Dragon'sWife
Cancer Treatment

2004 - 2006

Died: Sunday 17, Sept 2006, 12.00 mid-day


On Thursday 15th July 04 we found out that my wife had stomach cancer!

She had previously been having lots of trouble eating, so after various doctor visits, she had an endoscopy, (they climbed down her throat, had a look around, found a thickening at the base of the esophagus, and took many biopsies)

The tests proved positive for cancer!

On Friday 16th she had some blood tests and a CT scan.

On Monday 19 we went to the specialist.
The scan appeared to show that the cancer was at the bottom of the esophagus, top of stomach. No other organs showed signs of any growths.
That's a good sign.
An operation is planned sometime next week.

The operation will involve:
Cutting open rib cage,
deflating one lung,
removing bottom half of esophagus,
removing top half of stomach,
opening valve at bottom of stomach,
raising stomach up into rib cage,
reconecting everything back together.

Big operation!!

On Thursday 5th August she was measured: height, weight, Blood pressure, Xrayed, etc for over 4 hrs.

On Thursday 12th she will have the Big Op.

The Operation went well. 5 to 6 hrs long.
Opened up from below the navel up to the rib cage, then following a rib around up to behind the right armpit.
Top of stomach and bottom of esophagus were removed along with 25 neighbouring lymph nodes.

Over 50 staples were used.
At one point I counted 14 tubes and wires coming out of her

Some days she is good (almost normal) when the pain killers work (can't remember the name of the needle feeding drugs into her spine)... other days the pain killers don't work at all... and others she is zonked to the eyeballs (just an expression)
She doesn't like the Morphine.

Thursday 19th: told that 11 of the 25 lymph nodes tested positive. Extremely bad news!
Drinking first fluids today since Op.

abdomin stitches
This image shows the lower abdomen cut,
with every second staple removed.

The other cut under right breast around to behind right sholder is a similar size.

Friday 20th: told that the mean life survival length for this condition is 18 months!!!
She seems to be coping pretty well...
despite the bad news.
Looks like she might be coming home this Monday (with any luck)

Half the staples were removed today
Ate her first soup and jelly and icecream today.
She hadn't eaten anything near solids for months

Sunday 21: removed remaining staples... there are now no drains or tubes attached

Monday 22: Came home today!
During her stay in hospital without food, she has lost a lot of weight... however, while being on a drip, she had retained a lot of fluid (hiding the fact that she had lost weight).
Since being off the drip, she has quickly absorbed the extra fluid, and now looks very sunken, especially around the eyes.

She has a serious lack of appetite...
tis very hard to get her to eat anything.

Wednesday Sept 1st: Visited Oncologist
We were told today that without treatment,
she has a 20% chance of survival...

and with unpleasant chemotherapy treatment,
she has a 25% chance.

Monday 20 Sept: CaT scan
A cat scan was taken today... in preperation for the Chemo and Radiation therapy.
This involved drinking a lot of water in one hour....
(more than she has been able to drink in most weeks)... =/

Every day on average is a little tiny bit better than the day before...
However some days are not so good... and we haven't started the chemo yet! =/

Food: She is having a lot of trouble coping with food.
No matter what she eats... it makes her sick.
So gradually she is going of all of the few foods that seemed to work a few days back.

Burping now involves the body thinking it has to throw up...
Very painfull, exhausting and embarasing for her.

body still losing weight... =/

She said today.... if she were a cat... she would have been put down.

Wednesday 21 Sept:
Maybe found a cure for the nausea.... a little gingerbeer... bunderburg.
Either that or the nausea pill that she took at the same time.
(it hadn't worked that well previously)

Thursday 22 Sept: tests
Kidney function tests today...
Injected at 9am... then blood samples were taken at 11am, 1pm and 3pm.
Radioactive... so she needs to avoid pregnant women and babies

Friday 23 Sept: More scans
Radioactive saline injected again this morning... followed in the afternoon by a cat scan.
Working a bit like an Xray in reverse, She radiated energy while the scanner collected the data and showed the image on screen. I saw 2 normal looking kidneys, a liver and a spleen.

This was one of her better days so far... manged to eat almost normal food.
That makes a change.

Monday 27 Sept: Looking better
Things are looking much better now, she is eating without wanting to throw up all the time.
Much stronger and healthier looking...
Saw the surgeon today... He said that everything looks good, though there is some fluid around the right lung. No idea why that has happened. Not particularly worried about it as long as it doesn't get worse.
She also has a cold now... has gone to her chest, (hurts when coughing) but it is not too bad. taking lotsa antibiotics.

Sunday 10 Oct: Still Looking better
Things are still lookin better. She drove her car for the first time yesterday.
Friends have been popping in, that has made her feel lots better. Especially an old friend who stayed for a couple of days.
The Cold seems to have passed with very little hassle.
She is still very thin... skinny legs with boney knees, no buttock at all!
L ooses energy very quickly... but is generally feeling much better.

Scary Chemo related stuff is to start this coming tuesday.

Tuesday: saw the dietitian, chemo Dr and radiation Dr
Wednesday: had a PICC line put into left arm. (this has a tube that runs up in towards the heart

XRAY XRAY tool
Xray showing the PICC path towards heart
(click to see larger)
StarGate like
Xray tool
(click to see larger)

Sunday 12 Oct: Haircut
Cut hair short. Razor cut... looks good. This was to gain control of appearance, before the hair falls out from the Chemo.

Chemo week 1 thurs 14 - wed 20
Thursday: The PICC line is used to inject the 3 nasty Chemicals in... the last of the 3 is a continuous feed that lasts for most of the next 16 weeks.
Chemicals: epirubicin, cisplatin, and 5-FU
5-FU is continuous for all of each treatment period...
The other two chemicals are only once for the start of each 'chemo only' treatment period.

Started throwing up at about 6pm on thursday night... 24 hrs later, still going at the moment... I am expecting this to last for the next couple of days... this time.

Stopped trowing up on tuesday

Chemo1 week 2 thurs 21 - wed 27
Things are much better now... almost better than before the op.

Actually gained a little weight this week (which is a good thing) after many months of losing weight.

Chemo1 week 3 thurs 28 - wed Nov3
Still getting better... very tired most of the time, but nausea is under control.
Hair starting to loosen.

Two weeks off thurs Nov4 - thurs18
The Chemo has stopped for now... and the Radiation delayed as they rethink the treatment. With the radiation 'target' being the stomach and aesophagus sitting up near the heart and lungs, and the remaining neighbouring lymphs down near lower abdomen organs... The target Area is extremely large and awkward to radiate without seriously damaging important organs.

Two weeks off fri 19
blood tests, xray and laser realignment, a new tattoo added in preparation of a redesigned radiation scheme planned to start on Monday 22 (daughter's birthday)

Cat Scan Machine
and No this is not a Stargate.


Radiotherapy Machine
It rotates and swivels...
and no, that is not a photocopier.


Cat Scan Slice
(centre of treatment site)
showing the 6 radio paths

Radio Therapy Monitor
showing an Xray and mask
for one of the 6 treatment beams.

click to see larger

(Notice the fatter rib on the top left of image? we now believe this rib is was broken)

Radiotherapy and Chemo2 mon 27 Dec
Well the last 5 weeks went better than expected.
The treatment area was larger than most, with 6 interwoven beam directions everyday (from Nov 24 - Dec 24) gradually 'cooking' the internal tissue. Plus continuous Chemo (5-fu)
It was expected that eating would stop halfway through the treatment, however, eating solids (including meat) continued throughout. In fact, Xmas dinner (the day after the final radiotherapy) was enjoyed, and included many slices of ham.

Distractions house and grand daughter
The final weeks of radiotherapy had a number of pleasant distractions.
We have just bought a new house, and had a new grand-daughter.

Rest 25 Dec - 23 Jan
After the Radiotherapy she had four weeks off to recover.
(Dec 25 - 23 Jan)
Didn't recover in the rest period as much as expected but still not too bad.

Chemo3 24 Jan 05
(24 Jan - 13 Feb)
With lots of extra anti nausea medication, this chemo cycle was very mild in comparison to the first. No Vomiting. However fatigue was intense, sleeping a lot.
One of the anti nausea drugs (Dex for short) has a side effect of being an 'upper' (as I understand it), so when it stopped being taken, depression was the result.
Depression and fatigue eased on Feb 01.

Hair started falling out big time on 13 Feb, though it still looks pretty normal. (Scalp was pretty tender for 3 days prior to hair falling out)

Chemo4 14 Feb 05
Not eating as well this cycle.
Body weight has gone up and down a bit... but mostly down weight now is 53kg (it should start picking up again soon)
Hair loss has slowed down... it seems to hit hardest towards the end of the 3rd week of each cycle.

Post treatment 26 Apr 05
All chemo and radiotherapy completed.
PIC line removed.
Body weight starting to slowly increase.
Attempting to go back to work soon.

One year passes... 05 - 06
She has returned to work successfully (just completed a full year), but has had some changes to her lymph nodes above the left collarbone. Hard lymph glands appeared (apparently multiplied) and now seem to have disappeared again. Increasing pain in her spinal/pelvic area has been a concern.

It returns in another form 19 Apr 06
A bone scan has revealed that the original gastric cancer has spread to her bones, particularly her back left pelvic bones.
(multiple metastases including mid shaft left femur)

Life Expectancy
Research online shows a wide range of possible life expectancies for a gastric cancer that has metastasized to the bones. (which by the way had very low odds of occuring... to the bones that is.)
Each cancer reacts in a different way, depending on where it comes from...
One line of research shows an average of 3 months after the discovery of stomach cancer metastasized to the bones.
Another shows an average of 5 months.
The longest known survivor lasted for 3.5 years.

Radiation 26 April 06
8 grey of radiation was used to treat the wing of pelvic bone... (Palliative pain relief)
(one grey is enough to cause radiation sickness)
Pain is likely to increase for a week or so after the treatment, before it takes effect.

Continuing 05 May 06
Paracetamol and Voltaren appear to be still controlling the pain at the moment.
Anti anxiety medication is also helping her deal with the stress and appears to be working well with little or no side effects.
The Cancer is confirmed at this stage in the left (Ileum) wing of pelvic bone, upper left Femur. It is also suspected in the right armpit area and an upper left rib.

She has up and down times, but mostly appears to be as content as one can be, and dealing with things pretty well.

Cat scan 23 May 06

Chest:
A cat shows inumerable tiny nodules scattered throughout both lungs (pulmonary metastases)
Some compresive atelectasis in lower right lobe adjacent to the intra-thoracic stomach


No axillary, hilar or mediastinal lymphadenopathy
No pleural abnormality
No definite bony lesions in chest.


Abdomen:
several new small left sided para-aortic nodes just below level of renal hila

No abnormality in:
Liver, Gallbladder, Biliary, Spleen, Kidneys, Pancreas or Adrenal glands
No pelvic lymphadenopathy

A Day of Meds :

every three days

Durogesic 50
Fentanyl Patch

opiate pain relief

Due to her difficulty taking pills, the morphine and paracetemol is taken in liquid form, the voltaren is taken as a suppository, and the fentanyl is taken through the skin as a patch.
3 - 5am
1 or 2x2ml Morphine (5mg/ml)
Haloperidol
opiate pain relief
antinausea
6am
1x2ml Morphine
20ml Paracetemol
1 Losec
2 Citalopran
opiate pain relief
pain relief
stomach acid reduction
emotional balance
10am
1x2ml Morphine
20ml Paracetemol
opiate pain relief
antinausea
10.30am
Voltaren 50
anti-inflam pain relief
2pm
1x2ml Morphine
20ml Paracetemol
opiate pain relief
antinausea
4.30pm
1 Losec
Haloperidol
stomach acid reduction
antinausea
6pm
1x2ml Morphine
20ml Paracetemol
opiate pain relief
antinausea
6.30pm
Voltaren 100
anti-inflam pain relief
Bedtime
1x2ml Morphine
opiate pain relief

Infusion 16 August 06
to reduce bone pain and dehydration

This did not appear to work ... she was bed ridden for two days, (for a woman that refused to stop work, this was a huge backward step)
For the first time, she said she thought she was dying.

Large soft swellings appeared over her pelvic and thigh (where the initial bone cancer appeared). A few days later the swelling then encompassed her entire left leg, and also less noticably her right leg. The leg swelling reduced after a day of keeping her legs up, but the left thigh, pelvis, and slightly up into the waist, remained swollen from then on. (her tissues were retaining fluid).

A more recent Day of Meds 20 August 06
how things have changed...

every 3 days

Durogesic 100
Fentanyl Patch

opiate pain relief

Morphine taken when required:
4ml Morphine (10mg/ml)
(at one point taking up to 6 times a day)
6am
20ml Paracetemol 250mg/5ml
1 Losec 20mg
2 Citalopran 20mg
pain relief
stomach acid reduction
emotional balance
10am
20ml Paracetemol 250mg/5ml
pain relief
10.30am
1 Voltaren 50
anti-inflam pain relief
2pm
20ml Paracetemol 250mg/5ml
pain relief
5.30pm
1 Losec 20mg
stomach acid reduction
6pm
20ml Paracetemol 250mg/5ml
pain relief
6.30pm
1 Voltaren 100
anti-inflam pain relief
Bedtime

1 Nortriptyline 10mg
2 Haloperidol .5mg
2 Coloxyl 50mg

nerve pain relief
antinausea
Laxative

Resignation Mon 04 Sept 06
She resigned from work today. not enough energy to continue anymore.
Lungs crackling when breathing... very shallow breaths... becoming puffed very easily.
Can no longer walk, using wheelchair to get around.
Leg swollen... started after infusion as swollen areas over hip and femur pain areas... then moved to ankle... full leg... then back up to hip again.
Sleeping most of the time...
Dreams becoming very real. Moving continuously during sleep, acting out dreams... then when waking, taking a few minutes to sort out what is a dream and what isnt.
Dehydrating... perspiring...

May only have a few weeks left... hard to tell

Monsters Fri 08 Sept 06
Last night (thurs) the dreams were disturbing.
Had Rivotril prescribed to ease the sleep and reduse the twitching (as i understand it)
Gave her 3 drops about 7pm and she had some 'arm moving, talking' sleep...
Gave her 3 more drops at midnight (bed time) and within seconds she moved into an alternative dream-world and didnt come out of it until about 8am.

The events at the end Mon 11 Sept 06
The events that lead to the death of the dragon's wife have been put on a seperate page.
Warning... They may make unpleasant reading.

Death Notice Sun 17 Sept 06
The Dragon's wife died in hospital on Sunday 17 Sept at 12.00 mid-day. funeral at the Christchurch Catholic Cathedral on Wed 20 Sept at 1.30pm

"night night Anne"

Footnote from her cats
Towards the end, Anne often mentioned the feeling of a cat walking over her. Sometimes in the middle of a conversation she would stop and say that a cat had just walked across her belly or up her arm and shoulder.
Two of her dearly loved cats, Lise and Willy, who had died (at ages of over 20 each) within the last year, had been cremated, and were placed in the coffin with her.
On the day Lise died, Willow the Ocicat joined the family, and helped ease the pain tremendously, but she went missing (presumed stolen) at the age of one.
Anne is survived by Squidget and Bailey.

Waiting for her on the other side are the powerful Ludwig, gentle Rimsky, confused Corsicov, battler Douglas, magical C'fa and perhaps even Willow.

Injected Chemicals:
Flourouracil
(5-FU, Adrucil)
Continuous Infusion into vein

Common Side FX:
• thinned or brittle hair
• headache
• weakness or achiness
• drying or darkening of the skin or nails
• sensitivity of skin to sunlight
• blistering skin or acne
• loss of appetite or weight
• tingling in the hands or feet
Less Common Side FX:
• mouth blistering
• fatigue
• painful urination or red urine
• black, tarry stools
• diarrhea
• stomach pain
• unusual bruising or bleeding
• swelling of the feet or legs
• cough
• fever
• sore throat
• nausea and vomiting
• rash
• yellowing of the skin or eyes
• joint pain

Epirubicin (Pharmorubicin)
(info coming)
Injected at the start of each Chemo treatment.

Cisplatin (platinum)
(info coming)
Injected at the start of each Chemo treatment.

Endoscopy
An exam of the esophagus and stomach using a thin, lighted tube called a gastroscope, which is passed through the mouth and esophagus to the stomach. The patient's throat is sprayed with a local anesthetic to reduce discomfort and gagging. Patients also may receive medicine to relax them. Through the gastroscope, the doctor can look directly at the inside of the stomach. If an abnormal area is found, the doctor can remove some tissue through the gastroscope. Another doctor, a pathologist, examines the tissue under a microscope to check for cancer cells. This procedure -- removing tissue and examining it under a microscope -- is called a biopsy. A biopsy is the only sure way to know whether cancer cells are present.

Staging
If the pathologist finds cancer cells in the tissue sample, the patient's doctor needs to know the stage, or extent, of the disease. Staging exams and tests help the doctor find out whether the cancer has spread and, if so, what parts of the body are affected. Because stomach cancer can spread to the liver, the pancreas, and other organs near the stomach as well as to the lungs, the doctor may order a CT (or CAT) scan, an ultrasound exam, or other tests to check these areas.
Staging may not be complete until after surgery. The surgeon removes nearby lymph nodes and may take samples of tissue from other areas in the abdomen. All of these samples are examined by a pathologist to check for cancer cells. Decisions about treatment after surgery depend on these findings.

Surgery is the most common treatment for stomach cancer. The operation is called gastrectomy. The surgeon removes part (subtotal or partial gastrectomy) or all (total gastrectomy) of the stomach, as well as some of the tissue around the stomach. After a subtotal gastrectomy, the doctor connects the remaining part of the stomach to the esophagus or the small intestine. After a total gastrectomy, the doctor connects the esophagus directly to the small intestine. Because cancer can spread through the lymphatic system, lymph nodes near the tumor are often removed during surgery so that the pathologist can check them for cancer cells. If cancer cells are in the lymph nodes, the disease may have spread to other parts of the body.

PICC line
(Peripherally Inserted Central Catheter)
Catheter (very flexible tube) put into vein in arm, threaded along vein resting in the magor vessel, Superior Vena Cava, just outside heart.

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Good Cancer related links:

Dealing with symptoms of secondary liver cancer

Cancer Society - Canterbury NZ

Secondary cancer in lymph nodes

Stomach Cancer

Abdominal Pain

Hepatoblastoma

Pain relief in cancer

Pain Relief: Chronic Cancer Pain

Cancer pain: Relief

Stomach Cancer

Google Groups : alt.support.cancer

Google Groups : alt.support.cancer

take cancer treatment?

Sentinel Node Mapping

cancergiggles.blog-city.com

Cancer : Stomach cancer

iBodyWise.com

Bone scan: Using nuclear medicine to find bone abnormalities

Hospice

Managing Care at Home

Esophageal cancer in 48 year old male

Cancer Pain Management

Caring For the Person, Not Just the Patient

The Rights of the Dying

Dying: Life Support: Partner

Life Support Issues Question List

Life Support Issues Previous Question List

Preparing For Approaching Death

Home Care Guide - Final Weeks of Life

Home Care Guide - Download the Guide

Types of painkillers

What Are The Risk Factors for Metastatic Cancer?

Drugs & Driving

Palliative Care & Symptom Management - Treating Pain

Treating Pressure Sores

Stages of a Pressure Sore

Pressure Sores

Guidelines for Patient Care of Epidural Analgesia

Long-Term Spinal Opioid Therapy in Terminally Ill Cancer Pain Patients

The National Pain Foundation: My Treatment

longterm placement of epidural morphine

Annals of Long-Term Care

Journal of Women's Health & Medicine

Limb Swelling

Hospice Patients Alliance - Signs of Approaching Death

care of intrathecal morphine