempt hit a valve in the vein and was very painful) and the
device with a twin chambered arrangement was threaded into the
pump ready for the transfusion. The platelets are given just
as a normal drip. We both wondered whose blood it was, but it
is at times like these that you wonder at the skill and creativity
of preserving human life. The garden area in the middle shows
that life continued, I recall last year when we first started
how the flora looked so calming, and through the depths of winter
some greenery remained, but now there was a clear rebirth of
the colour. The second blood finished at 8.40, then a small flush
is applied to set up for the platelets. Marg's blood pressure
was 196/100 at one point so they were skeptical of letting her
home, however I said that we'd seen the GP and recorded such
high values before, so they let us home at 9.40
March 22nd 2009, Sunday
Mother's Day. Molly had got her mum a custom card from Moonpig
and a "Mum" bracelet. Her daugher Steph called with chocolate
from them and Marg's granddaughter Megan (and Josh). Later we
went to my parents to give them our gifts, a collectors doll
that my mum wanted.
March 23rd 2009, Monday
Dr H symptom relief to review. We updated the doctor so far with
the dosage recording, and she changed the main pain relief to
something else, she faxed the GP to prescribe. The day before
(Sunday) was Mothers Day, and Jade Goody had lost her battle
in the early hours. No time is the right time to die, but it is so sad.
March 24th 2009, Tuesday
We picked up the new medication and switched to it in the evening.
Pain levels increased so the next morning the dose was increased
but it was having no effect. Pain levels remained extremely high.
Very bad couple of days. Marg's blood pressure dropped to very
normal levels, her temperature dropped to 35 a couple of times.
March 26th 2009, Thursday
Local centre for physiotherapy and alternative therapy. Marg
simply was not well enough to go. The previous night we switched
back to the original main pain relief which had some effect.
We got a home visit from our GP Dr. B, and he reviewed things
and said we are in the hands of experts, but we could try the
diclofenac with a dose of Omeprazole at the same time (already
taking this one a day in a higher dose) so we tried that. He
also was not too concerned about the cocodamol. Almost immediately
taking the diclofenac the pain relief started, it was quite a
good night comparitively. The muscles which are hard in Marg's
shoulder and back are easing.
March 30th 2009, Monday
My employer has been very supportive allowing me to work from
home. This involves mostly early starts and late finishes with
breaks betweek to attend to domestic matters, as well as caring.
This afternoon there was a phone call from my Dad to say the
neighbours' construction workers were cutting down his fence
and did I know a good solicitor. Marg on hearing this jumped
up from her TV chair and demanded we went round immediately to
see the damage and discuss. The picture is of Marg, still in
her pygamas top, but walking back having examined the evidence.
This is so typical of her, caring and concern for others. Marg
asked me to call the GP for oxygen Later that evening I paid
the deposit-balance for Steph's Mexico wedding for Marg, Molly
and me. We sat and watched Crimewatch on BBC before going to bed.
March 31st 2009, Tuesday
At 2.45 am Marg awoke breathless, and at 3 am an ambulance was
called. The paramedics gave her oxygen and took her to resussitation
at Wigan Infirmary. Although the doctor believed she had less
than an hour at 5 am, she relaxed and started to feel better,
family attended while Marg's wishes of being at home were observed.
The SPO2 machine was disconnected, it was reading between 78
and 88 and very erratic pulse. She was transferred to Shevington
ward to a side room, very hot and stuffy while the hospital staff
arranged things. Marg complained of not being able to breathe
again and saying "there's nothing coming out" when it was on
full flow (15 litres/minute). Her SPO2 was measured again and
it had dropped back down to the lower 80% and under, skin was
mottled and clammy, just as she was at 3am. Some family went
to our home to recieve the oxygen and the bed. This was all done
by about 2.30 pm but we had to wait another 2 hours for a suitable
ambulance. Marg said she was frightened but back in September
she told me what she wanted and although she was saying she was
frightened of going home, I persevered. It took us 40 minutes
in the rush hour traffic going the 2 and a half miles, but the
ambulance "blued and twoed" it! She is here now with neighbours
and friends and family around. The original supply was 4 litres/minute.
The extra oxygen arrived about 8 pm and a mass of tubing arranged
to provide 15 l / min, and the single lower pressure bottle was
replaced with 4 high pressure units, giving the rated 15 l/m
for 2 hours. The district nursing team arrived about 10. Steph
stayed over, we had quite a housefull.
April 1st 2009, Wednesday
After yesterdays episodes of Marg putting fingers up at people
(!) and criticizing the fact that I had not put the front curtains
straight (several times), in a house with several oxygen generators
and several backup bottles, Marg is feeling and looking a LOT
better. While I tried to get some sleep, Steph helper her with
daily ablutions and she flipped up and down the channels on the
Sky TV and we're fairly sure it was Jeremy Kyle that brought
her round! She's had some of her regular medication. The machines
are not too intrusive and are doing their job. Dr B our GP called
and review everything and gave us liquid antibiotic to help,
and requested I contact the oncologist consultant at Christie.
Later that evening she tried to have a walk without her oxygen,
it didn't help. Some medication and she slept from 11pm. The
nurses who called more or less ordered me to bed!
April 2nd 2009, Thursday
At 5.45 am I was woken by Pat who was sitting in, she wanted
a brew and the TV on. After a night of deep breathing I also
got some sleep for the first time. Marg started taking most of
the regular medication, so starting to get back into the regular
routine. Some family went home and we had a "shift change" to
allow another sleep session tonight. The pain control team from
the hospice (J and colleague) came to visit to review how things
are going so I explained the story over the two and why we'd
changed back, and discussed the record of the constant / time
release and break though, as well as gave them the story so far.
The said they could arrange trained medical sitters but I think
family are best. The drier had packed in (no heat) so I went
with Steph to pick one up as we'd be doing lots of washing now.
Fried rice and curry, appropriately constructed tea (strong,
not much milk, no sugar) and Marg settled. Yesterday I had phoned
our specialist nurse H from Bolton who had been heeping updated
with progress and took a message to speak to Dr. B our consultant
oncologist and he phoned and I told him what had gone on. He
was happy that Marg was stable and wanted to keep her scan date
later in April assuming she is well enough to travel. He had
seen the x-ray taken at Wigan and said we should carry on what
we are doing. Jason gave her a tip for the National on Saturday.
It is bad enough with one family member having cancer, however
Cathy's better half Carl, his mother so sadly passed away in
the early hours due to the same, words cannot express how much
you feel for her son and understand. Marg was so sad to hear
but it was right to tell her. Typical she had more concern than for herself.
April 3rd 2009, Friday
This is turning out to be a rather long 'hour' since Tuesday
morning. At 7 am most were sleeping and we're 24 hours without
any marked clammy hands or mottles. Fatigue is obvious and Marg
is resting, but breathing deeply.
The grey machines whose filters are checked and cleaned daily
are generating oxygen, buzzing puffing and clicking, and if the
mains fails we have a total of 8 hours supply through the cylinders
(2 hours per cylinder).
I went up to the GP and pharmacy to pick up some prescription
drugs, plus additional medication in vials for the nurses to
be able to keep her pump going over the weekend. The called round
shortly after to refill the pump and check it, and her! Her temperature
is hovering around 35.8 C. Time for a shift change and I took
Marie and Cathy home, and I dropped off the loaned pump back
to Wigan hospital and I met Nurse D and I told him of the progress
so far. I put down Marg's tip for the Grand National When I came
back Pat had arrived for the night shift! I also put some batteries
in the wireless door bell I got so that Marg could summon us
/ me without shouting. Steph has been with her all the time and
the only one trusted with her ablutions!
Marg had some of her "usual" special orders from one of the local
Chinese takeaways (King prawn and chinese cabbage with spring
onion). They make a meal to her specification (!) Marg eat most
of the prawns but not much more. The district nurses phoned to
ask if we wanted a night visit, we decided that we did not need
one but they said use the emergency numbers if we needed them.
With the mass and constant stream of visitors, this was welcome
relief that at least they gave us the choice. I had a good night,
the first since Tuesday. This is also the 4th night that we have
had the central heating switched off. The heat given off by the
oxygen generators is keeping the whole house warm.
April 4th 2009, Saturday
Marg started to feel a bit panicky and not able to breathe again
around 7 am, but a quick dose of relaxant and she calmed and
slept. Apart from a quick jive, and taking all her regular medication,
she's been fairly dozy. Her temperature has climbed to 36.1 C.
Meanwhile Steph took Molly out, with Megan, shopping, while Pat
and I did the mopping and cleaning circuit. In doing this I decided
to resurrect one of my UPS systems, I have a large 6 AMP with
batteries in fair condition so I decided to deploy it. Three
of the generators were plugged into it, but with each drawing
2 AMPs, the fourth machine is still plugged into the raw mains.
If proof were needed that the more you have the more likely you
are to see a failure, one of the machines has a yellow light
and is beeping. At 12 I called the 24 hour number and I have
replaced the machine with a cylinder set at 4 l/m. Someone is
coming out this afternoon. I told them it had been unplugged
and plugged back in again but they said not to worry. It is surreal
today, Jade's funeral is being televised, if ever you needed
a reality check of mortality.
Oxygen engineer called at 2.30, 5 minutes after the nurse arrived!
She made up the 24 hour driver and went through the usual checklist
while I asked the gas man to move the machines into the adjacent
room. It was Pat's idea and he agreed and basically put an extension
on the pipe. I told him and he was happy about the UPS. He checked
the machine and he said that it can alarm due to back pressure
caused by the other machines or working just that little bit
too hard. It did not alarm after he reset it but I told him it
was the machine that went clunk, so he said he'd change it anyway.
He also said that we should have had two high pressure machines,
and they are due Monday. Oh joy, another visitor! With the nurst
finished and the oxygen man done, I quickly went to the local
supermarket for some odds and ends and returned to watch the
National. Pat stood on the newly extended pipe in her heels and
Marg started squashing the oxygen reservior bag as I ushered
Pat to not stand on the pipe!
Our tip "Darkness" came in 13th, at least it didn't fall! The
100-1 winner Mon Mome, well, at least it was a real outsider,
we've been gutted if it was a favourite! I went out to a place
in Bolton that has set daily meals, Saturday is always Biriani
day, one of Marg's favourites. She didn't eat much and slept.
Marie is on the overnight (with Steph), she'd earlier been to
Hope Hospital to visit a girl who had been pretty badly injured
in an accident. Nora called in earlier and was going out for
her birthday meal, 70 tomorrow!
April 5th 2009, Sunday
A cold but bright day. While Marg had a wash and her ablutions
with Steph, I went out with Marie to get some odds and ends.
Marg has been pretty quiet and sleepy most of the day, and woke
for about an hour in the evening before nodding off again. Pat
was on the nightshift today. Marg needed no breakthough pain
relief, but her temperature remained low. Yesterday my SPO2 meter
arrived and I was using it on and off. It measures the oxygen
concentration of the blood, and the pulse and pulse strength.
While at rest Marg was showing 99% (normal aged people have 95-97%).
She had a wander to the water closet, assisted but her oxygen
pipe was long enough to let her get there. She got back and her
SPO2 was a little lower. When the nurse came she swapped the
site of the needle for the driver from her tummy to the right arm.
April 6th 2009, Monday
A quiet night and Marg woke at 8.30 and took all her medication.
The oxygen company rang to say they had none of the high flow
units in stock presently but we were top of the pile, as the
existing units are providing the prescription dose. Dr B called
as I arranged a home visit and we discussed her being quite sleepy
all the time, temperature and so on. We are going to keep the
room warmer than it has been and a couple of hours later her
body temperature had risen by a few points. GP will call again
Thursday to review and prescribe in view of the Bank Holiday
for Easter. District nurse called and changed and reloaded her
pump. We'll need to review the medication required on Wednesday
for ordering Thursday. Dr. B called back to tell me her bloods
taken last Tuesday indicated she was fighting an infection.
District Nurse A called to reload her driver at 2.30. At 4.15
Marg decided to take a walk to the WC, which she managed, however
the driver fell and pulled the newly sited butterfly needle out.
I gave Marg some tablets and called the nurses, who called out
within 30 minutes to refit the driver. They have to reload it.
Early evening Marg got quite agitated and when the evening shift
nurses called at 10 pm, they noted that the needle fell out again,
so get the next shift we resite it (11.30 pm) as we were out
of butterflies. They also added a secretion supressor to the
sedative, and increased the dose of sedative. As they had to
make it up again from scratch, I have to go to the Doc's tomorrow
to re-order everything.
April 7th 2009, Tuesday
Marg had a relatively reasonable night but wanted a dose of breakthough
and became very agitated. (7 am) Lots of people called, but the
mass of people don't really help, but they rallied. I called
the district nurses who came out and Staff Nurse E came out to
see her. As Marg had been unable to take her oral medication,
we needed to replace some in the syringe driver, and add some.
Earlier that day I ordered some medication but it was clear we
needed more and I headed back up to the GP's where he countersigned
the authorization. I also found myself between the GP and nursing
staff, the GP was concerned that when the needle falls out that
they dispose of the made up medication and make up an additional
batch. It is protocol for the nurses but Dr B questioned it,
and I have to say I was on Dr. B's side having seen them do it
twice in a row. It's because of the risk of infection, but the
pump is an outward device so surely some common sense can prevail.
Dr. B said he would see us on Thursday.
I also had to chase (ring) around pharmacies to see who had in
what was required in the correct sizes, then pick up that medication.
The District Nurse also spoke to our pain control specialist
to get her advice and the sliding scales on the other sheets
were adjusted, the nurse took the sheet and got the GP to counter
sign that, and I returned home with it. She was more settled
now, and we also found a cold damp flannel on her forehead was
helping. Steph was cooling her off and making sure her lips were
moist using some of the things we'd been given.
Her body temperature had now risen to something more like a normal
figure, and I guess this was why she was more bothered. Throughout
the day it was "normal" so bringing up the room temperature has
worked. Pat went home, Cathy too, and Marie is on tonights shift.
Steph was here too, she never really left her side apart from
errands. The evening staff called at 8.30 and gave Marg a subcut
of pain relief and the calming. They also offered to give her
a wash down and we changed the bedding over too. Then settled
to watch Shameless. It has been a VERY long day. Nonetheless
from time to time Marg did respond to questions.
April 8th 2009, Wednesday
I went to sleep at 2 am when I managed to stop Marg's temperature
going over 38. I awoke with a start at 5 am, and she was over
39 C. I called the emergency doctor who came out and suggested
we get the faily around. Meanwhile I was lent a large fan and
with windows open her temperature came down and she started to
respond a little more. Everybody came and Marg's temperature
came down. Marie made hot cross buns for everyone at half past
9, but tripped the mains by using a knife to try to get a bun
out of the toaster! Luckily the UPS kepts three of the oxygen
generators going, the 4th restarted when I climbed into the garage
to reset the earth leakage trip breaker.
I tried to bring energy and light to her, I held a mirror outside
and reflected sunlight onto her. "Step by Step" Whitney Houston
was playing, this was her song, her tune.
Throughout the day she has responded to visitors and this evening
remains calm and mostly sleeping. Earlier the district nurse
calculated the medication Marg would need over the bank holiday
and I mentioned it to the Pharmacy. Meanwhile Dr. B the GP called
to explain he was hoping a colleague would attend with him tomorrow
to hand over as he was on holiday next week, and he wrote up
the scripts for Marg's medication. Pain relief was added to the
driver. The evening nurses saw she was settled. During the night
I was up every hour (setting my alarm) to check on her, or when
I just seemed to wake. Steph and Pat were with her all night.
April 9th 2009, Thursday
Margaret passed away peacefully at 9.45 am.
- + o - O - o + -
Sleep in painless rest
- + o - O - o + -
Marg really didn't like flowers too much (and most plants didn't
last long either) so rather than flowers I am asking for donations.
I am primarily considering Christie Hospital and Cancer Research.
The Christie use money to fund additional equipment and resources
for patient care, Cancer Research obviously we hope can find
a cure for this and other cancers to stop others going through
the pain we are. The work undertaken by the Christie is shared
globally. Marie one of our neighbours has suggested to some of
her friends that they could give blood (Marg used 4 units during
her journey) so that is another option. Please consider giving
via Gift Aid which allows the charities to reclaim the tax paid
on any donations.
I will be putting details of her final arrangements on here,
it will be at St Edwards in Scott Lane, Newtown, Wigan, a crematorium
TBA, and I am wanting to arrange a wake most likely at The Wakes
in Hindley, venue and timing to be confirmed. I expect this will
all be after Easter week 20th April onwards. I also want a book
of rememberance, rather than just names I want the stories, of
which there are many to tell, many I know, many I don't know,
because I think we should remember her as she was, her humour,
wit, the loving things. It will be a loose leaf book so if you
write on your own paper, then we can insert it in the book. It'll
be a living book and I will add to it as more stories come in.
To give you an idea most of our neighbours have nicknames and
apart from the neighbour concerned usually kept them to herself
(and other neighbours!). I will never forget the day I got the
text "can we have a little dog", and after several of these I
sucummbed and we got Jack, a rather overgrown Shi Tzu. Of course
he needed a friend and along came Sally. We had baby monitors
when she was in pup so we could help with the birth, and we did.
The only time my bags were packed (and I was out) was when the
dogs went missing through the open side gate. I spend all day
looking and a neighbour Julia cornered and got Sally, as Marg
returned from a night shift the next morning, after my many hours
searching and calling between Ince, Bickershaw and Westleigh,
he was carried on a bike into our street with the words "anyone
lost a dog?". Miracles do happen.
We had to get a nice wooden bench for the front of the house
(replacing the others in turn), so I put up a scale of charges
for people using the bench, most charges written off for good
gossip. Marie one of our neighbours told me some while ago that
Marg and her were sat on our bench discussing what the lump in
her neck could be (pre diagnosis) and they decided it wasn't
cancer and both lit up a cigarette to celebrate!
The stories surrounding all her cars warrant a book in themselves
but when she ran into the garage wall, she said she forgot to
brake. Briefly from when I started getting her cars, the first
one was joyridden and written off, the second had a knackered
engine and we got a towing bill for it where it was abandoned
by the new owner who'd not completed the V10 slip. The next petrol
got in the oil and the engine exploded, the next had an unexplained
incident resulting in a bucked wheel rim, and extensive damage
underneath ansd the loss of the passenger wing mirror. Her Fiesta
the pride and joy had a smashed back window due to loose roadworks,
was nearly stolen but the immobilizer saved it, burnt out interior
when it caught fire during welding for an MOT (By the Horwich
arsonists as she called them) and the little ZX has mostly behaved
itself, apart from duff heater plugs and wonky sound system.
Oh and the power steering pump breaking.
In the early days of knowing her she tidied up my batchelor pad,
and in doing so unplugged a computer I always left switched on.
She sat down with the cats and discussed what to do, plugged
it back in and (it) carried on!
Having our child was quite a battle and it took a while. We went
for fertility and so on consultations and we treasured the memory
of the Chinese doctor getting his laptop out to try to explain
something to us, then say "uh, no battery".
I lost count of the number of times she brought washing home.
Patients she had befriended during the night with no close family
and she'd wash, dry and iron their clothes ready to take back
on her nightshift.
Chocolate was one of her downfalls. The drawers at the sider
of her bed were always filled with the evidence, and she'd often
hunt around the house, particularly in places I thought I had
hidden things well. She denied all knowledge and when accomplices
were involved she created an elaborate story.
Birthdays for kids in the street were never forgotten.
Please anything you want to type or hand write bring along or
send and I can include it. Single or many stories and I will keep collecting.
You can also email your stories to Marg's
email address (just click it) and I will print them out.
Funeral details. Margaret will be home in an open coffin Monday
20th. She will start from her home at 11 am on Tuesday 21st April
(after Jeremy Kyle) and go to St. Edwards in Scot Lane, Newtown,
Wigan WN5 0UA for 12:00 (dedicated car park). This is RC and
it will be a requiem mass to allow something more personal to
her. From there it will be to Wigan Crematorium, Cemetery Road,
Ince, WN3 4NN for 1.30 where the music she requests will be played.
"Step By Step" Whitney Houston (words Annie Lennox). Following
from that I am arranging a Wake at the Wakes in Hindley Lancaster
Road / top of Borsdane Avenue, Hindley, WN2 4JA. I will have
a book and sheets for you to write, please come along and share
your happy memories of her.
St. Edwards
Notices are going in the Wigan
Evening Post, Wednesday 15th and Friday 17th, and in the
Wigan Observer on Tuesday 21st.
Thank you to everyone that came there were so many of you, very
touching and it has made things easier.
The crematorum and gardens of remembrance looked nice in the
sunshine with the cherry blossum.
.
We had only family flowers, and we picked colours and designs
she would have liked. Total donations recieved to us was over
300 pounds and The Christie could also see other gift aid donations
in Marg's name, thank you. I know many of you are giving blood too.
Her ashes have been laid to rest and adjacent to her mums (Catherine)
which were part of her final wishes, the turf which was raised
can be seen in the larger picture (click the small one).
We will be celebrating her 50th in her spirit.
We have the deepest respect for someone so brave, the journey,
even to here, has not been easy, life is a precious thing too
short to spend on material things and petty arguments. We only
need to think of what she would have done to know what to do.
Future Appointments (FROZEN)
April 9th, 2009, Thursday
Pain relief review and rearranged appointment for alternative
therapy. Wigan and Leigh Hospice. Team now doing home visits
April 15th, 2009 Wednesday
CT scan at Bolton Royal.
April 24th 2009, Friday
Scan review, potential additional treatment planning, blood tests at Christies.
Ongoing visits from district nurses.
Longer term
After a course of treatment, monitoring then applying therapy as required.
October 2009
Daughter Stephanie gets married in Mexico
(and travel insurance is now extremely expensive). We were quoted
approximately 1000 pounds for Mexico / North America, and around 200 pounds
per European trip.
(That picture is of the car park and the Oak Trees in autumn 2008)
Links
The Christie NHS official web site
Christies
on wikipedia
Cancer backup detailed
information site
Cancer Research UK
(next door at Christies)
Radiotherapy
at Wikipedia
Chemotherapy
at Wikipedia