Oligodendroglioma Stage 3 Left Frontal Lobe diagnoses

Oh honey, such a lot to deal with. You can still have your fears whilst supporting your husband. I have stage 4 inoperable GBM undergoing chemo and radiotherapy. My husband/partner is struggling with my news, I'm sure he also finds it hard that I'm as  positive as I can be.

I personally just have to listen to his fears and let I'm talk, allow him to have his anger and sadness. The journey is horrible and we all have our own feelings which as relevant and should be open. Share your fears whilst supporting. 

Neurodivergant children, your own disability, working nights. You have a lot on your plate and will require support 

I've given my kids some info not all (will give more later). I found very quickly though, my Aspergers kid was so switched on with the questions. I admit to being a bit evasive in some answers but 100% have not told an untruth. That was very important to me. I believe organisations like Macmillan can help in aiding how you tell children etc. But honesty is important.

I agree totally on the "let me know what I can do to help". I've found these people 'fairweather friends', i know they mean well but dont put the onus on me when im drowning. I love the people that say "how you feeling, let meknow. I can pick you up Monday or Wednesday for lunch/ I can come to you on x day/ could I take you here /would it help if I brought some shopping/ can I bring some things over that you might be out of...

Maybe just put out to friends and family that offering something practical and you can decline or accept. That way they are comfortable in their commitment and let them know you often don't know what you need as you are in survival mode.

I'm not sure how helpful my comment is. It's more my personal experience which may not be relevant.

Sending hugs and strength though.

Thank you, your response is really helpful. 

The kids have handled it better than we expected. Mixed responses but all processing it well and asking questions. Like you we’ve said we’ll be honest and answer when we can and if we don’t know we’ll say that as well. I picked up some Macmillan leaflets and have left them for the older ones to read through if / when they want. 

I have said to my closer friends about how ambiguous I find these “anything I can do” comments and I need people to be specific and they have all said what they can support and help with which has helped. They also know I’m not great at reaching out so have been checking in more regularly.

My friend said there’s power in positivity and I do think that as well (as hard as it seems at times) I really hope your treatments go well for you. 

Hi Twd7

a warm welcome to the group. So sorry to read about all that's going on. Such a lot for you to process on top of the challenges of everyday life. I'm glad you've reached out.

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

I drew a lot of support from this community while I supported my late husband through his stage 4 Glioblastoma journey. So many friends do say they'll be there for you blah blah but its at times like this that you see who your real friends are. The results might surprise you. Reliable friends that you can confide in at all hours are worth their weight in gold. I'd encourage you to ask for help but perhaps be specific- eg G's friends took it in turns to meet him for a coffee or to go for dinner, others met him on a Sunday to go for a run etc- but be led by what your husband wants too. It's all a bit of an emotional juggling game til you find a balance that works.

Your kids will surprise you with their strength and resilience. You've done the hard bit by telling them what's going on. 

You do need to take care of your wee self here too. It's not selfish to take a bit of "me time" so go for that coffee catch up, go out to lunch or whatever is suggested. Even a short walk round the block or taking a few minutes with a coffee and a book can really give you a boost.

Easier said than done but try not to think "what if" and focus on the facts as you've been told them. A positive attitude does  seem to make a difference. G perhaps took that to extremes. He was stubborn beyond belief! He was determined to beat the odds they gave him and to a huge extent he did. He got 700 more days than they told him to expect. He was physically very fit (a marathon runner) and ran right up until a couple of months before he passed away. When he could no longer run, he would walk or cycle on his static bike in the garage. Thinking back, it was incredible what he managed to do for so long. 

For now though, I'm sending you a huge virtual hug and lots of strength. 

love n hugs

Wee Me xxx