Anyone else wish they could get off the Cancer train?

Yes, absolutely.

Our situation is that we lost my Father-in-law last April, he was diagnosed with pancreatic cancer in December 2017, and now my Mum has been diagnosed with stage IV upper tract urothelial cancer (think of it as the evil offspring of bladder and kidney cancer), with multiple liver mets. So far she's a four time survivor, having beaten breast cancer twice (different varieties) and lung cancer. The current one was first diagnosed back in 2015, and was removed with one kidney. We were told at the time that the op wasn't completely successful and the tissue taken was margin positive so it was likely to return. However she then had three clear years and was on her final cystoscopy when it was detected. 

It's like cancer won't leave her alone. We live 200 miles away, so it's a four hour drive to get there, and for the last two months I've managed two weekends at home with my kids. So far no treatment plan has been put together, just never ending tests, and we're seeing the oncologist on Friday. I'm juggling home life, work and spending days on the road going to appointments and just spending time with her when I can. 

The guilt over not being there is horrendous, even though it was her decision to stay where she is - years ago she looked at moving to be nearer to us (I moved for work reasons over 15 years ago), but then changed her mind and decided not to bother. So, I'm left juggling two lives - one of kids, school runs, work, days out, normal life - the other of waiting rooms, consultant appointments, scans, bloods, meds and waiting.

So yes, I'm with you all the way. I want to get off the cancer train, and watch it disappear into the distance, but I can't. It doesn't stop and there's no stations in sight. My Mum has now convinced me to take a holiday with the kids in a few weeks, but now that's turned into another reason to feel guilty. Guilty about looking forward to a break, when I know I need one, and my poor long-suffering wife who is still struggling to come to terms with losing her Dad last year needs one equally, and the kids really just want life to go back to normal, when Dad wasn't away two or three days every week. Equally guilty because my Mum can't take a break from it, she's living it 24hrs a day.

I'm angry with the bloody disease, worried about what's happening, terrified about what's round the next corner, living one day at a time. Most of all I'm numb. All emotions dead. 

I started this reply with something along the lines of "don't feel guilty because guilt implies blame, and we are all blameless as it's this bloody disease's fault" but that's just crap really and you deserve a better reply than that. All I can say is you aren't alone, we're all on the same crappy train here. One day at a time.

I totally understand how you feel. My husband was diagnosed with incurable prostate cancer 4years ago and I feel the life we had was stolen. It had been replaced by a life of hospital appointments, disturbed nights, radiotherapy, chemotherapy, injections, saying no to things we would like to do. I feel guilty for wanting to do normal stuff, I feel guilty for not seeing so much of friends and family. I just want all the stress and worry to dissappear. I want my life back and I feel guilty saying that when my husband is so poorly. He thinks I blame him but I certainly don't. I blame the b****y cancer!

You describe this hell perfectly. My dad has renal cancer now in bones (bones since this time last year)..every week the journey gets worse when I think it can’t. I’m 200 miles away and it’s torture..just spent 4 hours on motorways getting home now, whilst working full time, and having a family here as well. Its  relentless and  made worse by knowing it’ll will only break when the inevitable happens, and that’s also a terrible thought, thinking of us all in this position.  Best wishes 

I know exactly what you mean Mogginngton.

I'm back on the road tonight, seeing the boss Oncologist Friday, worried sick that the MDT have come to the decision that they can't offer any treatment as appointment got changed from "follow up" to seeing oncologist. 

All the best, one day at a time.

Thoughts to you and yours..my D was on daily chemo, side effects came so bad, he stopped for a break 10 weeks ago. We’d now got to the point of accepting since he’s now paralysed, that they won’t restart it. He’s had shingles, MRSA, Lymphoedema and now a chest infection, all in the last 4 weeks. This weekend for the first time my mum admitted she knew there would be no more treatment, so our focus shifted to getting him home as this is what he wants more than anything. The hospital arranged a hoist for the house, hospital bed to be out in dining room etc..and then on Monday, the consultant confirmed he couldn’t have more chemo, and told my dad he will never go home..a hoist will break his fragile skin, and cold cause more infection, and it takes 3 people to even turn him over.  This is exactly why I say every time I think it’s bad, it gets even worse.  I thought my dad would be devastated when I saw him first yesterday but I don’t know if he’s in denial, or just now losing concentration so not really thinking about it. 

My thoughts with you and yours. 

Am now stuffing my face with pizza after yet another drive. Oncologist tomorrow morning, crossing my fingers that they are still going ahead with chemo. Not optimistic.

Fingers crossed for you. Someone has to have some good news - I hope it’s you guys today. 

It’s good news of sorts. They’ve decided that it’s a go for chemo, first round starts on Tuesday.

now back home for the weekend, back on the road Tuesday morning.

Great news. Enjoy your weekend..time to give yourself a couple of days off x

Thanks Moggington 

How are things with you?

Had an early night here, now wide awake at 1 AM.

Crap..