DP brain tumour. Where do we start?

[Pistachiochiochio]

Total shock - last week we thought DP might have started having migraines. Yesterday told he has a brain tumour, probably cancerous. Just been admitted to the neuro ward. I don't know what I'm looking for really, maybe a place to be able to listen and talk.

We have a 6mo baby and no family nearby.

Sorry this is happening he is getting the help he needs. Reach it to the brain trust and macmillan. I'm sure someone with experience will come along soon

I am so sorry that you're having to deal with this. Let people know and take any help that is offered.

Oh that's awful. I'm so sorry and really hope there's a good outcome.

I’m so sorry OP. Unfortunately I’ve been there with my DP - glioblastoma. Until they’ve completed a biopsy you will be in limbo. Most brain tumours are benign so hold on to that.

Do you have critical illness cover? If so make a claim.

My dad had a brain tumour - GBM. He had a biopsy which needed a couple of nights stay in hospital. The results took 3 weeks.

Thank you all. It just feels like I'm in a play or something, not our life.

I'm so thankful I'm on mat leave not working just now.

He is only 44.

I hadn't realised biopsy results take 3 weeks! It sounded as though there might be possibility of operating today. He's since been allowed lunch but has to monitor fluid intake?

Tumour is 3-4cm. Waiting for docs to come and tell us the plan.

Dear Pistachiochiochio

Whatever the outcome you will be ok, you need to be ok, you need to carry on.

Just a little over 2 years ago my then 25 year old son suffered a seizure whilst out (always been well and had never had a seizure before). Turns out only a few earlier a GMB4 had started to grow.

He had a craniotomy, 6 weeks of daily radio/chemo and then 6 months of chemo - 5 days out of every month.

He had stable scan results up until April of this year and the bastard had started to grow again. Another craniotomy and this week he will start 2/6 chemo. Scans have gone back to every 3 months instead of 6.

People ask me how I can talk so normally about it, but you have to (yes I did cry a hell of a lot and I did cry when people asked me how my boys were and I had to tell them one had a terminal illness).

Honestly, we have done some wonderful bucket list things and consider it a gift that we are his parents. He has not once moaned about the tumour, not being able to drive anymore, operations and treatment. We are proud to call him our son.

You will be allocated a MacMillan nurse and most likely a specialist social worker. Our social worker filled out the necessary forms for us for PIP and a blue badge. They are there to help you.

Please don't hesitate to message me.

Sending you all my love xx

*weeks earlier

I’m sorry to hear your news. It is scary and especially at the beginning before you have the full facts and treatment options.

My DD was diagnosed with a brain tumour 5 years ago and went through chemo and proton beam therapy and we are just about to celebrate 5 years since she finished treatment.

Get in touch with Brainstrust. They are a fantastic charity and will offer support and advice as you go through this.

Sending love to you all.

You are all so kind.

It looks like an op early next week. Dp is leaning towards resection while awake.

My son was awake the first time.

Your lovely DH will probably see occupational therapists before the op as they will need to get base line tests done.

Due to where Jack’s tumour was the occ therapist also saw him directly before theatre and during the awake period as he had to go through the tests whilst the surgeon literally took bit by bit of the tumour, due to location Jack could have been left paralysed.

Keep talking on here xx

I’m so sorry OP. Please share with us if you feel comfortable so you have somewhere to vent. Must be very stressful.

Hi OP, I'm so sorry you are going through this and wanted to offer a handhold. My DP had surgery for a 4cm brain tumour in his thirties. Thankfully benign in his case.

Crossing everything for a positive outcome for your DP - sounds like the docs are moving quickly on it which is a good thing. The wait for histology results is awful though, for my DP they didn't do a biopsy, they took the whole thing out then sent it for cancer testing afterwards.

We've both told a few people in real life now and I've been bowled over in particular by how kind and eager to help people have been (including mums I've just met since being on mat leave, some just a couple of weeks ago).

I'm thinking I need to set up a couple of WhatsApp groups (and invite via link rather than just add people) to manage

1. updates on DP's condition so we don't have to type/copy/paste 100 times
2. requests for help And then a calendar and maybe spreadsheet or something to keep track of visitors, meals, babysitting, etc. So that I can manage the logistics to allow DP time to rest and heal etc but also not burnout. Plus a guide for visitors with info like how to get to the ward, warning that there's no loo or water fountain for visitors there (like a grim Welcome pack/joining Instructions)

Obviously I have to think through finances. We have to liaise with our employers, at some point (after we have biopsy resylts and medical plan) think about what happens after my mat leave but not yet.

Just woke up in a sweat. And then started thinking about what I do for our son - photos and videos of him with his dad etc.

Stuff to allow DP and I to do "normal" things together like a headphones splitter for tablet so we can watch a TV programme together in hospital.

Might look for/start a thread on practical stuff like that. Very interested in any tips.

I was already linked into the perinatal mental health team so had an hour yesterday with the psychologist alreadyscheduled. The plan was for me to do EMDR for my existing anxiety. I think now is not the right time but I don't want to lose sight of that, I'm going to need to invest in my mental health recovery.

That was a massive brain dump sorry.

questions - noone mentioned lymph nodes but the scans so far show brain tumour is primary and no other tumour sites/it hasn't spread. Do I need to ask about lymph nodes?

Am I likely to be able to see him on the day of the op?

I don’t think you need to ask about lymph nodes. Forgive me if I am wrong but brain tumours don’t spread to other body parts. The consultant will probably ask DH if he wants a prognosis. They can only give a median timeline as everyone is different. We were told 12-15 months. Please don’t be disheartened.

Setting up of WhatsApp groups is a great idea. We have one for all of DS1’s friends although DS1 isn’t party to it. Don’t worry about other people and how they will get to the ward etc, you have enough on your plate. They can find that out themselves.

I wouldn’t focus too much on what you can do together in hospital, He will be very tired. Physio and occupational therapists will be in and out to see him every day.

We stayed with DS1 until he went to theatre. Both times we had to be at the hospital for 7am so we had a hotel booked nearby for the night before. We live in York and his care is at the LGI.

Maybe after DH has had his op and after treatment you could get him to write some future birthday cards out for your son.

You need to look after yourself too in all of this, it is exhausting. Try and do “normal” things for yourself.

xx

Sorry, forgot to say we were allowed to see DS1 both times after he came back from theatre despite it being very late evening.

Sorry just thought about something else…

Lasting Power of Attorney (health) and POA (financial) I would get these sorted asap as once submitted they will take 20 weeks plus to become live. You don’t want to find yourself in the situation of no access to anything. If you haven’t already, I would also get a will done.

To manage communications and requests for help, look at the website www.lotsahelpinghands.com. It allows you to centralise everything in one place. If there is someone sensible you trust, see if they will help by setting it up and managing it for you.

this is a marathon, not a sprint. Dont forget to look after yourself as well as DH

hugs

Can I gently suggest you don’t set up the WhatsApp’s? You don’t need to be having loads of messages constantly and another job to do. A text can be sent re the Ward place; do you want lots of people visiting when he’ll feel awful and you’ll want time uninterrupted? Do you need lots of people involvement in babysitting and meals? Would 2-3 people work better and they can sort it out amongst themselves?

Do you want everyone to know every update and for you to be responsible for sharing everything? It could go on months. What if you forget something? Or just want a break? Will every single person on there have helpful comments?

i think I would tell my mum or sister or his mum the updates & let them share on. I couldn’t be doing with well meaning friends and family constantly hearing updates and passing comments.

im so sorry for your sad news

So so sorry for your news OP, what a terrible shock. I have a 10 month old and I know what a fantastic but challenging time it is finding your feet as new parents, without this added shock.

No experience of brain tumours but plenty of experience of being in hospital for other reasons when my son was a new born. I would advise right at this moment to slow down, and take your time.

You don’t know much yet - many brain tumours are benign (praying this one is!). It’s so easy to rush to planning, but wait until you have some more information and take care of the three of you for the next few days. Do the things that will make you all comfortable while you’re in hospital until the next step. Outsource as much as you can - but try to only have a few points of contact.

agree with a PP - a mass WhatsApp might not be helpful for you to manage at this stage. Thinking of all the replies to manage would have really stressed me out. Farm out responsibility for communications to someone else and don’t feel like you need to reply to everyone who messages instantly. They will understand!

You can set up broadcast only WhatsApp groups which are ideal for this. You provide updates, other than emoji acknowledgement the other members cannot reply. A very good way to share difficult news once and done.

So sorry OP, sending a hand hold x

Thanks again for taking the time to respond.

Tuesday was the worst day of my life. Then Wednesday was worse. Somehow Friday and Saturday weren't worse. Yesterday was actually... quite nice? DP friends and family visited. And while they were with him one of my best friends came to meet me and the baby. I got to spend more time in the park than in the sodding windowless visitors room or hospital corridors (I know I'm going to have to get comfortable with spending time there!).
But the sun was shining and the surgeons have made DP feel really confident about the op. And he found it restorative to see F& F.

Absolutely not in any way near the end or even the end of the beginning. But the horrific shock has receded a bit i think. Fully expect it to be back on next week when my mum has gone and DP's lovely hair has been shaved off and I still haven't slept properly.

In a bit of limbo in terms of marshaling babysitting support etc as not sure what i will need after the op this week.

The thing I mostly need is my baby to take to Solids better than he has. But he's now taking big feeds overnight, back to suckling to sleep, and i really need him to take some calories from someone other than me (he's a bottle refuser).

I’m so sorry you’re going through this. My best friend was diagnosed 2 years ago when she was 32. Brain tumour’s unfortunately affect younger people.
They can usually tell from the scans what type it is. They could in her case and this was confirmed with the biopsy results.
Surgery could only remove a portion, which is common.
Personality changes are fairly common as is fatigue. There is a carers support group on Facebook run by the brain tumour charity. I’d recommend joining.

I’m sorry you’re going through this.

i’d also recommend the Brain Tumour Charity - they have provided myself and my husband with online therapy sessions (separately) and I find the Facebook group for carers really helpful (though be warned that some of the situations there are harrowing).

my children are older but Winston’s wish have been really helpful with advice about our children (I contacted them once we had the terminal diagnosis - hopefully you won’t need this).

I personally think a WhatsApp is a good idea - the information gets out in one go, everyone has the same info etc. so long as there is no expectation for you to reply to questions. My husband found messages of support on Facebook and WhatsApp really helpful.

if you have one, the Maggie’s centres are brilliant. If only for a calm space to collect your thoughts. They helped my husband with benefits and the disabled parking badge (which he has but doesn’t need yet thankfully). After an appointment or while waiting for a prescription we usually still pop in. They’ll offer you a cup of tea and have lots of useful booklets and there’s volunteers to chat through things. We haven’t been offered a macmillon nurse or social worker (someone up thread mentioned this) but Maggie’s have filled that gap.

yes to wills and POA - I recommend getting it sorted earlier then you can forget about it. We had wills already but DH has put off the POA as he hates thinking about it (and this is stressing me out!) but he would have found it easier at the start I think.

one last thing - don’t be alarmed by personality changes immediately after the biopsy - your DH will probably be given steroids and they can cause mood changes etc. the two weeks after my husband came home were quite challenging but he returned to himself once the dose decreased.

oh, and thank you to the poster you shared the care calendar thing - we might use that! When DH was going for daily radiotherapy we had about 20 different people helping with lifts (as well as a local charity) and it would have been brilliant for that.

There is a wealth of information on the Brain Tumour Charity website. https://www.thebraintumourcharity.org

Once you get the diagnosis of what kind of tumour it is and the location, you will get a treatment and care plan. (My sister was also 44 at diagnosis) We were assigned a neuro-oncology nurse that we could call at any time. She always called back - sometimes weekends or evenings. She was a tremendous support not just for DiSs but also for her two young teenage children. Same with the MacMillan nurse - she was fantastic. DSis passed away 5 years after diagnosis; a friend diagnosed with the same type of tumour (oligodendroglioma)at the same time remains very fit and healthy.

The treatment is gruelling; not just for the patient but also for the family. DSis recovered remarkably quickly from the surgery - she was up and walking within a couple of days. The radiotherapy and chemotherapy were more challenging.

There might be some practical things to sort out as early as possible. As a previous poster said - a POA will help you advocate for your DH and makes the whole form filling nonsense so much easier. DSis found it difficult to manage stairs due to neuropathy form the radiotherapy so I had a downstairs study converted to an ensuite room.

Prepare the family for the mood swings and personality changes- this was particularly difficult for her DCs.

Make time for you in this. Eat well, treat yourself, allow yourself to be sad or angry or whatever. Accept as much help as you need. Wishing you all the best and hope there's a good outcome for you all.