Feeling helpless

So so sorry to hear this. I can’t offer any pearls of wisdom as I have the same feelings but I thought it might be helpful to reassure you that you are not alone. This beast of a disease is so cruel and wrecking lives. Stay as strong as you can, take one day at a time and don’t think you can’t break down. Sending you lots of love. X

Hi Pewter,

You are coping, it's hard, but I hope you can realise that you are. To answer your question, I guess all I can do is tell you how I try and cope.

It sounds like one, but the positive thinking thing, is more than just a cliche. We naturally always imagine the worst, nothing much we can do about human nature. And to even consider thinking the best outcome makes us feel like we are jinxing things. But it doesn't. Through having cancer I have yet to find anyone that decided to think positively that ended up regretting it. The other way around is certainly true: lots of people I know kinda gave up, only to be out the other side and their biggest regret is not doing the positive thing.

I don't have a fix for your worry but maybe the way I try to think about things will help? I hope so. I was in my early 20s so the oncologists and surgeons tell me, when the starts of my cancer began. I am 47 now. Or 48, I can't remember :-) In my 20s I wasn't worrying about my cancer, so I tell myself why should I worry now. There are plenty of people that have cancer right now and they don't know it. And they're not worrying about it. There are also unfortunately people out there that will get hit by a bus. And yeah, you guessed it, they're not worrying every time they see a bus. I sit here having decided not to worry about whether I get cancer again because I've been through it and I know now that worrying was not worth it. I've seen so many people receive multiple diagnosis and the docs are on it because they are receiving regular scans and so the docs know about it.

I recently had my regular scan and they found a new lump. And I'll be honest, all of that talk above went out of the window! My immediate thought was "not again, I'm not sure I can do it again". But then I realised that I don't really have to do too much. I decided to let the doctors have the problem, instead of take it on myself.

So perhaps the secret is to allow a moment of worry, but tell yourself you've used up your quota for the day. Now it's time to think positively. Sounds like you are already doing this, perhaps you can choose a time to do the worrying. Then the rest of the time distract yourself with the stuff you enjoy.

I can't say I have a magic fix for how I feel, or how you feel. But above is how I try and arrange it in my head: 1) it's not my problem to fix and 2) I refuse to spend all my time worry about it.

As for sleeping and waking, another cliche for you: I got myself a hobby! I immersed myself in something that I enjoy - this goes for you and your husband. Literally, when I go to bed I am thinking about my hobby. The stuff I need to do the next day etc. And it's not a "fake thought", I genuinely am more interested in thinking about my hobby than my scans or op. That's the doctors job.

Seems to me you are doing the absolute right thing and speaking about it. I expect you may have considered it, but speaking with a counsellor or people like MacMillan is as close to a magic fix as I've found. My own experience is that being able to tell a total stranger how I was feeling kinda expelled those thoughts so I could concentrate on other things.

Maybe the secret is putting lots of little things in our heads in addition to worrying, perhaps we can never quite stop worrying but we can occupy our mind with other stuff so the worry has to share that time.

I'm not sure if that helps, but hopefully it answers the question how I cope.

Hi ,

Some great input already . I found the whole knowledge thing very hard to process . I was in full mourning for my mum who was walking around just fine at the time . My sister took me aside and gave me a bit of a talking to . Until the Doctors tell us mum has ran out of treatment options she is very , very much alive . Today matters as much as tomorrow. Another patient told me to practice keeping my mind where my body is ! No preparations for an unknown funeral . Living with a chronic condition with many treatment options still to exhaust . If and when the doctors indicated other wise then we would at that point in time address a shift in the process . She has had both a spread to her liver and lungs . She has lived a good life in spite of a stage 4 diagnosis. Yes as  says there are bumps where more intervention is required . Change of plans and as a family we had to find our feet again . Not super hero’s when you love someone . A good cry is fine . Currently other health problems have arisen as a complication to the liver resection. Still grateful for her great team and waiting to hear how to move forward .

Honestly it took me a full year to feel stronger .

Best foot forward and lots of love and support to help you through the difficult days . Pull tight together .

Also pay close attention to your own health needs . It’s needed for the long haul .

Court 

Hope your team get a good plan together to get you over this bump and onwards to more good living .

Court