My experience with my mum, age 86. SENSITIVE

This site and many other sites, helped me so much when I was looking for information on how to care for my mother and what to expect. I thought of adding my experience to this reservoir in the hope that it is added inputs to those who seek help. This post is about my experience. Details of palliative care given are in a separate post under the relevant section of the discussion board.

Please reach out to me anytime for any further information.

BACKGROUND: Female, age 85 at time of diagnosis, liver profile done in Nov ’15 was normal

EARLY SYMPTOMS: Bloated stomach noticing increase in size. Itching. Full blood count, kidney profile and liver profile done late April. All normal except elevated counts on all elements of liver profle.

DIAGNOSIS: Entered hospital on 2nd May for consultation with GI. US scan confirmed ascites of stomach and severe jaundice which was cause of itching and the now present yellowing of skin. Paracentesis (ab tap) was done and 5 liters of fluid removed in two sessions. Albumin infusions were done after each tap. US scan also showed a mass near bile duct. Further CT scan ordered. CT scan done on 5th May. Report conclusion was distal CBD obstruction either due to stricture or an ampullary carcinoma. Along with elevated CA19-9 (>10,000) diagnosis was of Cholangiocarcinoma.

BILIARY STENT AND PROGNOSIS: The GI inserted an uncovered metal stent. He explained that a few days delay in inserting the stent would have been very bad as an infection was just starting in the backed up bile which had started flowing as the stent was inserted. He further explained that he chose the uncovered stent which typically has a shorter life span due to the nature and spread of the tumour he observed during the ERCP. He took decision on covered vs uncovered after observing the tumour. Based on her age, and general condition, he expected life span to be around 3 months

POST STENT: The jaundice was relieved instantly. The itching stopped almost immediately and the skin colour came back to normal. Blessedly the jaundice never came back confirming that the doctors decision in selection of stent was correct and there was no infiltration to the stent and further blockage of the bile duct.

FURTHER TREATMENT: The physician, GI and oncologist consulted all confirmed that no further treatment of the growth to be done and only palliative, symptomatic care be given to ensure quality of life. My mother’s written wishes were, that in case of illness towards end of life, she be not entered to hospital, no nasal feeding tubes and only sedatives and pain killers. She agreed to scans and stents only due to the extreme discomfort with stomach and the itching which OTC treatments were not helping with.
All my reading on this site and other blogs, medical sites, published literature confirmed the doctors decision; they pointed to fact that any form of chemo, radiation would have only prolonged life by months and not more and would have come with heavy price of great discomfort and vastly reduced quality of life.

ASCITES: The problem of ascites continued. We had to do ab tap at beginning on average every 8 days and around 4 liters each time. The doctors increased diuretic medication which slowed down the accumulation and eventually it halted after two months. The doctors also made a point of giving heavy albumin infusions each time an ab tap was done. On one visit end May, there was a particularly high accumulation which increased overnight at hospital and since tap was repeated within a day further albumin was given. The taps were always overnight visits due to need for observation post albumin infusion. In the last two visits the accumulation rate reduced, to less than 3 then 2 liters and after a two week gap the volume was less than the previous two visits which were after one week gaps. Thereafter one month before end of life, the accumulation of fluid seemingly ceased. The last visit to hospital, for my mum who hated hospital visits, was 7 weeks before her passing

PROGRESSION: All the signs and symptoms mentioned in the medical sites which talk of the disease happened. Sleepiness, fatigue which manifested in increasingly slow speech, effort to speak, effort to open eyelids. She would seemingly be asleep not responding to her childrens questions on ‘would you like to eat, would you like to drink, would you like to sit up’. But when her grandkids would speak, she would instantly open her eyes! Later the lack of interest in surroundings was evident. Not wanting to read newspapers, watch TV, not asking questions. There was decline in quantity of food taken, food was usually blended from beginning. Food intake stopped 10 days before her passing and liquid 3 days last few sips of water and juice was on 9th night. After about 6 weeks from diagnosis, there was agitation about inability to sleep and though extremely tired was not able to sleep. She was given Haldol for agitation and Clonazepam to help with sleep. Both worked extremely well to keep her sedated and calm to the end.

END STAGE: The last intake was on 9th night where meds were taken with juice. By this time meds were down to the sedative combination and antacid and gastritis medication. From day one she was on a cocktail of gastritis medication. They were domperidone at three times a day, omeprazole and an antacid syrup given half hour before meals. I strongly believe this combination was the reason that mum never experienced the nausea that I have seen mentioned as a symptom on every medical site and all patient and care giver blogs.
She was asleep all day on Wednesday with minimal responses. By end of Thursday we realized she was in semi conscious stage. We met with doctors only for advice on who to handle pain in case it arose and was given prescription for sub cutaneous morphine infusion. Thankfully we never had to use it. She was not moving, or moaning all day Thursday. On Friday afternoon I realized her hands and feet were feeling cool. However since she was given a wash at mid day was not sure. She was given a leg massage and light head massage which always helped her calm down and her breathing while deep was regular in same manner as it had been earlier in day. Her breathing became noticeably heavier on Thursday night. This was at 9pm. At 10 I noticed her breathing had suddenly become faster, and heavier, with gurgling noises. Her hands were much colder. She was lying on her side and her mouth had dropped open to that side and her eyes which had been tightly shut during the last few days were half open. These were all signs of end of life clinical symptoms that I had been reading up on. Moving her head slightly downwards eased the gurgling sound. Everything I read said that though the sounds are distressing, they are not causing discomfort to the patient and to check the facial expressions to verify it. That I found to be absolutely correct as her face was completely relaxed. She used to get a frown when she was uncomfortable even in her sleep, that was completely gone.
The family gathered around. I was stroking her head, but then we realized that it was stimulating and perhaps creating in her an inability to let go. I stopped and simply held her hand in mine. After a while the gurgling and throat noises completely stopped and it was simply heavy breathing. Eventually the breathing became softer and softer. Eventually it stopped at 11.45pm. We called the home visit medical service to confirm her passing. It was just 14 weeks after diagnosis.
After death, she looked so at peace. Her face looked so normal and just as if she was asleep. We think that the fact she had the quality of life to extent we could expect and lack of pain in the form of drugs given to extend life, or from the disease had a large part to play.
I am aware that not all cancer patients experience end in same manner. Hence am so so grateful to her karma, that meant the end was peaceful. There was no gasping, no thrashing. Just a slow slipping away. We are so thankful that she didn’t experience the type of pain that cancer usually brings. Her sister suffered so much with lung cancer and we were all dreading going through that again, but mercifully did not have to. We are grateful that the doctors were fully transparent and gave us the correct prognosis which meant we all had the correct time to come to terms with what we were going to face and were able to handle the situation with the strength and grace that she needed from us.

If anyone needs any further information on my experience please do send me a message and I will respond. I have a separate post on palliative care, to share our experience of steps taken in the care of our mother.

Wishing you all strength, courage and grace to face what you are going through.