New member, diagnosed with brain cancer 4 weeks ago on my 44 birthday

Have a meeting on Thursday with the consultant for lab results but not looking good need to start chemo and RP next week

HI Stephenl9

a warm welcome to the online community. So sorry to hear about all you are going through. Hopefully your appointment on Thursday with the consultant will give you some answers so you know what you are dealing with here. Not knowing is far scarier than knowing.

I'm supporting my husband through his stage 4 brain tumour journey. He was first diagnosed in Sept 2020 . I understand what an emotional rollercoaster ride those early weeks and initial appointments are.

One suggestion I would make ahead of your appointment this week is to write down all your questions and concerns and take those notes to the appointment with you. They will help you to stay on track and make sure that you remember to ask everything you feel you need to. These early appointments can seem particularly overwhelming.

This group is a really safe supportive space so please reach out anytime. There's always someone around to listen who gets it, someone who understands and even someone to offer that virtual hug when its needed. You're not alone here. We're all 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.

For now though I'm sending you a huge virtual hug. Try to stay positive about your appointment. I'll be sending positive thoughts your way on Thursday.

love n hugs

Wee Me xx

Thanks for the message, how is your husband getting on?

how did he find chemo and RH?

HI

physically he's incredible. He was given 12-15 months in Sept 2020 but he's still going strong and aiming for a PB in the   London Marathon next month. He was 50 when he was diagnosed but was always a fitness freak/.marathon runner. That physical fitness has stood him in good stead and if/when he loses the ability to run, we will have a real problem on our hands as its his key coping mechanism. 

Mentally he's slipping, His tumour was in the speech and language area of the brain so all his symptoms are cognitive. he can barely read, his short term memory is pretty much gone and he is very easily confused. A bit like someone with early stages of dementia.

He coped really well with the initial 6 weeks of oral chemo/radiotherapy. Some nausea the first few days but he was never actually sick. The CNS gave him strong anti-sickness to take whether he felt sick or not for the first 3-4 days and that seemed to help. By about week 4 fatigue started to creep in and that lasted for about a month after the treatment ended. He was offered a further six months of oral chemo in Jan 2021 (one week on, three weeks off) but he declined and has declined all further treatment since. A decision I have had to respect. 

The only medication he is currently on is Keppra to prevent seizures.

hope that helps

love n hugs

Wee Me xx

that's great news, and thanks again for the detailed email as it does give me confidence that I can fight it all the way.

I am being weened of Steroids at the moment which I am glad as they make me feel ill (did he have any issues with this?, Keppra hasn't caused me an issue so not tor worried about it at the moment.

 the tumour was in the right hand side but my speech is ok, short term memory is flaky but have full mobility etc just lost taste/small and left hand side feeling for my whole body.

but I am managing, i am physically fit but currently still waiting for my head wound to heal before I can start going out again

I have a meeting on Thursday with my consultant and worried I might get the news about 15 months but i will deal with it when/if that happens, 

I have started a list to go though on Thursday but do you have any questions you think would be good to ask as well.

Thanks again for your support

I'm not sure of specific question but I'd suggest you write all your questions and concerns down and take the notes with you to help keep you on track. It's very easy to become overwhelmed in those early appointments. If you have an appetite to try any clinical trials etc that may be available then ask about those too. There's no such thing as a trivial question or a daft question here. 

easy for me to say but try to focus on the facts as you know it and don't assume the worst case scenario. Avoid Dr Google too ! He's a scary chap!

Wee Me xx

Just finished my 6 weeks of chemo and radiotherapy and on my 4 weeks off before my next chemo round of 6 cycles, but getting a few headaches on my other side of my head….is this a normal healing process after radiotherapy? Paracetamols are helping but not clearing it

HI Stephenl9

well done on getting through the 6 weeks. 

If the headaches don't settle in a day or so I'd call your CNS or GP and just check. Everyone reacts differently and the radiotherapy does keep doing its job for a while after the treatment is finished so its potentially all related to that. Remember your body has been under a lot of strain for the past few weeks.

You can always call the helpline too to seek advice.

Hope it all settles soon. Take it easy.

love n hugs

Wee me xx

Thanks, it’s not waking me up so hopefully it’s just the after effects to the treatment as they said it will peak once i finished treatment which was on monday, have a call on Tuesday so will mention it then, if it gets wirse I have a out of hours number I can call.

how is your husband?

Sounds like a plan.

My husband is ok. We got dealt a blow last week when we saw his latest MRI images - there are two new active tumour areas and they have doubled in size over the space of 6 weeks. They've offered him oral chemo (TMZ) but have said it only has a 1 in 3 chance of slowing things/stabilising things. He speaks to the oncologist again on Monday to decide whether he wants to give it a try or let nature take its course.

He wants quality of life over quantity- I get it - so there's some difficult thoughts being had and a difficult decision to be made. I'll support him whatever he opts to do.

We're 27 months into a journey that they suggested would only be 12-15 so its an emotional place.

We'll get there.Thanks for asking,

love n hugs

Wee Me xx