Morning
I'm really struggling and just wanted to write things down really. My husband has gbm4 diagnosed last October. Had surgery, radio etc and just finished 6 months chemo. He's doing really well and we are hoping for some stability even very short term.
I've been off work since the diagnosis and am going back next week on a phased return. I feel so guilty though, he has a scan and will have to go on his own and get the train. I feel like I should be taking him. I'll go to all the appointments with him and can be flexible most of the time with work. But I'm so torn, I really like my job and feel like I need it for me but then feel huge guilt at not being home all the time given we know we have limited time.
We don't need for me to work financially so I could just stay home. I just feel so overwhelmed & conflicted. I honestly don't know if I'll be able to manage work along with everything else so may well have to leave anyway.
I feel so alone in this horrible journey 
HI Jobo
I hear you...and I'm in the same position.
When G was first diagnosed in Sept 2020 he insisted that I kept working. He is stubbornly independent and insisted on going to some of his radiotherapy appointments alone. I'll be honest, I went to all the scan appointments but that was largely because I didn't trust he would actually go and also knew if it was a different hospital that he would get lost. His tumour impacted his ability to read so navigating hospital corridors was a challenge too far for him.. Our health authority also seemed to delight in sending us on a tour of all their hospitals for scans, including the childrens' hospital! We visited 10 in total! Throughout I have been fortunate that my employer has been extremely supportive and flexible with me.
Even now as we are in the final days/weeks of this journey, I am still trying to work and G is still insisting that the kids and I go to work as normal. My son and I are both working from home. My daughter is a mental health nurse so she's in a different situation.
Something I have learned over the past three years is that logging onto work/going into the office can be good for your wellbeing. It gives you a few hours of "normality". It gives you something to focus on other than the situation. Now some reading this may deem that a little selfish but trust me, its not. You need a little normality to give you the strength to get through it.
For me the secret is finding a balance. As I said, I'm fortunate that I can work from home. Although thanks to lockdown and then G's diagnosis I have been in my living room since March 2020 and am now climbing the walls! I am so sick of the sight of this room! I'll not lie- there is a little part of me looking forward to going back into the office and seeing my team face to face once this is all over and I've pulled myself back together.
That balance can adjust as the journey progresses. For now I still log on 5 days a week but I'll be honest, I'm not in the right frame of mind to be dialling into zoom calls all day so have agreed with my boss that I can just focus on emails and admin. At the stage of the journey we are at, I'm permanently shattered and my concentration is shot so I do tend to log off a couple of hours early and go for a walk to clear my head.
Ironically, G would give anything to have been able to continue working after his diagnosis but it wasn't to be. He's a total workaholic!
You're right- this is a horrible journey but you're not alone. We're here for you. We get it. We understand.
Hard as it is, we also have to look ahead to what we want/need to do once this journey ends. Personally I'm not ready to give up work yet. I'm 53 - too young to retire - and at the end of the day, I enjoy my job.
So please don't beat yourself up too much over this. Do what you feel is right for you.
Sending you love and light and hugs and lots of positive energy. Stay strong.
love n hgus
Wee Me xx
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