Hello Mandy,

 Sorry to hear about your Mum. I find myself in a similar situation, however it is my husband in his early fifties who has stage 4 lung cancer. The one piece of advice which I was given is to take each day at a time - very hard for someone who likes to plan way ahead. However I do find it does help not to think/dwell on the future too much. Another good piece of advice I was given was not to google symptoms, treatment , prognosis - only take advice from a reliable source, medical staff, cancer research , Macmillan etc. 

I like you have been emotional and struggling to cope at times ( most of the time if I'm being honest). Do you have a palliative care nurse involved yet ? As ours has been a godsend .She is our go to person offering advice and support for the whole family, telling us there is support out there we just need to ask . She has referred me for counselling which I hope will help and also enrolled me in a carers group at our local hospice. 

One thing I find helps me when I'm having a bad day is to get out for a walk or go to the gym. I've also enrolled myself and the kids for a half marathon next year to give us something to do together and something other than their Dads illness to focus on.

I hope this has been of some help to you, sorry if I have waffled on. Take care X

Hi Mandy, it is a terrible disease and lifewrecking for anyone hit by it (directly or indirectly). Anyway.. that is how I currently experience a similar situation with my mum with lungcancer.

My take on any obstacle or situation is handling it rationaly and prevent emotions to become too much part of the decision making. I want the best for my mother like anyone else, but only crying with or for her will not make her struggle any easier or better. On the other hand crying can relieve stress so don't fight it if it helps. 

Even always being there for her might not be in her best interest. I am struggling with this as well. Should you spend the most time trying to look for the best treatment or spend the remaining time with her. Focus on survival, quality of life or just being together as long as you can?

Not sure but I hate to see my mother suffer, I would rather have one full month with her in 'good health' than seeing her in pain for 6-12 months going from treatment to treatment.

Sorry, not really able to assist and hope you are coping better than I am, take care.

holguy

Hello! Thank you so much for your reply.

I am definitely going to start thinking one day at a time. Because today is good. Today is a blessing. I don't want to waste the next however long worrying about what will happen.

At the moment I feel i have stablised a little after the diagnosis. My mum is doing ok and i am being as positive as i can whilst also confronting the subject and we have had some good talks.

I think I will feel better when we have a more direct diagnosis - i noticed mums letters literally just refer to "tumours on her lung" they don't mention that it would now be classified as stage IV or advanced bladder cancer etc - i wonder if this is normal?  we had been waiting for the oncologist to get in touch as the doctor said chemo shoudl be an option, but unfortunately we have just received another appointment to see the doctor in 2 weeks instead which is worrying me. there also doesn't seem to be any urgency to get things moving - surely chemo asap is the best thing?

Anyway - apologies as i am waffling now - its funny when all the thoughts and questions come flooding out your head at every opportunity. I hope you are doing ok. Always here if you want to chat or vent! x

It sure is! and I have had the same thoughts as you. For me losing her is one element of a big jigsaw, the other parts being just what the run up to losing her will be like and how can I make it as easy as possible. I live away from my parents, but for the last two years i have travelled down and stayed with them every other weekend - and will now go down every weekend - which in itself is a testing and tiring element of this journey.

I hope you are doing ok - no one really understands what its like to have this in your head every day, from the minute you wake up until when you go to sleep. I feel like I am in some kind of limbo. then occaissionaly someone will tell you something like "oh i know someone who was given months to live and they ended up living for years" and a little part of you gets excited and thinks "oh just maybe..." but then realism hits and you know that this isnt likely.

Take care & do keep in touch on your journey!

Mandy

Indeed not a lot of room for other thoughts than this. I am thinking about starting meditation twice a day the next few weeks and hope to be able to improve my ability to redirect thoughts that drain energy from me. 

Doing more sports, walking or biking like [@Fogtyne]‍ suggested is certainly on my list as well. You need to take care of yourself before you can take care for someone else. 

Will know the results from the scan and longtissue beginning next week but we have been warned to prepare for the worst. Initial scans showed multiple spots (pretty large) on hard to treat places, her health isn't good to begin with so I am pretty pessimistic (or realistic)

Talk to you later. 

holguy

Hi Mandy,

Sorry for your news. My mum had Liver cancer for about 18 months before she unfortunatly passed away one month ago.

We had many different consultations and letters. My mum's was a non curable type and we new this from the diagnosis April 2016, so they could only try and control it. My mum tried different chemos with mixed degrees of success but this varies case by case. What happened in our case is they give you an option of chemo, try it out, if it works stick with it, if not they change it for another type of chemo. There are of course other options to consider depending on the type primary or secondary.

Eventually they will say that's it no more chemo can be tried (hopefully not in your case) and there is nothing else they can do. That's when you know it's advanced. You can also tell the decline as we did (if this does actually happen)

They don't move quickly doctors, well atleast in our case they didn't. Not in a negative way the care was good but they schedule doctor's appointments for 2 weeks later. You have the chemo then you have a scan to check progress and you can be waiting a month + for scan results.

Your doing the right thing living in the moment and taking it day by day. You can read what you want online but every case is different and what you read will never be a true reflection for your particular case.

D x

Thank you so much D I take great comfort from your message and I am so so sorry to hear about your mum.

I think that the time in between appointments feels never ending but I think that's something I just need to get used to.  Our next appointment is next Friday - but it's with the same doctor we just saw 2 weeks ago (we were awaiting an appointment with the oncologist) so yet again your mind starts worrying what on earth they have to tell us now. THe only thing mum has had since is the usual blood test? 

I really hope we have a year left with her - so weird to say that out loud but you know what I mean. So many people are telling me bladder cancer is an aggressive cancer and that's what keeps bringing me back to thinking we might not have that long :( 

I want to sort my own head out so that I can cope with what's to come.  Do you mind me asking how you found  the last year? Did you get any support? 

Thanks for reaching out 

Mandy