To be totally and utterly devastated by my Ex's malignant brain tumour

[Abbazed]

My Ex collapsed whilst working in the small market town in the Lakes. We have a 14yr old son with ASC . Ex has four seizures in ambulance on journey to hospital. Turns out to be a malignant brain tumour.

I really don't want him to die. I know I've no control over this.

I am so sorry for you.

Best wishes

Oh Olly, that sounds like T. He's being very cruel and aggressive to his Dad. He has to be very careful as he rips his head off.

The chemo is something that worries me if he does survive surgery. He was always so healthy and never ill with anything. My aunty died from cancer in the 80s and it was soul destroying to see her fade away. His surgery is meant to be all day.

I really don't want him to suffer any more than he is doing. In some ways, passing would be kinder for him and awful for our son.

Olly, how long did it take for her deterioration? Could she still talk? I'm ever so sorry for your loss

I'm so sorry.

I would contact the hospital , explain you are his ex and you have a teen son together, and ask if a special circumstances visit would be possible.

Macmillan (cancer charity) are absolutely wonderful , for information, support, and advice, either by phone, online or face to face. I can't recommend highly anough their services for partners and families as well as patients. They have a whole section about telling and supporting children and teens .

Just wanted to say how sorry I am, life is just so bloody unfair x

@Abbazed The second & third tumours were diagnosed in October 2015- she had been on "wait and watch" before that. Surgery (Feb 2016) was about 9 hours. I went in to see her in the HDU and she was sitting up, smiling, big thumbs up with her hand that had previously had the tremors.

Summer was lovely - she was on loads of drugs and got tired easily and was irritable at times but other than that, fully mobile.

The radiotherapy started around September and her mobility got worse very quickly. She also started to display symptoms of dementia which is a side effect of radiotherapy in the brain - she would tell me hospital staff were attacking her, she had a broken nose, they stole all her things and then put them back to trick her. She accused her friends of stealing from her, breaking into her house during the night and moving furniture. None of it was true. But at times she would be fully lucid and completely like herself. (I think this made it harder for her DCs when she went off into sudden rages or meltdowns). As I said, she didn't have the right genetics and she moved into palliative care about November 2016. That was a bit of a shock- after having regular appointments, loads of consultants and multi disciplinary meetings and care and attention it was the McMillan nurse and that was it. She was brilliant but it did feel like we were abandoned.

It was a slow decline from there on. We still had good times and happy moments. She didn't lose the power of speech - but she would be very confused at times, totally lucid at others. In the last six months she would often confuse her son for our brother, and didn't recognise her daughter. That was hard for them. She contracted sepsis for the second time December 2017 and died February 2018. She was only mid 40s.

Sorry - that all reads as very depressing. We did have moments of joy. It wasn't all misery and gloom. I talk about her with her DCs and we laugh and remember her. They are remarkably mature and lovable individuals despite such a traumatic and unfair adolescence.

Last word - promise! The prognosis for brain tumours is not good, but the management and treatment is improving all the time. The clinicians were very honest about potential outcomes.

So so sorry op. 💐

Thank you all for your very kind words and very much appreciated support. I

We are going to see him at his home at 1pm tomorrow. He is going to wave at our son. Have made a poster too.

He's been my X for 14 yrs but he was always my friend. He rings me during lockdown as he was lonely.

Rph have been honest which my son tells me scared him a lot. I'm planning to also go on Fathers day x we've got him his favourite malteasers☺and a trophy son made from a baker Ross kit and a keyring and soap as I've heard nhs austerity means no soap.

God, id give anything to make him better.

Olly, her deterioration sounds very difficult as a family. I'm very sorry for her children. I shouldn't pry but how are they managing? I don't feel I'm enough for our son. sorry for your loss..cancer is straight from hell

I’m sorry for you and your son. If I knew how 💐

I just wanted to add a positive note, I had a close friend who had a brain tumour, a series of coincidences resulted in it being picked up, but despite that he was told it was very advanced. It was affecting his sight, he was terrified for his relatively young children, but had an op, chemo, and was very ill, however he has made a dull recovery and is now a year into his all clear. He gets dizziness from time to time and has less peripheral vision that he used to, but is otherwise fit and well. He too said McMillan were great, both for him and his boys.

So sorry to read those who suffered losses. I just wanted to share a positive outcome too.

Hope you all are doing ok now, whether in recovery, grieving or dealing with diagnosis

Made a full recovery. Must learn to preview first

Ah what an utterly shit situation OP, just wanted to wish you all well. My DS went through chemotherapy a few years ago for a brain tumour, I won't lie it was bloody tough but we got there in the end.

Holding your hand XX

My ex died 2 years ago from different cancer but one that ultimately effected his brain. My son was 15 when he died. We’d been divorced for 3 years - my decision.

I did not find McMillian helpful at all but Maggie’s were brilliant and found a teen councilor who was great. She explained to me that often children don’t want to talk to parent because they know it will upset the parent - they need someone less involved.
After he died, Cruise bereavement were utterly fabulous too. Again, they had specialist teen councilor who helped my son so much.

I was honest with my son from the start; cried when I was sad and told him how sad I felt. He was a little confrontational at the beginning “why are you upset? You divorced him!” Etc but we talked it through ...... that I didn’t love his dad anymore but that I did still care for him hugely and I was sad for my son losing his dad but also sad for me because I didn’t want him to die.

3 years on and I won’t lie, my son still has tough days and it’s left it’s mark but we are ok.

The thing that really scares me is the thought of him dying alone. I wish I could be there to hold his hand. Yes, he's my Ex and I'm married but the thought of him dying alone breaks my heart.

We saw him today. He looked like the T I know and love but with a reddish black eye. He talked a bit and was himself. It made me and our son feel better. I'm trying to hope and be positive.

Thanks for all your kind replies. @Suchan1d10t a full recovery - I'm really glad to hear that x It would be brilliant for us all. Especially our son. I really want them to see Ghostbusters together at the cinema.
@Disillusioned11 I'm so sorry for losing your Ex. Can I ask what cancer he had?
I think we are both in denial a bit. We have been offered Cancer are counselling.
@namechangenumber2 it really is naff.

I'm so nervous I feel physically sick and can't eat

A close relative was diagnosed last year out of the blue - his tumour was inoperable and aggressive. I highly recommend this organisation www.thebraincharity.org.uk/ they have a wonderful support section and their information packs are available to download. If you are on Facebook you can request to join their relatives' support page which was a godsend to me. Good luck x

OP,
So sorry.
You sound lovely.

Just because you are no longer "in love" with your ex, doesn't mean you can't still love him.

Explain that to your son.
Plenty of photos are a good idea during this time, especially on his good days.

I hope his treatment is a great success.

Sudden illness like this is devastating.

Wishing you well

I hope this doesn't cause offence, but I get the sense from your posts that you still have strong feelings for him. I can't tell if you still love him romantically, or just as a very dear friend. Either way, it sounds to me like you could do with some support for your own feelings, and your own grief. The national organisations quoted so far are a good start but you may also want to look into local services which can help not just your ex and son, but also you. The better supported you are, the more you can be there for your son.

As a doctor I signpost bereaved children and their families to Winston's Wish - they are a childhood bereavement charity and people speak very highly of them. Their website talks about supporting children and young people, so I'd hope they might be able to support your son.

My husband lost his first wife to severe brain injury from a car crash. His children have had therapy and I know he still sometimes misses her too, but they have all gone through it and he has wonderful kids and we are happy together as well. I hope your ex survives but if the worst happens you and your son can survive this x

So sorry op, I wish there was something I could say to help

@LockdownLoppy I am so sorry for your loss. I will have a look and join later tonight's :) thank you.
@namechange2 hrm.pass. pleading the 5th (the right to not self incriminate) you're a smart cookie. I will look into counselling.
@CathyTre I'm glad he has found happiness with you. I'm glad they are ok
@AlpaccaGoodnight Thank you. Im more worried about my son. It will floor him.

Sorry, me again.

Not sure how close you are to his new partner (if there is one) but one of the best pieces of advice I got early on was from a relative I met in hospital. It was to set up a power of attorney. It was an absolute godsend. It meant when DSis started to lose capacity I could make decisions on her behalf without any quibble. So I could liaise with the council over her house, the student bursary people for her children and also be part of the decision making over care (as opposed to being included in discussions). I could also manage her money and make sure bills were paid etc.

Most of these people would not talk to me until I said the magic words "I have legal power of attorney". So much easier.

Noone else. No other children (him) . Just our son. That does sound good advice.

My son and I are just willing him to live. It was lovely to see him yesterday. He even managed a few words. I can't bear to think of life without him.

I’m so sorry. Try to find help with how you tell your ds about his dad. The hospital should be able to point you in the right direction & there will be information & support online.

Of course YANBU. I’m so sorry x