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Terrified about the results of my husbands brain tumour biopsy

Lost abroad
Posted by

Hello im here because im totally lost and overfaced. I live in deepest darkest France and i can’t find anything similar in French and to be totally honest my French is not up to explaining or dealing with what im feeling.

My husband of 20 years has just been diagnosed with a brain tumour ... the MRI showed up a 4.5cm irregular tumour in the middle of his brain across the midline, that goes deep(sorry if the terms aren’t right). The dr suspects it has been there less than 3 months .

At the moment we are in a weird no mans land of a situation trying to carry on with normal day to day whilst waiting for the biopsy results on Wednesday- that’s when he will find out what it is and what treatment options are available - 3 weeks to the day that i took him in to hospital.

He seems totally fine in fact if you didn’t know i don’t think you would necessarily pick up on the fact there is anything wrong. He is tired and forgetful but thats it, deceptively normal ... the steroids have helped reduce the swelling apparently, so he is much less distressed than in hospital the first few days when he didn’t know where he was or why he was there. Each time he was told it came as a shock and he wept like a frightened young boy. Hes 54. 

The surgeon has told me she is ‘very very very ‘ worried and can’t really understand how he has managed to keep functioning- but won’t say more than that, yet.

this sounds awful but im terrified about how to cope on Wednesday to support T if it is bad news ? (Yes I’ve stupidly looked on google at ´fast growing´ and tried to find similar scans - it was late one night and i was tired and emotional / big mistake) How to stay strong for him? What do i say that won’t sound useless ? How do we/I tell our daughters?

Our eldest is in the midst of sorting out accommodation to start in Manchester Uni in mid September- 1000km from home - if after all this she decides to go. The youngest has two years left at school and im not altogether sure she has understood how serious things are - like i said he seems back to normal again.

It’s 2am (again) I’m not sleeping but today has been one of those stealthily « ‘wobbly’ when no one is looking » days.

Thank you for listening.

buttercup01
Posted by

Hello, u might also want to join the  Living with cancer outside the UK and Family and friends groups, to get extra support.

The helpline is available  8am to 8pm UK time  see home page for phone number.

Don't be alone, talk to folk here   I'm just an ordinary member  who had secondary brain met treated by stereotactic radiotherapy 6:years ago. A Community Champion will be along shortly to welcome you to the site and give you a few pointers  

Good luck for Wed Let us know in the Brain tumours or Family and friends group as well how he got on  x

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Granny Sue
Posted by

Its very scary any kind of cancer but brain especially but there are treatments availaible and people do respond well to these. Its a balancing act of so many things when first diagnosed fear anger and mostly of the unknown .Once you have the results then you take a deep breath and trust in the docters to do the best for your husband . My husband has had brains mets from his original cancer in his gullet and has survived 3 and half years from the orginal diagnosis and nearly two years since the brain mets . The thing is to get some support can anyone come and stay for a bit ? Have you good friends in the community where you live ? You will need support for you as well as your husband .Wish ypu luck keep posting it really helps lots of hugs xx 

Granny Sue

buttercup01
Posted by

Btw, phone no of helpline outside of UK is 44 207 091 2230 

When u see the consultant ,can u take a French speaking friend with you, to help with questions - and answers.?

Your older daughter could consider deferring her uni place a year. That way she keeps her options open, rather ithan ditching it completely.

Lastly,avoid  Google!  ( Especially when tired/ emotional/ in the middle of lthe night. We've all done it tho)

You can get info from the helpline, the website n other members instead 

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Lost abroad
Posted by

Thank you so much for your kind words - i will join the groups you suggested.  Tomorrow is looming but you are right it is the unknown that is scary. 

Lost abroad
Posted by

Granny Sue - thank you. I will follow your suggestions and  take a very deep breath and then try to concentrate on what comes next. Unfortunately i don’t have any friends close by so it’ll just be the two of us. Ive printed out the suggested questions to take along ... fingers crossed the results won’t be what  ‘dr google’ was frightening me with. Then we will come back and tell the girls, . Anger and fear are definitely my overwhelming emotions at the moment.  Thank you again.

Lost abroad
Posted by

fl0ralW0man - thank you again ( sorry i thought you would be tagged automatically with my last reply).  I promise i will avoid google from now on! 

For my daughter and uni the timing has been dreadful - today Tuesday she had to accept or refuse the accommodation offer, or risk not getting anything. As for deferring... it might not be as simple because she has her heart set on studying in Manchester and this year 2019-2020 will be the last year European financing will be available... next year the prices double, so will become impossible. At the moment she is excited about going and we don’t want to do anything to quash that but oh how I wish it wasn’t this year ....at least there are direct flights to Manchester from our local airport. 

Thank you again x

1957jools
Posted by

Hi Lost Abroad

It's so tough isn't it - my husband has also recently been diagnosed with a brain tumour but we are a little further down the line and at least have a prognosis.  However, at the time of the diagnosis my son was just about to move away from London to start his first year as a junior doctor in the North of England.  He was conflicted about going - should he defer for a year, ask to put his start date back by one rotation (4 months)? In the end, he decided to go ahead and move - he started work last week.  What he did do, however, was be very open with the hospital before he started work  - they have been wonderful - adjusting his rota so that he can come home at weekends, meeting with him before he started work, offering all kinds of solutions to his predicament.

I think he would suggest that your daughter takes a similar approach - it's hard to open up to complete strangers but he was amazed how accommodating they were.  Whatever she/you decide it will be right for you but thought I'd share our experience.  (My son also told me to avoid Google if that helps.)

Sending good thoughts your way - you aren't alone.

Lost abroad
Posted by

Hello 1957jools, thank you so much for taking the time to reply, yes it is very tough. It sounds as though we are in a very similar situation- i hope that the news for your husband is good.

I think your suggestion to talk to the University is a really brilliant one, i know they have someone living in the halls of res to provide ‘pastoral care’, perhaps that is who we should speak to. It is a worry knowing she will be so far from home with a brand new network of people around her but nobody close. 

Thank you again. Xx