Hello

Oh Mr AutoPilot, I hear you. I'm so sorry to read all that you, your wife and your family have been through. This whole journey is an unrelenting rollercoaster ride and its a tough one for all involved.  Sounds as though you've been doing a great job keeping it all together - especially if you've conquered the mysteries of the washing machine :) 

My own ongoing journey is a bit different. My husband was diagnosed with a terminal brain tumour around this time last year. He had a nasty seizure 2 days before his surgery and that combined with the effects of the surgery put an end to his working life. He's 51 and till that point had been a high flying IT guy, ironically specialising in communications systems, His tumour was in Brocas area of the brain and has impacted his speech/understanding and communication skills. 

Our kids are older than yours I'm guessing (21 and 23) but at the end of the day they're still your kids. I've held my daughter as she sobbed that her dad will never see her kids. I;ve held my husband as he's sobbed that he won't get to do his father of the bride speech - something he's been desperate to do since she was born.  My kids have seen things that no child, no matter how old, should see their parent go through but you know what - they're resilient wee creatures. Draw strength from your own kids - they'll help you get through this.

Filling the day is a challenge. For me it's easier as I'm still working fulltime from home. Filling my husband's day is tough as he's limited in what he can do. Fortunately he can still run so that's keeping him going. Long may that last! 

I also get the wanting to offer advice to others about what you've gone through. Do you journal or write? I've found journaling a great help to keep things in perspective and to get things off my chest. I am an indie author so would also like to give something back in time and have begun a Blog/Book ( time will tell) charting our journey and the associated fears and frustrations that no one tells you about. Sadly this roller coaster ride doesn't come with a guide book.

Not sure if this has helped in any way. I hope it has. 

Stay strong. Hang in there.

Love n hugs

Wee Me xx

Hello Wee Me, thanks for your reply it relates completely! It sure is a rollercoaster, one that you can’t get off with the unknown twists and turns. I used to ruin clothes in both colour and size along with not knowing where to put what liquid but I’m pretty good and getting better, though the loads each week with five of us is unreal. I’m coping overall but you have to it’s out of love and wanting to along with my duty but it’s a tough one there’s no two ways of that. 

I’m sorry to hear of your family’s situation especially your husband, I hope he can have as much comfort and peace as possible. Again he’s very young which has no doubt been hard to accept but I guess there’s no age limit to these things. My wife who’s 37 has not yet been diagnosed as terminal however they have given her up to 48 months. To me that’s pretty terminal as it could be anytime within that timeframe. I find that tough. It’s quite crazy really as my wife was a brain injury nurse and now has this, I would love to tell you our full terminology but without looking at the letters and specialists notes I struggle to remember them. I really feel for your husband as we’ve also had those heart to heart and breakdown moments both privately and with the kids but you have to remain strong for their sake at least no matter what the ages. Ours are 10, 15 and 17, two boys and a daughter. They’ve been amazing and as always make me and their mom hugely proud with how they’ve had to deal with this on top of the pandemic lockdowns at home like really stringent because of vulnerability, I’m sure you know all this and have had to do the same. 

I too have my daytimes and early evenings filled as it’s no stop with caring, cleaning, cooking and the kids etc but the late nights I do struggle to switch off. I’ve done the counselling stuff but it took 7 months for a referral and I’d come out the other side of depression through this so it was a bit of a non starter at that point. I just go up and watch my wife while she sleeps before heading back downstairs to sleep when I can. 

I did start to keep a log of everything but stopped when my wife wasn’t really into it. Everything has been kept private as in no social media with a small group of family and friends who are kept in the loop but she is purely focused on taking each stage as it comes, whether that be a new treatment, another scan, ticking things off as and when, it works for her so I didn’t really keep a log from that point. I listened to some very good and informative podcasts along with reading a ton of stuff which is good as it’s armed me with information I need to know when or if things change again. Knowledge for me is important and has helped. I just have the want and urge to really try and help others in this situation or any of a similar kind whether that be by talking or whatever so there’s definitely some positives to keep in mind. Your message has helped and without sounding bad, that someone understands our situation, I so wish that wasn’t true. Thank you though and best wishes to you and your family. X