Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

2 weeks since hospital admission & my partner has Been told of his brain tumour. Its inoperable & nothing else. What can we do next

Debbie P
Posted by

My partner was admitted by ambulance on 19th August with sudden loss on left side. Couldn't weight bear.  No other symptoms.  By the evening of 21st after MRI & CAT & PIT scans we knew it was a brain tumour. Its 4.5cm right in the middle, intact & no other area affected.  & since then nothing. The nearest neurosurgical hosp is only 18 miles from here & promised meetings, transfers as an inpatient,  out patients appointments, have all came to nothing.  Meanwhile he is no medication. But his mobility is deteriorating quickly in the left side. Very bad walking,  standing etc even with Zimmer & can't hold cutlery etc. Today is 1st Sept & he is deteriorating quickly in front of our eyes. Yest (his birthday) we were told there would be no op, or biopsy.    No reason or mention of any treatment plan & the doctor said that he tried several times to get through to this neurological hosp for answers of why (the registrar at the neurological hospital had seemingly just advised ward staff in a phone call on Thursday evening)  but he got nowhere and of course nothing more will be done until Monday.  I could scream at everyone. My poor partner keeps saying they are leaving me to die. What can we do next.  NOW.   Thank you for reading this.     X

Arla
Posted by

Hi Debbie,

im really sorry that you are both going through such a tough time and don't have any support. I would suggest calling the Macmillan helpline on Monday after 9am on 0808 808 0000. 

Id also try and find out who your husbands consultants are for each aspect of his care, then find contacts for their secretary, they usually have access to information about what's happening. Your husband should also have a Clinical Nurse Specialist who should be able to help you with anything you need, from medical to practical information and next steps. They can also help direct you to financial and emotional help if you need it. 

Keep phoning and keep asking questions until you have a treatment plan or at least know when one will be confirmed.

i had womb cancer so I don't know anything about the brain but my experience was that I was diagnosed in June and had surgery in August, if I'd needed chemo or radiotherapy it would have been a few weeks after my op, sadly things don't seem to move at pace, I sped things along by keeping regular contact with the hospital and offering to take cancellations. 

If all of your husbands tests and scans are back they might just be waiting on his multi disciplinary team agreeing on a treatment plan. 

Whilst you wait for Monday, you should be able to access an out of hours Team through your local authority social services department or district nurses if you need any equipment or medical help, or you can call 111 for advice or pitch up back at a and e.

if you reply to me would you mind tagging me, I'm not receiving email notifications, you just type @ then start typing my name and a list should come up where you can select me, hopefully I'll be notified that way.

lots of love 

xxx

TomsMum
Posted by

Hi Debbie

I'm so sorry you are going through this. I had few answers when my Mum became ill and the waiting is awful. We finally got an oncologist who was helpful. 

I'd say, only from my experience (I'm in no way medical) that your partner should be on steroids and anti seizure drugs. We got the steroids straight away for Mum and they helped reduce the swelling around the tumour (which was S left side?). This improved her speech and balance etc. 

The anti seizure is called Keppra, she didn't have this for a few weeks and wish we'd asked sooner. 

I don't understand why your partner hasn't been given steroids, it could of course be because of the positioning I suppose, but I'd definitely ask.

Keep pressing for answers, I know it's difficult when you are so in the dark. 

X

TomsMum
Posted by

Ps from experience they will need to have an MDT meeting, which in our hospital took place on a Friday. Like you it took two weeks and I was climbing the walls. 

Ring the hospital tomorrow morning, and keep going until you get an answer. Keep us posted x

Debbie P
Posted by

Hi Tomsmum   thank you for your reply.   We did ask for steroids early on,  but were told that he isn't suitable for this as there is no swelling in  the brain and to put him on steroids could affect the little mobilty that he has. Speech is unafected, but he now cant hold anything correctly in the left hand. E.g. looks very puzzled like just doesn't know what to do. It's happening so quickly.  We will mention this drug though at a meeting at the hospital tomorro.    Thank you for your thoughts and advice.     X

Hopeful mum
Posted by

This is awful. Please do not give up hope and keep on at doc and neurosurgeon for answers. I wish you all the luck in the world. It's a stressful enough time being in limbo between consultations and results without having to find to get them as well xx

Please keep us updated xx

Amanda
Hopeful mum
Posted by

This is awful. Please do not give up hope and keep on at doc and neurosurgeon for answers. I wish you all the luck in the world. It's a stressful enough time being in limbo between consultations and results without having to find to get them as well xx

Please keep us updated xx

Amanda
Debbie P
Posted by

Hi Tom's mum, he is in our local general hospital & the hospital that specialises in neuorology is 18 miles away and the MDT meeting took place there last Wednesday 29th. On thurs evening they advised nursing staff in my husband's ward that he wasn't suitable for surgery or a procedure like a biopsy, no reason why,  no advise,  nothing.  Just not suitable. Duty doctor at the general hospital has advised that he spent Friday trying to reach the neurologist involved to no avail,  then of course nobody available over the weekend & will try again on Monday.  It's very VERY difficult to keep calm in these circumstances.  I am actually just back from hospital & he now can't stand at all,  even with an aid and no use whatsoever with his left hand. I'm at my wits end

Debbie P
Posted by

Thank you so much for your comments and kind words. I'm defo not giving up.   X

TracyP
Posted by

Hi Debbie P

I'm sorry to hear that you are going through such a horrible time trying to get some answers. If I've understood correctly then he is not yet on a specialist ward and that could be part of the breakdown in communication. Can I suggest you contact PALS (Patient Advice and Liaison Service) at the hospital ( I think all hospitals have them) and explain  the situation to them, that the ward staff have not been able to track down the neurologist concerned (have you spoken with him/he)r?, that you don't know what his happening. They might be able to get someone from the neuro team to get in touch with you more quickly. 

Good luck and keep in touch. 

Tracy