clarem

Dear Krish,

I am so sorry to read that your dad has died. Your father will have known you were right beside him until the end. I sat with my sister when she passed in March and it was a very difficult passing to watch. I promise you that with time, the memory of those last few hours will fade a little.

Your mum and sister are both also in my thoughts.

Dear CM,

What touching words. Grief is hard to express and explain. Somehow, what you have put above does it perfectly.

Desiree, I just read your other post about the butterfly – keep that log like Lainy suggests.

Dear Heather,

I am so sorry to read that the surgery was halted – no wonder you feel devastated and harvest many questions. My sisters resection in December was halted after 2 hours due to her tumour being more advanced than imaging had shown. It’s devastating news to take in and I’m glad that you will be sitting own with your husbands doctor and going through it all.

Dig deep and use the forum for as much support as you need.

X

Moonpie,

Please do not doubt your own actions and advocacy. It is not the responsibility of relatives to drive, chase and push forward through this maze. That is firmly the responsibility of the medical profession. Sadly though, it is not always that straight forward and in reality it can take the actions of patients and relatives sometimes to forge ahead. You for one have had your foot on the gas from the beginning. The lost referral to Aintree? I seem to recall that was only picked up through your initiative and follow up. You are a great advocate for your mum.

You must all be getting to the end of your rope with this waiting – I remember it being an incredibly hard time- one of the hardest bits of the whole experience.

Aim for Thursday’s meeting with the consultant and go in focused. Be sure in your mind what you want answered, what you want to know and write it all down before you go in. I went with my sister and her husband to their meeting and we had 2 pages of A4 questions. We brainstormed the week before and wrote every question, big and small on that bit of paper. Some were very hard to even think about, let alone write on paper. Many were answered without us having to ask as the consultant went through the facts and options. Others we had to be direct with. I was very direct with my questions. The consultant was incredibly patent and dealt with every single one, going through the list with us, crossing the questions off as we dealt with them. If you can, make notes as well. It will help you remember the information when you want to go back over it later.

I would like to think that if your mum has CC, then the whole issue of surgery as an option has to be discussed at the appointment with Prof Lodge. If it’s not an option why not? Is it the extent of the tumour ruling it out? Is it her underlying health issues? If so, what are the risks if surgery went ahead. These are some of the questions that immediately come to my head that I would have on my bit of paper. Your mums case should also be discussed at a multi disciplinary team meeting to get several opinions on how your mums diagnosis should be managed. I thought that was standard in the UK for rarer cancers like this.

Hey Lainy,

coming to this late – I’m sorry. But I’m glad to see you’ve rallied and got the support you needed. What goes around comes around.

x

Hi Moonpie,

I’ve been wondering how your mum is and how things have progressed. I hadn’t got half way through this post when I started to realise that you still don’t have a diagnosis or plan of attack. To be honest, I am taken aback and expected your post to be about your mums plan and going forward from now.

I understand that diagnosis can be difficult and take some time but I am struggling with the 3 months to be honest. My experience of CC with my sister was limited and short lived but I’ll summarise the time line below for you as a comparison.

28th September woke up jaundiced
5th October ERCP
11th October GP arrived at her house to tell her the brushings were positive and she had CC.
18th October MRI
1st November meeting with consultant – told that surgery would be possible if her liver grew over a 4 week period
Week beginning 5th November she had external drains inserted and blood supply to her liver reduced to make the remnant liver part grow over next 4 weeks
17th December liver resection date

Her diagnosis and plan happened very quickly although I have to say at the time I was jumping up and down about how slow it was from getting her diagnosis to seeing the consultant and getting a definitive plan. It might all have been different if her brushings came back negative.

I don’t know Moonpie if it normally takes as long as 3 months but it does seem excessive to me.

Hi Jules,

I don’t know of any groups – but I’m pretty new to CC as I joined in December when my sister became ill so there may well be a group or two hidden away. http://www.ammf.org.uk/ would be the place to start I guess as Helen who runs the charity might is highly likely to know.

Gavin is a bit of a guru too on the UK front and he might have a bit more information on any UK based groups. I’m sure he’ll be along soon.

I’d be all up for a group but being in Scotland would have logistical challenges!