FIL just diagnosed with a brain tumour - now what?

[Onebabyandamadcat]

Last night we found out my wonderful FIL has a brain tumour. It's a grade 3/4 which I understand is not the type you want! Everything has moved so quickly - two weeks ago he had a weakness in his left hand and the Dr sent him for a scan. A few more scans and a biopsy later and here we are.

We don't have much more info, his drs are meeting today to discuss then I guess we'll get a plan.

Does anyone have any experience? What can we do to be helpful? My DM died of cancer when I was 13 so whilst I understand some of what's to come I was so young that I was shielded from the practicalities.

Also my DD (3)worships her papa - he's her favourite person in the world. How on earth do I explain this to her? When do I explain it - soon or when he's really ill?

Sorry for the rambling post, we're still in shock I think. DH is finally asleep after staring at random shows in the TV most of the night. We're also heading to the EPU at 9 for an early scan following two miscarriages this year. I've been feeling so positive about this pregnancy and now it feels like we're being given with one hand and having things snatched away with the other.

I'm sorry to hear about your FIL's diagnosis. Unfortunately I have experience of this as my DFather had (and died of) a grade 4 brain tumour a few years ago. His symptoms also started with weakness in his hand.
I told my DC (7&9) that DGrandpa's head was poorly and it meant that he couldn't use his arm (also his leg within a few months). We explained more to them as the time went on and were very honest about his prognosis and the fact that the doctors couldn't fix him.

@mrsfoof thank you for your response. I'm sorry to hear of your loss. Can I ask how quickly your dad's tumour progressed?

About 3 months to be diagnosed from first symptoms and 9 months from diagnosis until he died. He had chemo / radiotherapy but not surgery as it was inoperable.

@mrsfoof thank you

I'm so sorry to read this about your FIL. My Dad was diagnosed in Jan last year, we lost him 8 weeks later.

Sending love to your family.

@Onebabyandamadcat
I'm so very sorry to hear this.

My dd was only 5 when my mum died. We had lots of talk about Nanna and I was honest and open and her school were amazing too.

When my mum got her diagnosis (hers was cancer) the McMillan nurses were great and helped me a lot to prepare everyone including my elderly father and my daughter and have me support and signposted me to winstons wish. There's some useful stuff on here

www.winstonswish.org

A diagnosis is always a shock but once you know what the management plan is for your lovely father in law you can plan round it.

My heart ❤️ goes out to you x

@ginsparkles I'm so sorry for your loss. This situation is what I'm scared of - having no time.

@Onebabyandamadcat we were told fairly quickly that it wasn't treatable, and that whilst they couldn't give a time frame he likely wouldn't see his next birthday which would have been 9 months on from the diagnosis.

Hopefully after the biopsy you'll get better news than we did.

DD was 8 at the time, we told her the her grandad was poorly, that he had cancer and that we wasn't going to get better. He didn't live close by so we made arrangements to see him as often as we could, we saw him 3 times before he died, and DD saw him get a little worse but we never saw him really unwell. That only happened in the two or three days before he passed, he asked his partner not to invite us down, he didn't want us to remember him that way.

I hope you get more time than we did. PM me any time

I'm so sorry OP

You might have time - my dad was diagnosed with a grade 4 tumour, but it was operable and with chemo/radiotherapy and a couple of other ops he survived for 3 1/2 years after diagnosis, and after the initial recovery he had a good year or two before it took hold again.

Thank you everyone. Just need to keep our fingers crossed. Drs are meeting today so hopefully in the next day or so we'll have a better idea of what he's facing.

When my dad was diagnosed they gave him 8 weeks and he managed 6.5 before he died so try to make the most of your time, these things often move quickly.

My DH49 was diagnosed in early May with GBM4. Ended up in A&E at the end of April thinking he had had a stroke. He has had 2 operations so far and has started 6 weeks of radio/chemo this week. However, he has lost function of his left hand (initial tumour was pressing on his motor strip), they did a CT scan this afternoon and the notes the doctor on duty wrote are very worrying. He is waiting to speak to his consultant tomorrow to clarify. The bastard GBM4 moves at an astonishing speed and takes no prisoners. 🙁 His initial prognosis was 2 years, however, despite the initial debulking op (1st op) which removed all of it, plus a supermargin, it seems nothing can stop the f* growing. We also have DS10 who is growing increasingly angry & distressed due to all this. 😢

So sorry you find yourself in this awful place. I never knew it existed until I joined the club. I feel trapped in an utter shorty nightmare. Brain Tumour Charity have got useful info on their website. Also, Maggie’s Centre in your area (if there is one) is with exploring. Sending you strength.

Shitty, not shorty!

Thank you everyone. Drs met and he has glioma. His notes say M1 but also that it has grown in the ten days between his scans which makes me think he's noted that down wrong. It's too deep in the brain to remove without paralysis so surgery isn't an option. He's to get three weeks radiotherapy and chemotherapy starting in three weeks (I'm not sure why the delay).

Everyone else is talking about how this is something they'll treat and he'll live with. My in laws are not good at talking openly with each other or asking questions - they didn't ask the Dr whether it was terminal or for timescales or anything! I've looked up some journals and other info and all I'm seeing is really bad news about a tumour that moves quickly and people are lucky to get 9 months. I'm finding it hard to bite my tongue and also struggling with whether I should even be biting my tongue. It's the sort of thing that you only get one chance to do right but if they're all still talking about years and living with it I'm scared they'll sleepwalk into a nightmare.

How is he doing now? My mum had the same and unfortunately she was less than 6 months from diagnosis to death. She also didn't know who I was at the end which was really hard, so just to (sadly) prepare your DH for that.
I hope that your scan went well x

My dad died of a Glioblastoma (Grade 4) when I was 9 weeks pregnant so I have an idea of how difficult it must be for you right now. Good luck with your scans and pregnancy.

He was given a prognosis of 9-13 months, had surgery where he was told he had a 10% chance of paralysis, sadly he was that 1 in 10, so was significantly disabled and utterly miserable. He breezed through the radiotherapy (with low dose tablet chemo alongside). Had one round of post radiotherapy higher dose chemo which was meant to be 6 rounds every 4 weeks. He was rough the week be had it, sick as a dog the next week, exhausted the week after and then had one okay week. We supported him in making the decision not to have any more, but he felt awkward making that decision and was concerned (extended) family would judge him.

The reality is there are no good outcomes with glioblastoma. So empower your FIL to make the best decisions for him, and don't allow anyone, family or medical professionals to pressure him down a route of quantity of life over quality, unless of course that is your FILs wishes.

Oh and finally the best few weeks we all had together was just after my dad's diagnosis when the steroids had really kicked in, he was better than he had been for months his surgery then got knocked back a couple of times (blood pressure and lack of beds) so we were actually lucky to get a bit of extra time then. Enjoy those days and try to make the most of this summer.

Just realised after I pressed post that the diagnosis was a nearly a month ago. I hope you were all able to make the most of the good weather, and that your pregnancy is progressing well. x

@Onebabyandamadcat

I'm so very sorry to be reading this;

My mum had bowel cancer (not quite the same) but was stage 4 at diagnosis so had less than 6 months from her diagnosis.

We had my mum at home and had support from hospice at home and the McMillan nurses were amazing not just for Mum but all of us and helped my children too - I'd highly recommend their help. They're angels

I hope your pregnancy is going ok too - it's such a sad time but hopefully the expected arrival will bring you some happiness through the upset xx

Hi everyone. Thanks so much for your experiences and support. My pregnancy is going well - had my 12 week scan on Wednesday and baby is looking good.

My FIL is home now. He's had one lot of tablet chemo after they said radiotherapy wasn't an option. Just doing my best to support him and my MIL the best I can. It's complicated by the fact that they don't grasp the seriousness of the diagnosis. FIL is talking about moving house and making plans for next summer while MIL keeps saying he's got 2/3 years. They've been told everything but don't seem to take any of the negative in and latch onto any small positives they can. I'm under no illusions - I know we'll be lucky to get to Christmas - but it's hard to make plans for the now when they keep putting things off for "when he can walk again"

Just trying to help in any way I can and support them and DH and his brothers. Think we've got a very bumpy few months ahead of us.

Hi everyone just adding to this thread in the hope there might be some practical tips out there. FIL was told on Tuesday that there's no more treatment options, he's on palliative care. The speed of this tumour is terrifying - he now needs a hoist to move him as he is so weak on one side. His speech has changed and last week he couldn't remember the words to happy birthday when we did DDs birthday cake.

We've got carers three times a day now to help and the Dr is contacting Macmillan. FIL didn't want a time frame but I'm guessing we're talking weeks not months. My head is all over the place (baby brain isn't helping - 24 weeks today!). Does anyone have any practical tips or suggestions of what to do now to make things easier- people to contact, things to start to get in order and stuff?

How are you doing op. And how is your FIL?

thank you for the updates. I hope your FIL is comfortable. x

My FIL is deteriorating quickly. He's now getting weaker on this right side and swallowing is difficult. My MIL doesn't want to accept the reality and neither do my BILs. DH and I are trying to have conversations about maybe looking at hospice care or getting Macmillan nurses in but are being met with resistance.

He now needs a hoist but even that is now being questioned as he doesn't seem to have the core strength to hold himself up so bed care is being discussed.

It's just horrible how quickly this is progressing and you can see him getting sicker by the day. He needed to sign some paperwork yesterday but couldn't hold the pen to do it (and MIL is aghast that I might "assist" as it was "a legal document" 🙄) and he couldn't remember the words to happy birthday a few weeks ago when it was DDs birthday.

I've no idea how long he's got left and he and MIL are refusing to ask or discuss it. Does anyone have any insights? I'm guessing if he's declined this quickly he doesn't have long. Not wishing him away, just trying to prepare people who are making plans to buy a modified car for him and making Christmas dinner plans whereas I'm thinking he won't see the end of the month.

Has he got power of attorney in place? That’s something I’d be getting in place very quickly if not. It’s almost impossible to say the speed of things, but understand people wanting to cling on to a future with him in it.

POA, make sure wills are watertight etc, no to the car at the moment, contact local hospice for any kind of respite day care, read up on palliative care such as syringe drivers and end of life signs so you are prepared.