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

(55 Posts)
Abbazed Mon 15-Jun-20 15:10:02

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.

OP’s posts: |
DontTouchTheMoustache Mon 15-Jun-20 15:11:02

I'm so sorry to hear that op, that must be terrible for you and your son flowers

Hugglespuffed Mon 15-Jun-20 15:11:35

Of course you are not being unreasonable, I dont think anyone would think you are.
I hope he is OK.

Elieza Mon 15-Jun-20 15:13:38

That’s horrible for him and frightening for all of you. I hope they can do something. My mums friend just got one removed. It’s off being tested just now to see whether it’s malignant or not. Scary times.
flowers

Splodge1506 Mon 15-Jun-20 15:20:31

I'm so sorry. If this were my ex, I'd feel like this too (one of my children once said, "I think if Dad died you would be more upset than [stepmother]").

You don't just forget what made you love someone in the first place.
flowers

ShebaShimmyShake Mon 15-Jun-20 15:23:32

Just because your relationship ended doesn't mean you don't care for him or never did, or that you don't care about the effect on your child. I'm so sorry to hear this.

BreatheAndFocus Mon 15-Jun-20 15:40:20

I just wanted to send you a hug flowers

I hope your ex is ok. XXX

Nandakanda Mon 15-Jun-20 15:55:05

It's really nice that you care.

FubbyChucker Mon 15-Jun-20 15:58:10

So sorry OP flowers

chockaholic72 Mon 15-Jun-20 16:25:10

You can't control it. You can control being a good mum and being a good Ex. There's nothing stopping you from caring for your son and being there for him, taking as much worry away from your ex as you can, so that he can concentrate on trying to get better. No time to hold grudges, or argue - he will always be part of your family because he's the father of your son; just try and be there for them both. Sending you a big big hug.

backseatcookers Mon 15-Jun-20 16:49:49

Fuck, I'm so sorry OP thanks

Abbazed Mon 15-Jun-20 16:50:21

It's the things he can't do that scare me. He can't talk, he can't stand the daylight, he can't stay calm. His op is next week and I googled his brain tumour grade 3 and the hospital it's at and read a story about a man who had same and had neurosurgery then 4 days later they regraded to 4 which is terminal.

I honestly don't think he has long left. My son has one friend and he's really close to his Dad.

OP’s posts: |
Abbazed Mon 15-Jun-20 16:53:17

Thank you for all your kind replies. Ex is single and lives alone. I met him at Salesian Youth club when I was 12 and quite a big girl. I didn't have many friends. We used to play chess and other board games. I can't imagine life without him sad

Worst part is he collapsed alone in the street and strangers called the ambulance. I moved an hour away for work. I wish I'd been in town.

OP’s posts: |
Abbazed Mon 15-Jun-20 16:55:13

We can't visit as Cumbrian hospitals aren't allowing visitors because of Covid 19 and high death toll around here.

My son is going to be devastated and fuck seems a good answer.

OP’s posts: |
Abbazed Mon 15-Jun-20 16:55:25

Thank you for your replies x

OP’s posts: |
lowlandLucky Mon 15-Jun-20 17:03:46

flowers

SnuggyBuggy Mon 15-Jun-20 17:34:52

Only a heartless person would vote YABU. Sounds like a horrible situation

clarepetal Mon 15-Jun-20 17:42:33

How devastating for you daffodil

LonginesPrime Mon 15-Jun-20 17:43:28

Sorry to hear that, OP. thanks

I would look at getting some counselling/support for yourself so you have an outlet separate from everything that's going on.

You obviously will need to be strong to support DS and your ex, and on the basis of "comfort in, dump out" (Ring Theory), it's important that you're looking after your own emotions too (and addressing your fears and worries, etc) outside of supporting them.

HellSmith Mon 15-Jun-20 17:55:09

Call MACMILLAN 0808 808 00 00 Mon-Fri 9am-8pm. Or use their website for support. Don’t google. I hope you get to see & support your ex at this time, there has to be a way.

icansmellburningleaves Mon 15-Jun-20 18:06:13

I’m so sorry to hear this. Absolutely awful news. 💐

Nartl0ngNow Mon 15-Jun-20 18:21:55

There are certain exemptions on visiting. I would ring the ward to confirm due to his condition.
Alternatively they maybe offering video chats which will be very hard if he cannot speak etc.

Abbazed Mon 15-Jun-20 18:27:11

Thank you for all your kind replies. I've bought T some ear defenders as he can't stand noise. I've also got face mask and eye mask He's in constant excruciating pain. He has to wear sunglasses all day.

It's my son that I feel for. The one thing he wanted to do after lockdown was see his Daddy :'( my heart is breaking. My little boy will be shattered if he passes.

OP’s posts: |
Abbazed Mon 15-Jun-20 18:30:15

That's a good idea. I didn't know there were exceptions to visiting.

I'm a bit frightened about visiting our local hospitals as Grandma's brother went to visit a friend at FGH and caught Covid 19 and passed away. He was only 80 and in fair health.

The hospital he's going to is getting an utter pasting by Covid 19. I've friends who work at the hospital and it's fantastic but a lot of cases.

OP’s posts: |
OllyBJolly Mon 15-Jun-20 18:31:30

so sorry to hear this. Lost my sister to a brain tumour last year. Her XH was very supportive, especially with the children. In fact, his whole family were great. Don't read any further unless you want to know my experience.

One of the first impacts was "cognitive impairment" - their term. This meant she developed very poor concentration and short term memory. I went to every appointment with her. The consultant said the grade of brain tumour is almost immaterial - it's the location and rate of growth that they monitor. She was grade 2, but quickly developed 2 new grade 3 tumours.

The surgery went well. They debulked two of the grade 3 tumours significantly (can't remove brain tumours completely as that would mean removing brain tissue apparently) but couldn't touch the first because of its location. Prior to surgery she was having many fits each day and had tremors down one side. These immediately stopped and she recovered total mobility in her left arm and leg. It was amazing. But she still had the three tumours.

There is a gene they test for that determines if treatment is likely to work. Sadly she didn't have it. She had a debilitating course of radiotherapy followed by chemo. With hindsight, we probably shouldn't have gone ahead with it knowing it was unlikely to work. The radiotherapy was painful and led to numbness which affected her mobility with the result we had to get a wheelchair. It also affected her eyesight beyond correction with glasses. She gave up on the chemo after the second round - she was so sick and contracted sepsis. The advice was it wasn't helping.

She deteriorated quite slowly. She had quite significant personality changes - from being very social and friendly she became very aggressive. She was very nasty to her children (young teens). She picked arguments with everybody. This is common in brain tumour patients. The drugs made her very sleepy - she could sleep for hours then be wide awake during the night.

The Brain Tumour Charity has lots of helpful advice. I found the McMillan nurse to be tremendously supportive - as was the neuro-oncology nurse. There was also a Maggie's Centre and support groups but as she lived very rurally and couldn't use transport on her own (I live 200 miles from their home) then she couldn't use them.

OP, if you're still reading, I'd do the research so you know what to expect so you can support your son, but also yourself. It's devastating news. It's a cruel, bastard of a disease. Take care of you.

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