My husband has just had surgery for a Glioblastoma

By the way, I’m not very good at managing this forum, so please forgive me if I’ve posted my rant in the wrong place. 

Good morning I just read your rant sad you called it. I have a brain tumour,which has affected my memory, hearing loss wobbly. Cannot remember the name of the cancer but it has made my life so different. My x had affair while in hospital, when given three months to live. It must be hard for you but well done for sticking with your husband. Because my memory has been lost I can’t remember anything about how it started, the stay in hospital. I am sure my mood changed at different points of the diagnosis. My x left her boyfriend but how could trust her again so are separated. A big virtual hug for staying with your husband. I know my mood etc changed especially went given the news chemo x not working. Given three months to live, four years later still going. The last scan showed it was now classed as inactive. But was told that it will come back, when it does good night. Consultant said it a rare form of tumour. I miss not having my x so much, we do talk now, I know this disease has changed me. After the last scan sat down with family and talked about way forward. Decided to start a new chapter, live on my own cooking cleaning etc. I miss having the warmth a partner can provide. Your husband I am sure doesn’t want to lose you, but unless he changes it sounds like he will. Show him my reply, even get him to reply or reply and I will give you another way he can communicate. Or get local MacMillan to advise or doctor. It’s very lonely on your own, because of tumour had to surrender driving license. Lucky for my three children didn’t take any side on this , and now got six lovely grandchildren. At times I find myself thinking why me what did I do wrong to deserve this. But talking about this to someone outside the family has helped. I really hope you read this and see your not the only one with this disease. I felt like that and found it very hard to omit I needed help to understand and navigate the challenges this horrible disease gives to you. Please don’t drive your wife away, she’s suffering as well, but it’s worse doing it on your own. 

Hi One2 Many, thank you for your kind words. Life can be so cruel can’t it. I’m so sorry for everything you’re going through. I wish so much that my husband would speak to someone but he totally refuses, he says it won’t change anything.He doesn’t have many friends so he’s quite isolated. I just feel so drained with it all at the moment, so scared for the future, It must be so difficult for you managing without a partner, my heart goes out to you. 

Thank you for your reply, yes live is cruel. I’ve lost over 15 years of memory that can be hard at times. I never was one to talk to people before the diagnosis, i think I was like your husband , think this come from my Dad who was the same. At times now I think I will beat this disease. I have a good family, but they have thier own lives, family etc so don’t like to burden them. I really miss my x at times I find it very hard. With my cancer going from terminal to inactive , lots of emotions and I don’t like to discuss how I feel about it. The only memory I’ve got from the time in hospital, was all my family sat around my bed, then the doctor came in and told us from the scan etc he gave me three months to live. 

keep your chin up. 

Hi MaryW

please don't ever apologise for having a rant in here. That's part of what we're here for. Supporting someone on this journey is tough...oh so tough.

I can empathise with so much that you wrote. Sometimes though even the most patient of us lose our tempers during this journey and its allowed. Its a pressure release so please don't beat yourself up over it. I totally lost mine with G once over the new bathroom that we were installing. It was a debate over bath or shower. We already had the shower tray and I really didn't want a bath fitted. I lost it completely with him and my son declaring "I don't want a f**king bath. I want a shower because you'll f**king leave (son) and you'll be f**king dead (G) and it'll just be me here!" then I walked out and came back an hour later. We got the shower fitted. That explosion did me the world of good that day. 

I was delighted to read that you'd gone out for lunch. Despite the fallout, that's what you possibly need to do more of. You need time to yourself to recharge the batteries and process all that's going on. 

Can I ask is he on steroids? G was beyond nasty when he was taking Dexamethasone. It's a known side effect of it. 

Have you spoken to the medical team about his moods? I'd suggest that you mention them if you haven't. G got quite anxious in the last few months and a very low dose of Lorazepam was added daily. It levelled the moods out a good bit.

Now I'm going to ask you to trust me - you are coping. You are coping so much better than you give yourself credit for. None of us trained for this journey. None of us asked to flung into the thick of it and you are doing an incredible job in circumstances that are beyond difficult. Its the strongest and most resilient folk who show their emotions. By showing them you are processing them and not bottling things up. 

This is a safe and supportive space so please reach out here anytime. We're here for you You're not alone.

I'll stop rambling... for now though I'm sending you a huge virtual hug and loads of strength. You will get through this.

love n hugs

Wee Me xx

Hi Wee Mee, thank you so much for replying, to know that someone understands what we’re going through means so much. He’s not on any steroids at the moment, at his last MRI in October there was nothing nasty showing up at all. I will take your advice though and ask his medical team if they can recommend anything for his mood swings. It breaks my heart the way he treats the kids at times. Our daughter, who he has always adored has been home for the weekend as she does most weekends, said that he was the most animated and engaged with her when she was leaving this evening, he was happier when she was going than he’s been for days, and that’s so hard to handle. I constantly tell myself that he can’t help it but he’s so difficult to be around. I’m dreading Christmas, which again makes me so sad and ashamed, because what if it’s his last one. Thanks again for telling me that you lost it at times too, makes me despise myself a little less.                                              Love and Hugs Mary W

You take care of yourself, draw strength from having your family to support you. I know that sometimes it’s harder for men to talk about things than it is for women. You sound as if you’re a fighter, keep taking each day as it comes. You can do this