Brain Tumour

[TheTwitsinTumourForm]

Diagnosed a few weeks ago in my mid thirties. I feel so incredibly alone and isolated and I am an emotional wreck.

Do things get better emotions wise as it’s impacting everything. I am dog tired ALL THE TIME. I cannot seem to get sleep that equates to restful sleep to my body.

Symptoms have been there for over a year, and I have emails raising that I was worried I had a brain tumour and the replies telling me it was just anxiety and I needed to sit with difficult emotions.

I have an appointment with a neurosurgeon on Monday and have this overwhelming feeling that my mental health diagnoses are going to mean I am not taken seriously.

Does anyone have an experience or advice please?

Didn’t want to read and run but I’m so sorry.

I can’t give much advice other than your point about not being taken seriously - you obviously haven’t in the past and that’s not okay - but on Monday make sure you don’t take no for an answer and advocate for yourself. I’m sure it will be different as I’d assume by this point you have scans etc which have cold hard facts?

Is there anyone who may be able to go with you for support and advocate for you if you need?

Thank you for the reply. It is very much appreciated.

Yes, it’s been seen on scans - for several years in fact. It’s a bit complicated but they have now realised it is a brain tumour and gone back over all the previous scans and it’s always been there.

I can’t really deal with all that right now, I just need some help with the symptoms and some support (I had a horrible discharge from a mental health team when it was realised I had a brain tumour and I’m too complex for my local teams, and not suicidal for the Crisis Team (who discharged me two hours after I was diagnosed)). It was the Crisis Team who listened and arranged an urgent scan to be fair to them.

I am trying to write a list of questions but I have no idea what to actually ask as I am such a mess and so tired.

I think I just want to know there’s a plan being made rather than people covering up their mistakes and silencing me.

Hi OP. I'm so sorry for your news. My dad has a brain tumour (a meningioma) - do you know what yours is / what they think it is? My dad's was a shock as initially we were told it was brain cancer (he had this weird seizure and that's how it was discovered). Luckily, dad's is a slow-growing menginioma, which is basically a calcified "lump" - his is about the size of a small egg. I'm really hoping that, if it's been on scans for years and years, then hopefully it won't be life threatening. Just sending you love and positive thoughts x

Hi OP my best friend was diagnosed about 2 years ago. Her symptoms were seizures. But she also suffered with extreme fatigue.
She had surgery last year and is now on watch and wait. She’s the same age as you.

Hers is an astrocytoma grade 2. I know she often feels very alone and that no one really ‘gets it’ she still has fatigue but has strategies to manage it now and is feeling much better. She is back at work now part time.
It’s such a devastating cancer to be diagnosed with, I completely understand how you are feeling. Which hospital will you be seen at? The surgeons were absolutely amazing with my friend. Once you have a diagnosis and treatment plan she found it easier to process and come to terms with it all. Not that it’s an easy thing. She’s also having counselling and psychotherapy through the hospital which helps.
Happy to chat or message if it helps. I’ve been there every step of the way with her. Sending lots of love and strength your way

Sorry to hear OP that sounds terrifying. But if you’ve had it several years presumably it’s slow growing and hopefully can be dealt with.
do you have a dp?

I'm so sorry to hear this OP. Do you know what kind of tumour it is or the location roughly, as that can make a big difference to treatment? Some brain tumors are cancerous, some are non cancerous, some have weird other effects as well.

On Monday if you can't take a friend or family member with you to advocate, ask if you can have someone on video call to support you and take notes. Write down your questions in advance (if you're anything like me you'll end up forgetting them all on the day otherwise!) And take a notebook to write down what they say, as when you're in shock from big news like this you can find it messes with your memory.

My husband was diagnosed last year after a seizure... was such a hard time and we think the tumor had been there for a long time.

Luckily he was able to have surgery and it's been removed... it's been a long journey but we hope it won't regrow.

We got a lot of support from here........

www.thebraintumourcharity.org/

I am so sorry to hear that you were not taken seriously for all this time. But now that the professionals are on board with what is wrong they will now begin to act appropriately and get a treatment plan in place for you.
I agree with other posters that if you can, please take someone with you for your appointments. Be ready with all your questions (write a list) and while you are there - ask for a letter outlining what was discussed following each appointment so you have a written record and can refer back to it.
It is so hard to remember everything that goes on when your head is mashed with shock and trying to absorb everything that is is happening let alone trying to understand medical terms.
It's sad to hear that you had a bad experience with your MH team but you may do better with Mind Matters (you can self refer) as their approach (to me) seems to be much more practical and tends to focus on you as a personable individual.

What awful shocking news, I'm so sorry

You should have some answers on Monday - ask for a nurse to stay with you, they're often able to explain things to you

And write down names of staff
Ask for a follow up letter explaining what you've been told

We'll all be here to hold your hand

Brainstrust have been absolutely amazing with my friend. She has a support worker who she can speak to any time about her worries. Also brain tumour charity have been good too. There’s a FB group with lots of people in the same situation though she found that very overwhelming in the beginning as obviously there are a lot of not very nice stories on there

I've known 4 people with brain tumours, 3 of them were operated on to remove them and went on to live normal lives (one has just died from old age at 92) and the other is my Mum who was diagnosed after a mini stroke 10 years ago, they discovered the tumour when she had a scan but said it isn't linked and that loads of people have tumours that are discovered when looking for other things and that hers, like yours, had been there for years and wouldn't require any treatment.

It's very scary been diagnosed with a brain tumour. I am hoping that as you have had it albeit without knowing for a long time that it's benign. I hope that's the news you ultimately receive. Lots of love

I hope that you are as ok as you can be and even if you feel alone you have some real life people to talk to as well as on here.

I wish I had some useful advice about your condition specifically but please don’t be afraid to complain loudly if needed until the hospital and doctors get you a treatment plan.

I would also look at joining a specific support group for your condition as they will have the experience to help you and guide you through this

https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/support-in-your-local-area/

I am so sorry you had this diagnosis and that you weren't taken seriously before now. I hope your appointment at the hospital went well and they can give you some reassurances.💐

My bestie had a brain tumour removed a few years ago. She is still the fabulous woman she always was! She says her concentration isn't the same. She does come out with a few odd expressions she never did use though! She is still her if that's your worry op.

Just wanted to check in and ask how your appointment went? Hope you’re doing ok

@TheTwitsinTumourForm how are you doing?