DH saying "goodbye"

[Timeforabiscuit]

Dh has a stage 4 glioblastoma tumour, and we are just waiting for the next scan, but living in a no man's land limbo between ongoing treatment, or terminal diagnosis - it's incurable and he will die from this, probably within the next 5 years.

We've been doing all the right things, being pragmatic, going to counselling, openly talking about all sorts, but he's had a really really low period mood wise, and it's like a switch has clicked where he's got the grim reapers arm on his shoulder.

I am at a complete loss about what to do, he's uncomfortable, noise is painful to him, he's feeling the loss of his old life acutely, we have two daughters in early teens and he can't cope with conversations with them.

Outwardly he passes as fine, but he is struggling and rallying, and it's just torture to watch.

Does anyone know how I can keep it together, as I will be on this rollercoaster for months and years, and I don't think journaling and yoga is going to cut it, friends and relatives are companionable and concerned - but they arent a substitute for the man who knows me best and we've loved each other for over 20 years.

It's very very hard. I'm so sorry life's put you and your family in this situation.

Can you get a counsellor of your own? Someone you can just indulge your need to talk, be emotional, get it all out? If you make the effort to find someone you click with now, they might be invaluable to you, as time and events progress. And also, searching now will make you feel like you've something important of your own to focus on, something that's just for you, something that takes care of you.

I did not want to read and not post. I'm sorry to hear of this. Its so difficult. My friend had a similar situation. He really did fight it and again could not really accept the situation. Then medication and treatment kicked in and his pain and side effects really impacted on everyone. His wife gently tried to steer him to accepting and discussing with kids but he did not get to that point really very much. In retrospect I think I/ other friends should perhaps have jumped in and really tried to get him to see that although he was sick he also had responsibilities to help other people before he left - particularly his kids as that was somethng they have to work on going forward in their lives.

I have since read a little about this and think that Jon Kabat Zinns work and Pema Chodrons writings were useful for me in learning a bit around acceptance. I also found Marsha Linehans work around radical acceptance good to read.

I'm sorry and wish you all well.

I am in a similar situation- my DH has terminal cancer but is receiving treatment to slow the spread. He is now registered disabled and we have 4 DC and my youngest is 7. DH is miserable, hyper critical , negative and finds all of us difficult and hardly communicates with the kids unless is to have a go about academic results - it’s very upsetting as he doesn’t understand the amount I do and dismisses it and takes no responsibility about how our kids are coping as it’s all about him. I have had individual counselling as has he and we were offered family art therapy via the hospice and my DH discharged himself - so you may want to consider that type of option for you all as it’s important- I don’t want my kids to remember angry sick and miserable dad

If he's uncomfortable, then he needs better pain management and it may be worth talking to the pain management team if he's under them or get your GP to refer him.
And importantly, you need to focus on your own well being here and not just his.
You'll be the one left holding the kids and trying to manage without him, and sometimes I think it's OK to tell the person that they may be sick but it doesn't give them the right to make their rest of their lives a misery for themselves and everyone that loves them.

FWIW, I used to work in end of life care and saw far too many men use their wives as beating sticks............ the whole situation is shit for all you. And it's OK to remind him of that sometimes. I'm so sorry you're in this situation.

What a terrible time and prospect for you.

Another vote for you to have some counselling or therapy yourself. And see if the specialist nurse or anyone in the team is equipped to talk to the children, of they would like that.

I just wonder if you have a Maggie centre near you too?

I'm sure someone else will be along to offer more helpful advice soon, but I just wanted to say I'm so sorry you're in this awful situation and I've been there so want to offer a hand hold if nothing else.

We went through a similar cancer situation with my mum and I can't begin to imagine how she or my dad felt as they did a good job of hiding it, I suppose to not scare us. He's talking about his old life...remind him life doesn't have to stop. Yes he may not be able to go a hike or a run but you can all make the most of what he can do in the present, take photos, videos, days out in the car or board games, just make memories and have special time as a family.

I'm not sure if you or your husband have been offered help from macmillan nurses or another charity but it may be worth reaching out to them too, there may be things worrying your husband that he is afraid to discuss with you for fear of upset or worry.

I'm not sure how your teens are coping but I too was a teenager at the time and think I lived a lot in denial and tried to block everything that was happening out as if it wasn't happening to me. Looking back I think I'd of benefited from counselling, so you're definitely doing right by seeking this out and also talk to them, keep them included (if they want to be of course) and if they're old enough to understand. Also encourage them to ask questions if they want to.

Lastly with regards to friends and family, they can be a sounding board if anything else or a quick distraction with a coffee catch up.

I hope I haven't offended you in any way with anything I've said and I really hope that you get the best outcome possible from the scan. 💐

Thank you, really thank you - this is all really sound advice, and it's so helpful to hear from people who have been through similar from different perspectives.

I'll definitely source my own counselling, it was hugely helpful but I only had a fixed number of sessions, a longer term arrangement would be more helpful now - I had just hoped that kicking the can down the road and doing the exercise would be maintenance enough.

The see sawing between being a spouse and then a carer, and when he's in a really bad mood a skivvy , it's very wearing, alot of what you said @bigbird50 chimed - he's been having huge temper tantrums over cucumber in his sandwich (made him feel ill day before yesterday and I forgot it was still on the no eat list), his jacket potato wasn't big enough (offered to make him another, but it was the fact he really enjoyed the meal and wanted to keep eating it) - I have had a massive word with him setting a poor example to the kids and threatened to start a game of "did my husband say this, or did a toddler?" Which has given his head a wobble for now.

The reading around acceptance looks really interesting @ThisisMax , so that will hopefully give me something to hang all this stuff rolling around my head on.

You've had a word with him about the example he's setting for the kids, but have you have a word with him about how you're not his skivvy?

My DM had counseling via the local hospice when my dad was dying from a Glioblastoma. Also my dad went to weekly all day sessions at the hospice to do group therapy, complimentary therapies, art therapy etc.

These might be helpful to you both.

You are very welcome. He has had to let go of lots of his future which is terrifying so world war can break out over cucumber in a sandwich- I get it. But he is also terrified. Acceptance does not come easily, particularly around loss.
I found acceptance exercises invaluable personally during a very traumatic time. Read Marsha Linehan- I found her inspirational. Also Ram Dass. I wish you both the best. Will say a prayer tonight.

I'm so sorry OP this sounds incredibly difficult. Second the advice for your own counselling and I would make contact with the local hospice or MacMillan- people have the perception that they are only for final weeks/days/hours but they are experts in supporting you from diagnosis to beyond the loss. They will be able to advise you on everything from benefits - so you don't have to worry and can enjoy your DH's good days - to support groups/phone calls/pen pals who can support you. Of course they are not the man you love, nobody ever will be, but often they have gone or are going through their own losses and can help you find constructive ways to use your pain, fear and anger - all of which are entirely normal - and help you begin to think about what you and DH want for his future. Sometimes it is as simple as knowing that you have discussed what happens if/when his needs become unmanageable, where he wants to be at the end, what goals he has between now and then.

My son was diagnosed with an incurable brain tumour just before his 16th birthday. So different circumstances but he died aged 18 and an adult. He was extremely intelligent and knew he wasn't going to beat this. I had to follow his lead. Granted he was not a husband nor had children of his own but he had to face his own death.

We took the good days when they came. The bad days he was given extra leeway with anger. But he wasn't allowed to be awful or rude.

He chose to act as if he was going to beat this. Even 2 days before he died, when in a hospice he told me he was going to uni. Of course I said. He knew what a hospice was and what it meant. But I had to follow his lead.

Your husbands journey will be different to yours. And those of your children. It's shit. We agreed boundaries of behaviour. He was allowed to take it out on me (to a certain extent) because it was a living hell every moment of every day for him and he needed someone daily he could be honest with. He had his own counsellors and I had mine afterwards.

I learnt to have patience where before I had none. He was frustrated, scared, angry and lonely I'm sure in his own right. I too was scared, angry and lonely too. We clashed, we loved, we laughed but mostly we loved and tried to live as much as possible.

It's an horrendous journey. Sometimes you will pull together as a couple, as a family and sometimes you won't. Love fully, forgive easily, don't accept truly bad behaviour. Make sure you get rest together and separately. Call on every support you can.

I'm sorry you are all going through this.

@Watchkeys no I pulled him up on that straight away, he has apologised and he has been perfectly complimentary since - but I'm not exactly in a rush to make his lunch now!

@Timeforabiscuit I would keep an eye on your wellbeing and if you aren't feeling good then see your GP and/or a consultant. How you're feeling is normal in response to what you're facing, but there's probably stuff they can do to make it more bearable for you. x

This is a very difficult situation to be in but it will share many things with other quite different problems that crop up in peoples lives. A guy I worked with died within 5-6 months of his glioblastoma diagnosis - far sooner than the first figures I heard. I can say my daughter was seriously ill and hospitalised for 6 months and the worst points were where we started to accept that she wasn't going to make it - a completely different situation but I have perhaps experienced some of the same problems in coming to know how best to deal with a terrible situation. My personal experience brought me to realise I had to accept the possible worse case outcome and also - and this is IMHO - what most of us find so difficult to deal with - the uncertainly - learning to live with uncertainly is so difficult - so I can really empathise with that. I found it was important to remain optimistic for my daughter - even when I howling inside - it was important not to overreact to bad news - complex illnesses combined with uncertainty mean there will inevitably be setbacks and news you don't want to hear - I found it was helpful for my daughter to deal with these setbacks in a positive way - not to gloss over anything or to be unrealistically optimistic - just to accept that an unpredictable situation might also have some positive moments and that, in any event - what has happened has happened - you have to accept it quickly and move on and not dwell on it as it doesn't help anyone. I found that being positive, being strong for my daughter - actually helped me too - I felt like I might be doing something to help - I am sure she was worried about me/us and seeing us get stressed wasn't really going to help her in any way - we had to suck it up and absorb it even if we didn't want to or feel up to it. There really wasn't any advice that helped much TBH - I don't know if we were really taking anything in TBH - we had to find our own way - as I suspect you will too - your story, your journey through this will inevitably be unique to you - if you ever find yourself looking for any kind of magic bullet solution - stop - there never is one. I think it will be a home made, improvised, invented on the hoof multitude of small things that you will find and use to manage this process. Looking back I am proud of how we handled an awful situation. Perhaps thing about that - I once saw someone say you might find some inspiration if you were to picture yourself as a hero in a film with the odds stacked against you - how would the story play out?

On a positive note - my friends wife and children are flourishing and have a really close, happy and loving relationship. I miss my friend - he was a really good guy - I know he'd be incredibly proud of how his wife and kids went on to live their lives - we talked about our kids all the time - that's part of what I liked about him.

I'm sorry if I've been unable to add anything helpful. Good luck.

I'm so sorry to hear you're going through this. My mum was diagnosed with a glioblastoma in February last year, it's been unbelievably tough and I wouldn't wish this journey on my worst enemy.

Have you joined any of the support groups on Facebook? I've found them so helpful, there is a specific one for family members that you might find useful called 'GBM ( or any type of brain cancer) Caregivers Support Group'. Lots of people on there in a similar position, a very supportive and active group, a place to get practical advice about how to cope when DH is in a bad place.

I'm also in 'Glioblastoma - GBM SURVIVORS TO THRIVERS!' which I love, lots of members who are long term survivors, seeing their posts helps to keep my head above water. There is lots of practical advice on there about the effects of steroids & anti seizure meds, my mums personality has changed massively & this group helped me understand why some of that is and come to terms with it. There is also tons of information about alternative therapies, I spent probably the first month after mums diagnosis reading every clinical trial I could find trying to find something to buy us some time, lots of knowledgeable members in this group always happy to share details of the regimes they're on.

My only advice would be to try & remain positive. GBM is not fatal 100% of the time and there is no reason to believe your husband won't be one of the long term survivors. Believing my mum will be one of those people beating the odds is how I cope and how I think she does too.

Truly wishing you all the best.

My best friends husband had brain tumour and they fought it for 7 years. The last year was hard - the only way she survived with ‘it’ was her own counsellor and the fb group for wives going through the same. The last year was horrific he had no short term memory, no sex, no affection and just waiting to die and the kids were 7 and 9 and he was in a wheelchair.
eventually she got carers in and pushed on with her career - she is an international barrister. She got a full time nurse and counsellor for the kids and herself. But she was affluent enough to do it. They were together 30 years.

I think your own counselling is vital. Take up
offers any offers to have a break. She felt after 4 years she lost her husband - and he was angry for 2 years whilst his brain changed his personality and man she loved. For the last year she was hugely guilty as she wished him dead and alive at the same time. Wanting him to live but for the suffering to stop.

i don’t know you but take the glimmers of sunlight and ride out the storms my darling and build an army to look after you

I am so sorry for you OP and others going or who have gone/ going through this. I lost my husband over 20 years ago to angioglioma just over one year from diagnosis to his passing. The vigilance of his symptoms and the whole host of other emotions was exhausting along with a whole load of emotions. I can't imagine having all that limbo feeling and having teenagers to support through this too. My heart goes out to you all.
Taking time each day for yourself is important and hope that you can find some good counselling. Hospices may help you too as a carer/spouse.
Macmillan can be wonderful for support and signposting.
This charity seem amazing shinecancersupport.org/getsupport/shine-cancer-plus-ones/
They offer support for younger adults 20-40s++ both for the person diagnosed and family members. The link is for the circles plus one. Wish I'd been able to access something like this. I felt very alone in my experiences and the internet was in its infancy 😳 (for me anyway!!)
Maggie's Centres are great
www.maggies.org/cancer-support/supporting-someone-cancer/ If you have one near you do go and seek advice/support there.
I've heard good things about this charity for teenagers with a parent with cancer
www.riprap.org.uk
If your husband needs any support Macmillan offer free telephone counselling and his CNS should be able to find him any counselling or other support.

Posted too soon....
take care OP x 💐🍰

Hi - my best friend is stage 4 glioblastoma and he is 15 months in after the diagnosis. after an operation, chemo and radiotherapy since July last year he has been in remission. He has a MRI every 8 weeks and we all get nervous before and while waiting for results but so far it hasn't grown back. He knows it will come back but he has also chosen to not engage with the diagnosis and what that it means. HIs husband knows all the facts, statistics and long term prognosis but my best friend has opted to live in the moment and that the less he knows the better. Im giving you a big hug - its hard to know that you can't do anything - but I still pull him up on things, we still laugh and make fun of each other and we still argue and for now he is very much still here and I'm squeezing him tight.

My dad died from a brain tumour. Please get counselling for your DC and for yourself, even if you think you're fine and don't wait for him to die for you to get help.
"I have had a massive word with him setting a poor example to the kids"
Unfortunately having a brain tumour will affect the way he behaves and what he says. It's beyond his control and having a chat will likely not change things because it's not something he can control. You need to accept this as a fact and you need to with tide instead of trying to fight against it or you're going to burn out.
The brain runs the the show, if his brain doesn't work right, you'll see that reflected on everything that he does/says. You should all get counselling now to help you cope with things because it will get worse and you don't want to end up resenting him for sth he can't control. This is easier said than done, hence the getting professional help.
Focus on making good memories while he still recognises you and the kids.

I think compassion is key here, and getting as much support as you can.

And when I mean compassion, obviously towards him, and understanding that it's not the real person but the disease, and no one wants to be miserable and grumpy out of choice, and self pity is allowed.

But also compassion for yourself. You're allowed to be angry and to have a pity party too. You are suffering from this cruel disease

Also pain causes grumpiness, misery, depression. Get him as comfortable as possible.