Sudden decline

Hi all, 

This is my first time posting to any Macmillan forum. My day job is working at an ovarian cancer charity and moderating our forum, so it's strange to be posting from the 'other side'.

My dad's story - he was diagnosed out of the blue in early 2022 after routine blood tests for another condition resulted in a call from the GP whilst he was at work telling him to go directly to the hospital. He has been treated at the QE in Birmingham throughout, and we cannot fault his care at all. We have been so glad that he is being treated by absolute experts and have no sense that anything has been missed or delayed. Everyone there has been wonderful.

Lots of testing and a biopsy later, he was diagnosed with cholangiocarcinoma in the spring. They were confident it had been caught at an early stage, and he had a large resection surgery in Aug 22. They were pleased with how the surgery went, though acknowledged that they would have liked to take a slightly larger margin around the tumour, but this wasn't possible. A 'mop up' chemo (cisplatin + gemcitabine) commenced around Nov 22 through to Apr 23. He was also signed up to a clinical trial, which we were happy with as this meant more follow-up and more frequent scans. Very few side effects other than some sickness on the day and some hair thinning, but nothing major.

Cue lots of blood tests, CTs etc and we were riding a really good wave until this year. Jan 25 he was diagnosed with a recurrence of the cancer in a small, localised spot on his liver. Because it was so small and contained, they decided to treat with SABR radiotherapy, commencing in May. Scans, tests etc continued. Around Aug we noticed that he was developing more symptoms - fatigue, loss of appetite but largely continuing as normal. However, end of summer/Sept time he started to have short-lived episodes of fever on a strange 2-week cycle, almost like clockwork. He'd be really shivery with a high temp, but this would always resolve with paracetamol after a few hours. He had also been suffering with pain in his right shoulder for some time looking back, but this really escalated around this time too and became severe. Of course we reported all of this to his team, but they said just to keep an eye and bring him in if the fever didn't resolve.

Late Sept he was admitted for 3 days with this fever and they discovered he had an e-coli infection - treated with IV antibiotics, it resolved well and he felt much better. Early Oct a CT from late Aug was reported on - the tumour was stable but the doctor was concerned that his spleen seemed enlarged. Some of his liver blood markers were abnormal, but of course to be expected with liver cancer and no huge cause for concern at this time. An MRI was requested and this happened late Oct. 

This is where things have really escalated...6th Nov he goes in for his routine onc apt. The consultant took one look at him and said 'you look really unwell'. He had indeed become slightly jaundiced by this point and very fatigued, but we had felt reassured at the last apt that the cancer seemed under control. His liver markers were really poor and we were told that at this point in time chemo would not be an option as he wouldn't be able to tolerate it. He was admitted the following morning and has been in hospital since, 3 weeks tomorrow.

Early in the admission, a drain was fitted to drain bile build up and he immediately looked and felt a lot better. He has been eating and drinking well throughout, so that gives us some reassurance. However, one week in he contracted a UTI which became severe - it was really scary as he was completely confused and out of character. We knew something was wrong because he suddenly stopped using his phone to contact us. A CT ruled out brain metastases thank goodness. He was on 1:1 and IV antibiotics thankfully brought the infection under control. The team were initially talking about fitting a stent, but the decision was then to change the current drain to a longer-term one. Because of the UTI, this was delayed by about a week, which is of course understandable. His infection markers came right down and they kept him on the antibiotics just as a safety measure right up until the new drain was fitted.

Within the past week he has been very fatigued during the day but more lively to talk to at night, still eating and drinking well. Not confused but bizarrely and suddenly finding it really difficult to operate his phone (there's nothing wrong with it). This will make more sense shortly... It has been difficult for my mum and I to see him so exhausted. We've tried to encourage him to take a short walk or to engage with Netflix, a puzzle book etc but he isn't interested, which isn't entirely out of character anyway!

He finally had his drain change yesterday and we spoke to him last night - he was groggy but 'with it' and feeling ok. However, no word from him this morning. My mum went up to visit and he has become very confused again e.g. can't or won't follow instructions, not using the toilet, out of character. The doctor was surprised as she saw him last night and all seemed well. It seems this is either down to another infection following the surgery or, perhaps more worryingly, hepatic encephelopathy - this was a new one to me and having done some reading on it today I don't know whether I feel reassured that it's treatable, or concerned that it can come back and is a general symptom of liver failure. Some of the mild symptoms listed are things my mum and I have spotted for about a week - night time waking but tired in the day, problems with small hand movements (hence diffculty with his phone but no confusion). They are running tests to determine exactly what is going on, including a repeat of brain CT.

It's just so sad and disheartening. It felt like we might be taking a tiny step forward, especially to get him home in a few days, but now who knows. Meanwhile I feel less and less hopeful about the possibility of any further treatment and of course terrified about what that means. I should mention that molecular profiling was mentioned earlier in the year - the team held off in order to possibly open up ABC-10 trial later down the road. Essentially although the recurrence was a shock, it felt like there were loads of options in the armoury and that the cancer was really small and controlled. Now it feels the situation has completely changed in a matter of weeks.

Just sharing my experience here in case it resonates with anyone else. I'm not normally someone who easily opens up and am one of life's 'copers', but of course this is incredibly hard. Talking helps. 

Thanks all, and all best wishes to you on this road. x