Cholangiocarcinoma timeline

This is a timeline of the progress of my wife's illness. It doesn't make for pleasant reading.

As a background, she had been complaining about fairly non-specific symptoms for many months, maybe for a year or two, such as feeling bloated, stomachache, joint aches and pains, also tiredness and lack of drive and concentration.

She had been to the doctors several times, as well as to see hospital specialists, they could find no specific cause for her symptoms. It got to the stage where she felt she was wasting their time, and/or that they thought she was mallingering in some way.

It they'd known her a little better, they would have known that she only ever complained when she was desperate.

I wrote this as a diary of events, knowing I would find it very difficult to remember details that I might well be asked about. There may be some minor errors, I sometimes had a lot of difficulty in bringing myself to remember a day's events and to write them down.

DayDateDayDescriptionIn Hospital
Saturday18 Feb 20171• Woke with jaundice.Out
Monday20 Feb 20173• Spoke with doctor on the phone, arranged appointment for the next day.Out
Tuesday21 Feb 20174• Doctor wants a consultant to see.Out
Friday3 Mar 201714• Sees consultant at the hospital.Out
Tuesday7 Mar 201718• CT scan, PTC arranged for Thursday - a procedure to probe through her side, down through her liver into the bile duct system, to put a stent into the blocked bile duct(s).Out
Thursday9 Mar 201720• PTC failed due to swollen liver. External drain put in place to relieve pressure in the bile ducts as well as reduce the bile getting into her bloodstream. Admission into hospital.In
Tuesday14 Mar 201725• PTC, stents inserted, external drain removed. Diagnosis: Terminal cholangiocarcinoma.In
Sunday19 Mar 201730• Birthday, 72.In
Friday24 Mar 201735• Severe infection, temperature 40.7 (105), rigour. "I never want to go through that again, just let me go."In
Friday31 Mar 201742• Comes home. (All home visits require a helper for me due to car pick-up and parking, could be any of her sister, our son, our daughter, or anyone else available. My thanks to all of them.)
• She has an infusion syringe pump with a drug cocktail, 5 regular oral drugs, some extra orals plus extra intravenous if necessary.
Saturday1 Apr 201743• A good day, eating and drinking well.Out
Sunday2 Apr 201744• 00:01 Rigour starts again.
• Give oral paracetamol; Call 111; Get operator to ask a doctor to ring back; Doctor decides visit required; On-call doctor visits; Calls ambulance; 04:15 back in hospital A&E; drips and intravenous antibiotics administered.
• Temperature controlled, by 12:00 back to near normal. Doesn't want to eat or drink particularly, so drip continued.
• Missed grandchildren's birthday today.
Out In
Monday3 Apr 201745• Two more rigour events during the morning, reasonably controlled by lunchtime, some difficulty eating and drinking.
• Recovered somewhat during the day, very tired.
Wednesday5 Apr 201747• Dr Lawson says not all the liver is draining, some is pooling and getting infected. New course of a different antibiotic. If to return home, will have to have intravenous antibiotic when at home, administered by a specialist home-visiting nurse (on top of the district nurse to change her infusion pump syringe.In
Friday7 Apr 201749• A temperature this morning, 37.3. A different antibiotic, won't be able to administer this one at home. Doctor will ring her sister to explain the medical details.In
Monday10 Apr 201752• Discussion with Dr Lawson, options: drain (temporary relief, high chance of infection); chemotherapy, but now too weak; continue antibiotics until they don't work; stop medical treatment and move to Macmillan ward.
• Little chance of coming home with any of these because of the high chance of rigour.
Tuesday11 Apr 201753• Moved to Nightingale Macmillan ward. Assessed by Dr Imran Khan.In
Thursday13 Apr 201755• Wheeled to a car by physiotherapist to see if she can get in and out for possible trip(s) out over the Easter weekend. (Limited hours away, must be back in by 17:00 at the absolute latest to have syringe changed.)In
Friday14 Apr 201756• Out just after 12:00, home for lunch (cooked by daughter), then to daughter's to see son-in-law and grandchildren, back to hospital for 16:00 (all these return times vary according to medical requirements).In
Saturday15 Apr 201757• Out just after 12:00, home for lunch (cooked by me) with son. Walked round front and back gardens. Back to hospital by 16:00.Out In
Sunday16 Apr 201758• Couldn't come to son-in-law's birthday buffet, too weak.In
Monday17 Apr 201759• Feeling a bit better. Phoned me organising my cooking lunch again, expecting nephew and his partner to visit, wants to be at home when they see her. All goes well, but she did have to take some extra morphine while at home.Out In
Wednesday19 Apr 201761• Bad morning, tired, pale, blowing nose, nasty flemmy. Picked up a little in the afternoon. Doctor (Venkata Chaitanya, "Ven"') came in, spoke about possibly going home in a few days. Later saw son's new car, had a ride in it round the hospital perimeter road.In
Thursday20 Apr 201762• Sister came early, helped her have a shower. Home for lunch, ate well. Back for teatime. Told that she might come home Tuesday 25th April.Out In
Saturday22 Apr 201764• Not too good, but ok. Home for lunch, fish and chips. My old boss and his wife called round, then later daughter and grandchildren. Son helped me take her back to the hospital.Out In
Sunday23 Apr 201765• Cooked lunch for her (plus our son and her brother), BUT she'd had a temperature overnight we were told when we got there (a nurse had rung home, but after we'd left). When we got there she was fast asleep, so we left her, ate our lunch without her. She felt a bit better later on, ate a bit of a sandwich and some jelly.In
Monday24 Apr 201766• Feeling much better, showered herself.
• Doctors came in around 10:45, stayed around 25 minutes. Asked many questions, maybe inferring the possibility of no longer having antibiotics if she gets another temperature spike. In any case, can't go home as planned tomorrow. If/when she does go home, there must be a plan as to what to do if she does get a temperature spike at home.
• The rest of her day was ok.
Tuesday25 Apr 201767• Had another temperature spike last night. Given intravenous paracetamol and antibiotic. Unfortunately, the antibiotic leaked, so not effective. Very poorly during the morning.
• Doctor came in (Amy), talked to us about what she wanted, we said to keep her comfortable. Amy said she'd not been on the ward long, would talk to the team about going home and so on.
Wednesday26 Apr 201768• Well enough to come home for lunch. On return to the hospital, she was put onto a second intravenous antibiotic. Unfortunately, because of the timing of administration, this will limit available time to come home, so unlikely for a few days. (But, things change ...)Out In
Thursday27 Apr 201769• Looking better than yesterday. Couldn't come home for lunch because blood test didn't get done until 13:30-odd, but came home afterwards.
• Had tea, back for 18:00 intravenous antibiotic.
• Later on, she was told they would be barrier-nursing her ??? .
Out In
Friday28 Apr 201770• Apparently now has barrier nursing, no explanation at the moment. (Maybe her blood cultures showed up something nasty???) Home after lunch for the afternoon, but tireder than yesterday.Out In
Saturday29 Apr 201771• Home for lunch, daughter and grandchildren visited us during the afternoon at home. Back in hospital by 17:00.Out In
Sunday30 Apr 201772• Home for lunch.Out In
Monday1 May 201773• Home for lunch.Out In
Tuesday2 May 201774• Home for lunch.Out In
Wednesday3 May 201775• Another temperature spike. Was recovering on just paracetamol, also heart rate not raised, so possibly due directly to the cancer, not infection. Talked with Dr (Ven)
Thursday4 May 201776• Had a CT scan in the afternoon. A doctor (Amy?) later said it showed potential blocking of the inferior vena cava, so would need injection(s) to thin the blood. Last time this was tried, she started to suffer nose bleeds.In
Friday5 May 201777• Long discussion with Ven about the results of the CT scan, treatment and prognosis. In summary, she has one large abscess and several small ones and the scan showed a large clot in the inferior vena cava that feeds venous blood to the heart from the lower part of the body.
• Currently she's on a course of antibiotics, plus injections of a blood thinner – a much heavier dose than she's been on before.
• Ven's prognosis is that she has weeks to live rather than days or months.
• He also asked whether she wanted to die in hospital or at home. Between us, we think we prefer the hospital, but nothing is as yet final.
• We will talk with Ven again on Monday.
Saturday6 May 201778• Took her to the hospital restaurant to meet up with daughter and grandchildren. (We think it's inappropriate for them to come to her room because of the barrier nursing.)
• Spent an hour or so, pleasant family time.
Sunday7 May 201779• Started the day feeling “couldn't be bothered”, but eventually picked up. Went to daughter's for lunch. After lunch, home for an hour or so. Looked through some stuff, cried a little. Returned to hospital for 15:30, to find they'd missed out on a blood test before she left. Had a lot of trouble getting blood out and next antibiotic in due to veins collapsing. Will need further dose, probably well past midnight.In
Monday8 May 201780• Sister came because we were to have another consultation with Ven. Decided to stop antibiotics, see how the next temperature spike is managed without. May go home in a couple of days.

• Came home for lunch with her brother as well.
• Afternoon cut short by her infusion pump driver beeping, said it was nearly empty, so took her back early. The explanation is that they changed the tube, so that volume was effectively lost. There will be a delay before the next syringe is available, so she may need some extra oral morphine.
Out In
Tuesday9 May 201781• About 7:40, fell out of bed. She was reaching for her slippers, just fell. Called for help (buzzer out of reach), help came straight away. Nose bleed. Blood pressure low, temperature ok. Doctor checks her 8:15, obs set up every half hour, CT scan set up. Meanwhile, had a small breakfast.
• Late morning, she asked daughter to come in to talk to her, daughter walked out of the middle of a training course at work to go to her. CT scan performed.
• Obs reduced to every hour. Ate lunch ok.
• CT scan results came in, nothing said, so presumably nothing found.
Wednesday10 May 201782• Told she can go home overnight. Given all necessary medication, but must come in at 18:00 for syringe change. Then, return by 18:00 tomorrow.
• Daughter was coming in to bring her lunch. This changes to helping take her home (about 13:00). We ring her sister to see if she can come for overnight support.
• Lunch is fish and chips, she is too hungry to wait for anything to be cooked (steroids?). Walks round garden with daughter. About 15:00, syringe driver alarms.
• Daughter rings the hopital, tell her to turn it off, and to take a dose of Oromorph (liquid morphine) instead. Daughter goes home shortly after sister arrives.
• Tea for me is a soft sandwich (I can't risk any hard bits on my gum due to an ongoing inplant); for her and her sister it's the lunch daughter had prepared.
• Back to hospital for 18:00 and syringe (and battery) replacement, then home again.
Out In Out
Thursday11 May 201783• Had a reasonable night, up around 9:15, showered (with sister's help).
• Taken shopping (using a wheelchair).
• Syringe driver stopped at around 16:00, took some morphine to compensate.
• Back to the hospital for 18:00.
• Greeted by a nurse saying that, if everything was in place, she would be discharged tomorrow. Something of a surprise.
• If she gets a temperature spike, we are to call 111. If she is admitted to a ward, we are to say she is known to the Macmillan ward, she will then go on the list for readmission to Macmillan when a room is available.
Out In
Friday12 May 201784• Discharged. Took a while from Doctor's visit to finally leaving (11:30 to 16:00), but got home, with a lot of drugs (some for self medication, some to be injected by a district nurse including the daily change of the infusion syringe.
Saturday13 May 201785• Slow to get going in the morning, had to take two lots of oral morphine during the day.
• Had a houseful - sister, sister's husband, son, daughter.
• District nurse came around 15:15, a little later than the syringe driver finished, but no problem.
• Picked up late afternoon.
Sunday14 May 201786• Had a good night's sleep, still Fast asleep at 8:00. Woke around 8:30, experiencing temperature spike, feeling cold, shaking, though not as severe as some she's had. Feeling very weak, even with help couldn't get to the toilet, had a bit of an accident that took some clearing up.
• Luckily her sister is staying with us, she cleaned things up while I manned the washing machine.
• Paracetamol and naproxen taken as soon as she could have them to try to control her temperature, also some oral morphine. She couldn't sit up, had to drink water through a straw. Gradually over the morning her temperature came down, but left her very weak.
• About 12:45 she took her next dose of paracetamol. Had some more oral morphine. Around 13:00 she decided she should come downstairs, but had to sit down part way and at the bottom, before making it to her recliner.
• Did eat a little lunch with us at the table, then back to her chair. Fell asleep.
• Awoke after a bit, had some tea to drink.
• District nurse came, syringe changed 14:50. Said she'd make sure our GP knows, should be in contact tomorrow (Monday).
Monday15 May 201787• Much better today. We checked with our GP to see if he was aware of her, but they are stymied by the computer scam, so no contact can be made at the moment.
• Had a good day up until around 19:00, thought she was having another temperature spike. Felt cold, started to shake, but she wasn't hot to touch. Put the heating on, got her some warm soup, started to feel a little better.
• Went to bed earlier than usual, feeling unwell and bloated.
Tuesday16 May 201788• Awoke relatively early, felt quite good.
• I went into town, bought a wheelchair. To test it out we drove to a local farm shop (very nice food, very expensive), pushed her round, bought food for tea, so that was a success.
Wednesday17 May 201789• Good night's sleep, but 8:10 had another temperature spike, quite bad. Lasted about 35 minutes, then very weak (almost couldn't get to the bathroom even with two of us supporting/carrying her). A lot of pain in her tummy and right side back and arm, most probably referred pain from her liver. Gave her two doses of oral morphine as well as all her other medication, but she had a lot of trouble drinking water to wash the tablets down even with a straw (too weak to sit up to drink).
• District nurse came a little after 12, gave her a morphine injection. Will order a commode for us. Also said that if we were to have carers in, she would have to have a hospital bed, this could be arranged.
• Doctor came on what is to be a regular weekly visit, decided to up the morphine content of her syringes.
• I put off one or two people who were wanting to visit.
• 18:30 in a lot of pain, rang for a district nurse to inject pain killer. Administered about 19:00.
• 19:30 another temperature spike, not as severe, but still nasty. 20:15 settled down.
• Around 21:00 got very hot, and more pain. Rang for a nurse, who put in a cannula through which she gave another morphine injection and a muscle relaxant.
• Call-out again around 23:00, nurse came around 01:00 in the morning.
Thursday18 May 201790• Slept some, but pain never went away. Had nurses out two more times during the night.
• Doctor came out at lunchtime. To cut a long session short, he thinks she isn't absorbing the oral morphine, such a high intake would have been fatal. So he's increasing the syringe morphine content in line with the injections she's been having, also adding a muscle relaxant.
• He did say that, in his opinion, she only has a very few days left, she is most unlikely to survive the weekend. He also suggested leaving her at home, it will be much more peaceful than in an acute ward in hospital, there being no beds available in the Macmillan ward. He also said there was a very good chance that the trauma of moving her and the ambulance trip might mean she would die in the ambulance.
• Her sister and our son and daughter are going to stay with us. We are having community carers in to help look after her, in particular turning her to ensure no sores develop, also a sitter at night so that we can all get some sleep (at least, that's the theory).
Friday19 May 201791• Overnight, fairly settled. The sitter sat with her, mostly holding her hand. Occasionally one of us would wander in to see her, seemed peaceful (except her breathing, she can't swallow, there is an inevitable buildup of saliva in her throat - if it gets bad, she can have an injection to reduce it).
• Early morning, she got some spasmodic pain that caused her some distress. She can't talk, but did manage to yelp "It hurts". Trouble is, we don't know where, could have been her back or her leg that she was managing to move.
• I called 111 to get a nurse to come to give her an injection (it being before the normal District Nurse time). For once, the system failed, no one came. Didn't ring again, she eventually settled.
• Around 9:30, the first carers came to wash her, change her nightie and the bedsheets. They were very good, said she cooperated with them, so this went well. No sign of any bed sores (probably helped by her having a good appetite up until a couple of days ago, so there is still flesh on her bones).
• She slept after they went, obviously took a lot out of her. They are coming four times a day, even if only to check up on her.
• Doctor came during carers' second visit (they were just checking up on her). He had a look at her, was satisfied with her medication, we talked about the spasmodic pain and her breathing, things are probably as good as they can be.
• On his way out, I asked about what we do when she finally goes, basically ring him if in normal hours, or 111 if out of hours. In either case, a doctor will come out to sign appropriate paperwork. After this, we call a funeral director to arrange for her to be taken away.
• I phoned a funeral director that we knew of, they'll sort everything.
Saturday20 May 201792• Breathing became more difficult during the early morning. She seemed very sensitive to being touched. Eyes shut. Still think she knew we were there, but we don't know how uncomfortable she might have been.
• There was no sitter available tonight, so we were taking it in turns to sit with her, her sister until midnight, our daughter until 02:00, my turn was from 02:00 to 06:00.
• While I was with her, her breathing became more difficult, gurgling in her throat and beginning to gasp. Her sister came back in to our room about 04:00, probably not sleeping and heard the breathing. We decided to call our son from his home, and daughter from downstairs where she was camping in the living room.
• The breathing got worse, then she opened her eyes wide, just staring. We put ourselves in her line of sight one by one, talking to her. No detectable response, but who knows?
• At 04:57, her eyes semi-closed and her breathing stopped. Her sister fully closed her eyes.
• We all hugged and cried, then each of us spent a few minutes alone with her to say our goodbyes.
• We've been married 47 years and 8 months to the day.
• I subsequently discovered that, later that evening, daughter had sent her a text message.
Thursday1st June 2017104• Her funeral.
• She had told us what she wanted for a ceremony; simple, quiet, no weeping and wailing. We gave her that as best we could, though there was plenty of weeping.
• She had told us what music she wanted, she asked her sister's husband to deliver a eulogy, though left it to us what was in it. The eulogy was a tribute to her, told of her qualities of kindness, quiet determination, a loving and caring sister, wife, mother and grandmother. There were her skills of providing meals for two people or two hundred, her extraordinary needlework that she did, not to show, simply to achieve a superb quality. We put some of her work on display at home after the funeral. Those who weren't familiar with what she did were amazed at her work.
• Her daughter and sister (with a just little help from the menfolk) put on a buffet in her style, went down very well. A fitting tribute in its own way.
• There were people that I'd not seen before that had known her. All praised her in one way or another. Even a nurse from the hospital ward where she had spent much of her last weeks said all the nurses there loved her, would spend as much time as they could talking to her.
• I used our television for a slide show of pictures that included her (there were very few of just her, she hated her photograph being taken), I was in tears telling of the various scenes, knowing nothing could ever be repeated.
• Her ashes I will spread over her garden that she loved so much.
• The last paragraph from her eulogy:
• "[She] will live forever in our memories. She dedicated her life to others and positively touched so many lives. She leaves us a legacy of gentleness, unassuming quiet dignity, thoughtfulness, compassion, diligence and humour. But greatest of all, she has left us with an enduring example of what it means to be a caring and loving human being."
Monday12 June 2017115• We buried her ashes under the Acer that was the first garden shrub we ever bought, and which has followed us with every move of house. Above the ashes we've put some Sisyrinchium bellum, which she liked, particularly because of their colour.
• The acer:

• The blue-eyed grass:
Saturday24 June 2017127• Five weeks on.
• This is a posting I did on a motorcyclng web site forum.

• June 2004 - Photographing lilies: