Big change in prognosis

Dear Catherine 61

Thank you for sharing your experience & feelings on this forum. 

I know exactly how you feel & I want you to know that you are not alone.

My husband was diagnosed with oesophageal cancer in Feb 2019. He went through chemo then a major op then more  chemo & he really felt he had beaten it. We have just found out the cancer has returned & is untreatable. At the moment he feels fine which makes the news so shocking. 

I go from feeling shaky, sick, devastated, can’t concentrate to OKish. I really want to be strong & give him as much support as I can which is so difficult especially when we can’t even go away for a few days. 

I hope you get better news soon. Try to take one day at a time & please post again.

HI Catherine61

thanks for sharing and I'm sorry to hear that the news recently hasn't been what you'd both expected.

I can relate to the maelstrom of emotions. I think everyone in this community has been through them all many times. I know over the past 6/7 months I have. My husband is 51 and in the space of two weeks last Aug/Sept went from being a high powered IT manager and marathon runner to a terminal cancer patient, unable to work. He was diagnosed with a grade 4 glioblastoma (brain tumour) and life has never been the same for any of us since.  

Now I understand that's an entirely form of cancer and  to be honest, his prognosis from the start wasn't good. Lockdown/COVID has meant he hasn't been able to do any of the things he hoped to do- yet. I just hope the restrictions are lifted in time for him to be able to do something. The clock's ticking and it's ticking too fast. 

Things on the journey do change in a heartbeat. Emotions are natural and allowed. Take things one step at a time. 

I've sobbed my heart out, I've been angry, I've never felt so useless in my entire life. If one more person tells me how strong I am or how well I'm coping, i think I'll scream. I'm just doing what I have to get through each day. And  you know what, you'll surprise yourself with the resilience you develop. The strongest, most resilient are those who show their emotions.

I really hope things start to look a little brighter for you both.

Hang in there.

love n hugs

Wee Me  xx

Thank you so much for your reply and sharing your experience too. I’m really sorry to hear that your husband is also not very well. The words you hear associated with cancer like ‘untreatable’ or ‘incurable’ are so cruel, such hope stealers. 

I would have replied sooner but had a pretty bad day yesterday. Every little completely unassociated thing set me off sobbing - at the moment am I in a cycle of ‘is the last time we will do this?’ We go to a lot of events and just last week I booked something for May 2022, before we got the next diagnosis - now I can’t begin to contemplate that we might not get there. 

My poor husband must be feeling even worse with me being such a mess and I really must get a grip on myself before I start to affect him negatively. He’s being so brave and strong.

I hope you and your husband are finding some comfort and good times together in amongst the low points. I suppose all we can do is to try to have more high points than low. It feels easy to say and hard to do, doesn’t it? This whole thing makes me realise how helpless you can feel - I wish I could take his disease away; I wish I could help more with your pain too. I send my very best wishes, virtual hugs and I don’t know how much it really helps but just to say I know all the things you are feeling and you’re not alone x

Hi WeeMe 

Thank you for replying so clearly and honestly. It sounds like we have been on quite similar journeys in terms of time - it’s so shocking how we can go from ‘normal’ to fundamental life-changing stuff in an instant. 

I feel like I’m being quite childish at the moment, I’m trying not to get too caught up in my own feelings and also trying not to think further than the next treatment. I have this stupid hope that ‘this treatment will be the one that fixes things’ or ‘all they have to do is remove it and we can go back to how things were’. I am not ready or able to accept things and just let it run its course; I keep thinking there must be something else we can do. I’m not sure if that hope is making things worse.

Everyone writes so eloquently about their experiences. I am just a jumble of emotions and a splurge of thoughts on a page. I want to stamp my feet like a two year old and scream ‘It’s not fair!’ I want to shout and swear. It’s just not fair for any of us that this cruel disease is doing what it’s doing to all of us and to our loved ones. I want to fix it.

I hope I can find a more measured place to live in, emotions-wise. I wish I was able to take it all away, for all of us. I wish I knew the answers. I hope beyond hope for a miracle for us all.

Bloody covid has taken away so much from us all, so many opportunities for the interaction and support from others. I too hope we get that back soon, and I hope you and your husband get to enjoy some of the things you want to do.

Everything I want to say to you sounds like a cliche but I can’t find other words. I send you my very best wishes and prayers. You have really helped me and I hope that it gives a little bit of comfort to know that you’re not alone, I know it doesn’t make things normal again but I feel your pain and I understand what you’re going through.

Take care of yourselves xx