Topic: update on mum-having time to think and reflect
got back off from my holiday and back home with my parents for a couple of days before heading back for work, holiday was lovely and very relaxing and gave me time to reflect on the busy stressful few weeks we have had.
An update on mums proceudre and results so far: mum had her appointment today with the dr at Aintree hospital following last weeks ERCP.
the meeting started off with explaining what they did. we were all under the impression that the procedure mum had done last week was the spyglass, it turned out that it was another ERCP where they replaced the stent as the first one was very blocked and not the right size for the stricture according to Aintree, so they replaced it with a wider and longer one and said that this new one will make mum feel a lot better and it has which is great.
the dr then said that brushings and a biopsy were taken, I queried whether they did a bowel biopsy and they didn't, mum now thinks that she got a bit confused when they were talking to her and now understands that the samples were done from the bile duct, im guessing if you are layed on your side and having sedation and the dr talking to you-its easy to get things a bit muddled!!
the brushings and the biopsy came back inconclusive, however they said that the stricture was long, irregularly shaped shouldered at the margins which indicate malingnancy, they said that they are not ruling out cc but mum has had two inconclusive samplings done now, some of her blood tumour makrers came back normal ca19-9 I think it called but another CEA tumour makrer came back abnormal and they want to repeat these again. the dr said that not everyone expresses the tumour markers so they are not reliable but they can help with the overall picture.
the dr then explained that he wants to get mum in to have the spyglass and also the endoscopic ultrasound, he said we would get an appointment date within 1 week, we got home from Aintree and there was an answerphone message with an appointment for 16th august, she will have to go in for a couple od days as she will be having a general anaesthetic and we are travelling a fair distance.
Aintree have been brilliant with mum so far, they are being very thorough, very clear about what they are doing but also neutral and not jumping to conclusions too quickly. the local hospital oncologist offered a plan of going home for some months and having a CT scan, at that point we didn't agree with that and asked for further tests and opinions, thankfully Aintree have reacted quickly to this and got mum sorted with her tests in a reasonable time frame.
The last few weeks I feel I have just been blocking off the emotional impact of all this and just focussing on all the technical.sciency stuff as a way of coping I think , it hit me today after the meeting and also having time away from my parents to think things through, that ive been lso been quite angry at my dad for his optimisim and the way he is shielding information from mum and thinking quite negatively about it all,
I got quite annoyed at dad after the meeting as he kept saying to mum its all very positive -I don't think you've got cc, I think its just been a bad infection and mum was agreeing with him and starting to say I don't know why I need these extra tests,
My dad and I ended up having an argument, I got upset and told him about the research that ive done- about the tests/diagnosis treatment etc, showed him the information in the MDT reports that we had received and explained about their comments in them stating that the stricture is highly suspicious of malingnacny. told him about how hard I have found these last few weeks, how i think im coping with this by doing this research, mum came in and saw us both upset and it was at that point that we all talked together, we talked about a lot of things and most importantly talked about how I was feeling, mum started to open up a lot as well, also dad, it felt good to talk about how we are feeling and knowing that we are all on the same page now with being realistic about what the next lot of tests may show and what may happen. it also reminded me that with adversity comes positivity and I am thankful and pray everyday that as a family we are facing this together and supporting eachother.