My Husband has just been diagnosed with a brain tumour on temporal left lobe 29th April.

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I am so scared for my husband he’s 47 we have children aged 13 and 11. He is awaiting surgery to have it removed and to then see what the next steps are when they have found the grade and type. Has anyone please got any support as to surviving longer than the expected time. I can’t bear what’s happening 

  • Hi sroses, I am so sorry you and your family are going through this, practically speaking the main thing seems to be reducing the risk of seizure if that is how the tumour has presented, so if he has been prescribed anti seizure medication, getting that to the right level that he can tolerate.

    With longer term survival, its mainly where the tumour is located, how much can be removed, and whether the tumour type is resistant to chemotherapy - so after biopsy you should have a better idea of what your dealing with.

    What I would say helped massively was counselling, lots of it, for yourself - my husband was strangely OK, terrified in parts, but his journey through was different, but getting sessions with the oncology clinical psychologist helped me immensely with the profound shock and grief, and helped me support my family so much better. 

    The macmillan phone line is also a godsend, I couldn't talk the first time I called, I just kind of croaked, but they were so kind when I just couldn't face anything.

  • Hi thankyou for replying. Yeah he is in anti seizure tablets and steroids whilst awaiting surgery. He has an mri on Tuesday then if the op can go ahead if the mri doesn’t show that it’s spread in the brain he has a pre-op Friday. It’s in the left temporal lobe. He’s only had symptoms for about 3 months just forgetful then headaches for around 2 months. It’s unbearable not knowing the full picture yet. I really do need support x 

  • The waiting is tough, so getting the support around you helps, have you been able to tell friends and family what's happening? We leaned on each other alot in the early weeks, but it started getting better once we talked to those close to us, appreciate that's very personal depending on your set up.

  • Yeah we’ve told family and close friends it’s just so hard isn’t it knowing what to say to support your husband and trying to break down in front of him all the time and to show the kids that we’re positive is just impossible for me. X 

  • HI Sroses

    a warm welcome to the online community. So sorry to hear about all you and your family are going through.

    I have been supporting my husband through his stage 4 brain tumour journey since Sept 2020 so I can empathise with the emotions you are going through at this stage. My fitness freak husband was 50 when he was first diagnosed and it came as a bolt out of the blue. 

    Not knowing what the road ahead may hold is far scarier than knowing so please try to focus on the facts as you know them and steer clear of Dr Google (He's a scary dude!). Everyone is unique and each scenario is unique so focus on what your husband's medical team tell you and not the what ifs. Easier said than done, I know. 

    I told our story in a community blog for this site last year and reading it might help even though your scenario may be totally different -Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

    Please take this journey one step at a time. Once you know what you are dealing with, the medical team will outline the treatment plan and potential prognosis. Please bear in mind that timeframes are best guesstimates based on published averages and no one is average here. We were told 12-15months.....33 months plus my husband is still going strong (physically at least). He's now in the palliative care phase but he has run 47 miles this week. (He's a marathon runner) Mentally is a different story as his symptoms are all cognitive and more like dementia than cancer. 

    This group is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone. We're here for you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    I would like to suggest something - write down all your questions, fears, concerns ahead of the next appointment. There's no such thing as a silly question. Take those notes with you and almost use them like a script to keep you on track. Those early appointments can be quite overwhelming.

    All these emotions you are experiencing are all perfectly normal. Let them show. It's the strongest, most resilient people who show their emotions. It's ok to cry. I've cried oceans of tears since Sept 2020.

    Please make sure you take time for yourself here too. "Me time" is essential for you as it will help to keep your wee batteries charged. So got for that walk, or that coffee with friends. it's not selfish, it's essential as this is a huge amount for you to process too and this journey is an emotional rollercoaster ride.

    I hope some of this has helped even a little,

    For now, I'm sending you a huge virtual hug and lots of positive energy. Stay strong. Remember to breathe. You're coping so much better than you give yourself credit for. (You'll just need to trust me on that.)

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm