Topic: update on mum-having time to think and reflect

hello all

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.

Re: update on mum-having time to think and reflect

Oh Moonpie, what a splendid meeting you had as so much good came out of it. I also extremely happy for you that you have found the place that Mum belongs, a big yea for that. Now that you and your parents laid it all out on the table life will not have that kind of stress anymore. Good work! Bottom line is like you say, working together and I always believe the patient should know and understand what is going on. Good report all the way around and will have everything crossed for August 16th. Now, take care of yourself. Thank you so much for this good update!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: update on mum-having time to think and reflect

Hi moonpie,

Good to hear from you.  I am glad that aintree are at the helm now.  It will hopefully take some of the pressure off you if you at least have confidence in the medical team going forward. 

Waiting is incredibly hard and it's not surprising all those emotions surfaced.  But some good has come from it.  I so admire you for your positivity.

Clare

In the stars now . . . .

Re: update on mum-having time to think and reflect

Hi Moonpie,

Good to hear from you again and yes, a holiday would have been just the ticket to help deal with all of the stress of the last few weeks! Glad that you had a good one. Thanks for the update on how things are with your mum and I am very happy to hear you say that you are happy with how things are going at Aintree so far. And, that is good that they have fitted the right size of stent now, lets hope that that one does it's job right.

From what you have told us it sounds to me like Aintree are very much on the ball here and are doing everything in the right manner and way. And it sums it up really when you say that you are all happy with how the treatment is going so far.

As to everything emotional that you spoke of, we so know how all of that feels to go through and that is good that you all talked and opened up to each other. Sounds to me like everything had been building up and glad that it has all come out now through talking to each other. Onwards and upwards from here!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: update on mum-having time to think and reflect

Hi Moonpie,
Welcome back.  I'm glad to hear that you were able to enjoy some time for yourself to reset, rejuvinate and to think things more cleary.  I think sometimes when we are in so deep, we can't really be effective.  This time away fueled your courage to have a heart-to heart talk with your parents.  I glad that happened for all of you.  Now that you are all on the same page, you can begin to make decisions for the best interest of your mom. 
About you dad, I wonder if being overly positive was his way to cope with this terrible thing with your mom.  He may not intended to be deceiving and dishonest but maybe perhaps he is so terrified.  Anyway, it sounds like your mom is in hands of great care.  I wish the best results and outcome from her treatments.

Thinking of you,

Jeeyoung

Re: update on mum-having time to think and reflect

Again  thankyou everyone for ypur kind and very encouraging posts. It really helps to know there is such a fantastic resource wheto come to. I

Whilst i will never really accept what is happening i feel slowly that i am living abd adapting to it. It is painful to have to think about the future abd the course it may take i have got to carry on supporting my family and having fun as a family. This week with my parents has shown me that we all have the syrength to get thrpugh whatver is ahead

At the same time i have been dping a lot of research on the matter as i fl that knowledge is the key with all this and making sure we understand the what abd the why .

I have managed to get hold of mums mdt report from her local hospital and short reports from aintree and have printed off journals to help my understanding.