Hi Aelv94,

I can only imagine how incredibly tough this situation must be - I totally understand your dilemma and what must be a whole range of different emotions and thoughts about this. You have described your situation well and by the sounds of it you shouldn't be feeling guilty about the way you feel.

It sounds like you are being very supportive to your partner. Naturally though you need support too as this must be taking its toll. Make sure you keep speaking to others around you - friends, family and so on - as well as us here on this forum. People here understand and hopefully you will receive further replies to your post soon. This forum can be a safe space to reach out to others, or simply to write things down when it's feeling a bit much.

I unfortunately don't really have any specific advice to offer, only to say that I hope by continuing and by looking after yourself and taking things a day at a time, you will find peace with any decisions you have to make.

If you ever feel like you'd need additional support from organisations, then do check out Macmillan and also Maggie's.

And as I say, we're always here for support on this forum too.

Wishing you all the best,

Ben
Cancer Chat Moderator

Hi Aelv94

You sound like you've been amazing.  I'm full of admiration that you've managed to get through the last year in one piece and that you're thinking and talking about important things with your partner, like the decision about having a child.  

I understand your question about dealing with uncertainty as my husband was diagnosed with glioblastoma about 2 months ago.  It's a rough ride with Covid too isn't it?  Our diagnosis (and it does feel like our diagnosis - not just his), also occurred after a seizure.  We're obviously quite new to all the uncertainty and, like you, I am struggling with the uncertainty before us and am always the one who wants to plan.  I also understand your comment about dreading how long the illness may or may not last.  I feel like that too.  

I just found this site this evening and thought I would post something to you because what you said struck a chord.  

I feel sure that, if you've managed things over the last year, you will continue to be able to manage them going forward - I guess day by day is all we can ever do.  You sound very resilient.  I really wish you all the best and I'm thinking of you.

Hi there, thank you for your reply - it's so helpful to hear that none of what I'm experiencing is unusual or bad. I'm so sorry to hear about your husband's diagnosis and hope you are both getting the support you need. I know from personal experience how easy it is to downplay your own needs when a loved one is so ill. But like you said, it very much feels like "our cancer" and I've caught myself referring to it like that too.

The uncertainty has been almost unbearable at times, and that has been made all the more difficult by the changes my partner has been going through. He has always been the kindest, most patient guy, but this horrible illness has changed him - he is irritable and just wants to be left alone most of the time. I know it's not him but his cancer that's causing it and that personality changes are very common with brain tumour patients but that doesn't make me feel less alone, especially being surrounded by his family who all have their own loving partners to support them and with my own family overseas. For very understandable reasons I can no longer be my partner's priority.

So when we got the news on Monday that his cancer has spread and that he has developed a new sizeable tumour since his last MRI three months ago, neither him nor I were unfortunately very surprised. He has still not been given a prognosis but I find it hard to believe he can have more than a year left based on both his condition and the medical journals I've read on post-progression survival in GBM patients. He talks about dying all the time now and has gotten a lot more clumsy and forgetful. It's his 29th in a little over a week and I'm scared he won't make it to 30. It's just so deeply unfair.