It’s suddenly getting real

Hello -  I am self confessed mess. I see your words 'terrified,  alarming, facing reality' this is a frightening journey.  I am in a boat where I dont know if my partner has 2 days, 2 weeks but unlikely 2 months - the suspense, anticipation, helplessness and anxiety is huge.  Holding on to doing everyday things can take every ounce of energy.   I have to make sure that I take stock myself and give myself time to step away from him, his cancer and take time for restoring myself to be able to not make it worse.   

And on the other hand, me and my partner have lived a year of intensity and care and love that I would not swap for the world.  So beside the fear, there is love, a chance to really see what is important. It put a  broom up my arse for not leaving anything to the future and as he only is 60 we are living 10 years in 2 months.  I have and try to tell myself not to let the fear of the loss cheat me of the time we will have together, that might lead to regret - hard to live up to as the suspense and looming death is very powerful and frightening. 

Welcome to a forum where it is ok to say and think the un-sayable and thinkable

Thank you for taking the time to respond to me. You are right, we have to try and live life each day as it comes. My husband is only 44. 

Thank you for your comforting words and I wish you all the very best x

Hi messymum

im 42 and my husband is 49. He has stage 4 kidney cancer that has spread to his lymph nodes. We have a daughter who just turned 11. He is incurable, but not yet terminal. I was saying to Nelliej the other day, it’s like the sword of Damocles, an ever present blade hanging over our heads, waiting to fall. How to be happy, or “make memories” or “just enjoy the time you have” in these circumstances? I don’t know, I have no answer to that.

But I do know that the pressure I and others have been putting myself under to somehow do all this “right” (I blame all the bucket list movies and memes and this crazy culture of glamorising and using difficulty as “inspiration”) does not help. That there is no right way. No perfect moments, no fade away to credits rolling and being able to cheerfully get on with the rest of your day.

i am by turns desperate, calm, tormented, relaxed, despairing and unconcerned. All of these things, much of the time. 

I wish you the same thing I wish for myself, the strength to endure, and the will to do better than just survive xxx

Too young,  and sorry for the time you are being cheated of. I try not to fall into the things are fair / unfair but it is really difficult sometimes. Having futures taken away must be hard, particularly when you have young ones. 

Thank you. Beautifully but sadly written. I wish you all the best too x

I read both of your stories and was so sad, but wanted to reach out. I lost my dad 8 weeks ago to advanced renal cancer. He’d had it for 5 years but the last year was really tough, with the spread to his bones leaving him firstly in terrible pain, and secondly paralysed. The stress and ups and downs of the year have been terrible on all of us, and my mum in particular. It felt like we were in a spin of misery, hospital appointments, set backs, and more bad news. If there was one thing I would now change, it would be this; my parents always believed that they were in the best hands, that the doctors knew what they were doing and had a plan.  They also believed whenever dad had a bad day, or a new pain etc, they’d sit it out until the next appointment, thinking that was just par for the course. Often he’d get so bad he wouldn’t make the appointment, or would get admitted to hospital first.  So what I would do differently is fight more for attention for him, demand more from the doctors, suggest things I’d read, or challenge them in what they were saying and ask for the most detail and options...not because the Doctors were negligent in anyway, but simply because I realise they were just so busy, and overwhelmed in the cancer hospital, that dad was just one of a number of patients, and consistency of treatment was difficult to maintain, and sometimes, too much time was wasted, or things were forgotten. When someone has advanced cancer, every day is precious, and you need to get things done fast, as delays can be critical. So push for what you think is right, contact the Dr whenever you’re worried and never put things off, thinking they’ll pass. My mum and dad ignored dads worsening back pains for 3 days..in that time he he developed spinal chord compression, which left him paralysed and in hospital for his last 8 weeks, where he then picked up several infections. Treated early enough, he could have stayed mobile for longer... 

hope you don’t mind me sharing this, I look back and think we could have made dads time a little better so wanted to share xxx

Caroline