This horrible disease

Hi , sorry to read about your poor mum - and your dad too. With so much going on no wonder you need to offload and glad you found us - no need to appologise we understand.

Wish there was something more I could offer but perhaps the best is just a massive virtual hug.

<<hugs>>

Steve

Thanks Steve,

Frustration getting the better of me I suppose.

Still no news on what's going on, another scan booked for Sunday (??) with consultant follow-up some time next week. Back to "wait and see" for another week.

Well we're now a bit clearer on how things are, and things are very worrying. My Mum had her appointment with the consultant surgeon who removed her kidney back in 2016 who told her that the cancer had returned, and had spread to her liver. No mention of the bladder lesion which was what prompted the investigation. I did ask what that was but they simply said that it was "small". 

Tomorrow we're seeing the Oncologist to be told what the options are, and everything feels very ominous. Even the letter which they've sent seems quite ominous, there's a line in it which asks that she doesn't attend this appointment on her own as there will be a lot of information to take in, which is something I've never seen before.

I'm probably being stereotypically British here, stiff upper lip and all that, hoping that she doesn't pick up on the fact that I'm worried sick. She just seems so tired, and very frail all of a sudden. She's a 4 time survivor and I keep reminding myself that, although this time it feels very different. But then I suppose it would as this is the first time anything has come back. Secondary liver cancer isn't good, I know that. I guess I'm more worried about how my Mum takes it if it is as bad as it feels.

Hi Chris, 

I'm a bit late to this thread, I'm so sorry about your news. That does sound serious, although best to wait and see at the appointment rather than fret now (impossible though that may be). I hope your Mum will take it well, my Mum died a few days ago of liver cancer and I used to tell her, if she died then I'd miss her loads and be really sad for a while but I would be fine. The main thing she was really worried about was her children, so that seemed to help. Having said that, this was way down the line from where you are at the moment - she was stage 3b at diagnosis in December and things just got worse and worse so we ended up having these kind of conversations. It's natural that you're worried sick and if you can find a way to share that with her, but also that you're not going to completely fall apart that might help perhaps?

Best

Rachel

Hi Rachel

Many thanks for your reply, and I am sorry to hear about your Mum. We're still waiting to hear what's next - appointment with Oncologist is on Monday. I'm still trying to look and act positive with Mum, even though I can't help but feel that it's going to be a very bad conversation on Monday. It doesn't seem to have sunk in with her that this is secondary liver cancer. She was originally diagnosed with high grade urothelial cancer (stage 2 n1 after surgery), and it's been confirmed that this has come back, which makes it stage 4. I'm worried that she doesn't seem to understand this as she seems to think that it's primary liver cancer rather than metastatic, and Monday's appointment will be when it sinks in. One day at a time...

Thanks

Chris

Hi Chris,

That sounds very stressful for you. In some ways it’s probably good that she thinks the situation is less critical than it may be. Stage 4 isn’t necessarily a death sentence anymore and primary liver is in many ways worse than secondary as it tends to be caught too late. You’re right to think the situation is worrying but the outcome may not be as terrible as you might be thinking. Let us know what happens on Monday :-)

Best

Rachel

Hi Rachel

Thanks for the reply, apologies it's been a pretty crap couple of days. So, we saw the oncologist on Monday, the situation is that it is confirmed as secondary liver cancer, originally it was upper tract urothelial. It's high grade, and there is one large (5cm) tumour and 5 small, all in the liver. They confirmed that it's not curable, the only option is to try and control using chemo (gemcitabine). The multi-disciplinary team are discussing her case today as there is some doubt as to whether her remaining kidney is up to dealing with the chemo so we should know more after that. The current plan is first chemo session next Friday. Mum has said that she wants to go ahead with chemo, especially as they did state that if left untreated then it will progress very quickly. So all in all it's pretty dire. I've now had to go back to work, but have put in a load of holiday requests as she wants to spend as much time with my kids as possible. They are starting to realise that something's up, they aren't used to me being away for a couple of days every week, am dreading having to tell them what's going on.

Chris

Hi Chris, 

Oh, I'm so sorry, that's really shit. I hope the chemo goes well, how's your Mum coping with the news? It sounds good to spend as much time together now as possible as a family, I'm sure your kids will cherish the memories of their Grandma in the future. How old are they?

Hang in there,

Rachel

Hi Thanks for the reply,

It's odd really. My Mum says she's now far less anxious after her results, which seems really weird but I'm starting to get my head around what she means. She wasn't sleeping well and was very on edge before we saw the consultant but now it's over she says she feels much calmer. When we saw the consultant there were floods of tears all round after we'd been told that it wasn't curable. It's been my first day back at work since Monday and it's been very productive in an non-work way. So far I've arranged for a two week visit to Mum's with kids in tow, which she's looking forward to. The only problem with that is that we've been told that Mum will lose her hair due to the chemo, and that will be when we have to tell the kids what's going on (to some extent anyway). They're 9 and 8 and we lost father-in-law last year (pancreatic), so they know what cancer is. We'll have to explain a bit more on what's going on. It's awful because while I was away my daughter asked my other half whether me being away a lot meant Nanny was going to die. A trip to my Mum's is a 4 hour drive from where we live, and while we do visit frequently, it's not normally 2 or 3 days a week so they know things aren't normal. God this really sucks.

Chris

Well, was just settling down ready for next week's planned chemo, and then......

My Mum's had a letter for a "follow up" appointment next Tuesday. Normally this wouldn't be any cause for concern, only we know the MDT met yesterday to discuss her case, and we were expecting appointment confirmation for her first chemo session (we'd been told next Friday). I have a horrible feeling that they're going to say no to the chemo, as they did have concerns over her kidney function.

This disease is shit, it really is.