Results call

Hi Mat

having been in this position with my husband in 2020, the key things we asked at the time were what were the treatment options. Now perhaps Covid limited things slightly but other than the seemingly standard 6 weeks of oral chemo/radiotherapy that's offered, there weren't  any other options discussed. Would be worth asking if there are any clinical trials open. No harm in asking about about using CBD but from personal experience they may be hesitant about it for now.

Other things we talked about rather than asked about were prognosis and what we could expect of the following months. That said, they told us my husband had 12-15 months. That timeframe expired in November and physically he's still really fit. He's a marathon runner and still runs around 50 miles a week. I guess expectations and impact on lifestyle depend largely on where in the brain the tumour affected. 

We were advised that he should put his affairs in order so with the help of a lawyer and some financial advisers, he updated his will, put a power of attorney in place and made arrangements with regards to his pension. 

It's likely to be a very emotional appointment so my practical advice would be to write your questions down ahead of the meeting and use that as a checklist. Nothing is a stupid or trivial question so consider everything. We have two kids (21 and 24)  plus my mother in law passed away in 1993 from a primary brain tumour so we had questions around whether this was hereditary or genetic- fortunately the answer was No.

Make sure you leave the appointment understanding what you've been told and that you are clear on the next steps. The take it all one step at a time.

I'm sure the helpline can offer further guidance so please give them a  call -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 hope this has been some help. Stay strong, Stay postiive.

love n hugs

Wee me xx

Cheers. From reading your notes, I'm less driven than your husband. OTOH - his contiuned survival speaks for itself. I'll get on the helpline.

Hey Matt.

I would keep a recorder on so you can go back to the discussion if you need to.

You've already had surgery - did the surgeon give you any information? They usually write a report too. And they come and see you after you wake up and tell you how it went.

I think as standard they will do some molecular tests, worth finding out your MDMT methylation status and IDH1 and 1p/19q.

If it is grade 3 or 4 they will definitely send you in for radiation and chemo. Radiation is daily visits to hospital for 6 weeks.

If it is lower grade they may just want you to sit tight for a while.

Good luck

PS Forgot to say, have a look outside the box, eg clinicaltrials.gov/.../NCT01149109

No nothing. I manually requested a copy of the operation notes from his office.

I edited my reply :)

sorry, MGMT.

Also, if you can/want to take some control, look into Ben Williams publications, they are free over the internet.

HI 

hope the call went ok yesterday. 

love n hugs 

Wee Me xx

IT was a pretty bad day yesterday. Had the first 2 hour consultation with my local oncologist as opposed to neurosurgery team in London. That has hit really hard. Floored right now. Up until now everything has been adrenaline. This was a piece of paper on how the next year is going to go. A bitter pill tbh

HI

sorry to hear it was a rough day. Its all a huge amount to take in and process. Take your time. Ask all your questions. 

sending love and light. Stay strong.

love n hugs

Wee me xx

Damn, When you feel like it  let us know what was said, On the "good" side of things, an oncologist dedicating 2 hours to a patient can't be all that bad. Who is he may I ask? There's only like 4-5 neuro-oncologists in London.