My first time reaching out to this group and sharing our story. My husband has terminal stage 4 oesophagus cancer. He is such an inspiration, so strong and has faced his chemo, radiotherapy and immunotherapy head on is such a brave courageous guy who always has a smile for everyone however he is feeling. He is a fighter through and through from the initial 3 months to get your affairs in order to today has told me it’s 1000 days since his diagnosis. Initially in denial he now accepts, it’s not if but when as the cancer has spread into most other areas of his body, lymph nodes, liver, lungs, stomach. It is such a rollercoaster so exhausting and I feel so sad watching the man I love deteriorate day by day. 6ft 4, big strong solid ex rugby player was 19 stone now just 14 stone. He has always been a foodie, loved to cook, entertain, he cannot eat at all, can barely swallow now. It is so cruel watching him suffer and unable to enjoy life as we use too. Our life feels like an egg timer, every day is slipping away I don’t think I will ever be ready when this day comes. We’ve had some wonderful experiences, some we wouldn’t have had without his diagnosis. I am so grateful for every day we’ve had together. We both continue to work, work is his lifeline, I do find it a struggle sometimes when we’ve had a bad night and to keep my emotions in check. Is exhausting having to face the world when your world is falling apart. My husband works from home, can rest when he needs too, my job requires me to go into my office. I feel so alone dealing with all of this, am tired of putting on a brave face, digging deep to get through the day, evenings sat alone while he sleeps, meals for one, all the things we use to do we no longer do. I am so grateful to find this group of carers, my heart goes out to each and everyone of you going through your own turmoil, want to support others, share our experiences to get us by. Waiting for results, scans, next treatment does not get any easier, I have learnt to keep busy, focus on other things, self care connecting with nature, mindfulness, meditation helps calm me when it all feels overwhelming. Friends mean well in truth don’t know what to say, or how to support, I don’t want to be the sad miserable one, as C feels all so consuming. Some normality, distraction helps to keep me sane. I reach out for counselling when I need too, getting a rescue dog has actually rescued me, my four legged companion now my soul mate when I need to let the tears flow. Some days I am just so so tired, emotionally exhausted and fatigued. I try to manage family life, working, caring for hubby, hospital visits etc. Our daughter turns 18 next week and is off to university next year, she is so ready for this next chapter, am now dreading being on my own as our plans dreams for our future fade away. I have lost my dad, my brother to C and know from these experiences how hard it was at the end, this scares me knowing I will now have to deal with this with my husband too. People say to me I am amazing, so strong the truth is we don’t have a choice do we, we just have to cope and get through as best we can, it’s just bloody hard such a rollercoaster of emotions x
HI Tough Love
oh I just want to give you a huge hug after reading that.
I hear you! My husband was diagnosed with a grade 4 brain tumour in Sept 2020. His prognosis was never good. Every time someone mentioned a timescale in the early days of this journey , it reduced even further. Like you, I see it as an egg timer. We were told 12-15 months. The 15 months runs out in a few days.... and we've no idea how long this journey will continue. Physically he's still very fit. (He's 52 and a marathon runner).. Mentally he's slipping slowly. His tumour was in the area of the brain that controls speech and language and understanding. Now he's like an early stage dementia patient. It's so hard to see this man that I've been with for 33 years go from being a high flying IT telecommunications project manager to the man that sits and struggles to read more than a few words and struggles to find the right words to speak. It's heart breaking.
Like you I'm keeping things going - work, family (kids are 21 and 23), running the house etc - being the positive one. You're right though. We have no choice here. We just have to keep going one day at a time and on the darker day, one hour at a time.
What's tearing me apart is the "lasts".- the last wedding anniversary, the last birthday, - you get where I'm going with that. We're no facing some of these "lasts" for a second time as he didn't expect to still be here in all honesty. Today is an odd last that's breaking my heart. We're off to a black tie ball tonight (I hate these things - give me jeans and converse over the black frock and heels any day). It hit me hard last night - this is the last time I'll dance with him. Trivial I know but it's one of these bolt from the blue things that rocks you to the very core.
Time to pull the big girl panties up - again- as well as the spanx!
Sending you a huge hug. Stay strong. You're not alone on this rollercoaster. I get it.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Thanks. We danced the night away. The big girl panties stayed up and I held it together for the night. (Ok one wee wobble just before the end) Made new memories...my feet will forgive me one of these days
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I fell apart at the weekend out of nowhere, I’m tired of putting the brave face on like you I don’t want to sit there talking to myself while he sleeps it’s such a hard time don’t beat yourself up just keep writing on here , get it all out xxx 
