Mother-in-law Glioblastoma Diagnosis - Any and all advice welcome!

Hi Blaine,

Welcome to the group. Sorry to hear what you're all going through. I'll try my best to respond to your questions from my experience (wife diagnosed with GBM in July '22).

1. More fatigue as a rule. It's partly down to just the travelling and being prodded and poked but brain radiation is known for causing more fatigue. I asked my wife's friends to take turns with me so it wasn't just me every day and that really helped. They would often take her out for lunch afterwards.

2. I can't really help here as my wife has been amazingly positive. She has had one to one counselling with a local cancer charity but didn't find it very beneficial. 

3. Standard protocol is 6 cycles over 6 months of temozolomide at a higher dose (5 days on then 23 days off). If she has a methylated MGMT then you're correct that studies suggest this responds better to the chemo. My wife does but we won't really know progress until next MRI in April.

4. We've had lots of weekends away since radiotherapy and have just had a week down in Cornwall. We plan on a rolling 3 month basis so nothing seems to far away. Travelling abroad doesn't appeal because it's hard to get insurance and because we'd be worried if anything happened and having to go to a hospital far from home. 

5. A friend gave us a vial of CBD oil (home grown!) but we haven't opened it. My wife manages with standard meds. 

6. Yes, very beneficial but can be tricky to incentivise. Visits from friends or family help. She also likes cooking so we try and find new recipes for her to try. Spring will be here soon so normally would be gardening but her tumour has left her with reduced mobility so perhaps not so much this year.

7. Interesting you mention Netflix because that's exactly what we did and I now regret it. My wife has put on a lot of weight as we can't get her off the steroids so she eats a lot and watches a lot of TV. Having the TV means she doesn't get bored when she's just sat doing nothing but that means she's quite content doing nothing. We discussed just today taking the TV out of her room and stopping Netflix to give her an incentive to find something else more constructive to do. 

Hope that's of some help to you. It's a tough gig I'm afraid as not only do you have the cancer to deal with but you also have a brain injury thrown in to boot. 

All the best and do keep in touch with any questions or to just vent  from time to time.

Chris

Hi Blaine

a warm welcome to the group. So sorry to hear about all that you and your mum are going though. Life's too cruel.

Chris has done a great job of replying to your questions so not a lot more I can add, I've been supporting my husband through his GBM4 journey since Sept 2020. He was a fitness freak (marathon runner) so some of the issues you list we've not encountered. Stopping him has been more of our challenge! He ran 2 marathons last year and in total covered over 2800miles for the year. Crazy!

With regards to question 4 - he's been able to take 3 foreign trips in the past year or so including a skiing trip to France plus several UK weekends away with his friends. Everything has been factored around what he has felt up to doing. His symptoms are largely cognitive(speech/language/understanding) so not all activities have proved to be compatible .His attention span is quite short too.

Being active certainly seems to be beneficial (although my husband may have taken that to extremes) but also getting outside and getting some fresh air/change of scenery can also be good for her mental wellbeing. I'd suggest you encourage that where you can.

There is some helpful information on the main website. Here's the link Supporting someone | Macmillan Cancer Support 

There are no hard and fast rules for getting through this. There's a balance to be found between encouraging your mum/ "bullying" her for her own good and caring for her too. It is all bit like walking a tightrope blindfold.

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

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.

Please remember to take care of yourself here too. Taking "me time" isn't selfish. It's essential to help you keep your batteries charged. I'll not lie this is a tough gig and after more than two years riding this emotional rollercoaster I'm exhausted (mentally/emotionally/physically) .

Hope this has been helpful. Stay strong.

sending love and light and hugs

Wee Me xx

Hey Blaine,

You've had some excellent pointers already, but I'll add my twopennorth.

- You haven't mentioned steroids - but if she is on them then that could be a contributor to her being awake at night.  In which case talk to the oncologist about getting the dose adjusted down if possible.  They try to give the minimum effective dose, for just that reason.

- My wife had a number of mental health issues starting a year after her surgery.  She was greatly helped by antidepressants.  It would be well worth talking to her GP about it.  Relatively mild doses can have a big impact.  It is not surprising if people struggle with this diagnosis - I can't imagine what it is like to have to wrap your head around it.  Fi was very resistant to counselling initially - but after she had a full breakdown she did agree to see a counsellor for a bit.  I think it was productive of something.  (I had counselling which I found very helpful - but that is a different question.  :))

- My wife didn't get too fatigued and we arranged trips away from a couple of months after she had finished the radio and chemo sessions.  I tried to time them so that they were not straight after a chemo run, but the hospital should be happy to push a chemo cycle back a week or so to accommodate your holiday.  There is nothing magic about the 28 day cycle - it is equally important that your mother in law also lives her life - they can push it to 35 days one month if that works for you.

- I don't think there is one right answer for TV / not TV.  Fi was always very active, but once she was on a heavy steroid dose she put on a lot of weighteven though she was out and about a lot.  I think you have to look at what you can do to maximise quality of life for as long as possible.  That might mean Netflix, it might mean wheelchair walks round the park, it might mean other things.  Have you got a blue badge?  Sounds like she is entitled.

You are obviously doing your best to look after her.  As others have said... try to take care of you as well.  Make sure you are getting the support you need and manage to get some time out.

Big hugs...

Pete

Thank you!!! This is so helpful.  We are going to have an uphill battle getting her off of the couch regardless, so we are hoping some good shows will at least keep her mind off the negative.  She already has issues with weight, so this could be a double whammy.... We will try to get her up during the day!

I think, right now.... we may hold off on planning an international trip and look at a few long beach weekends away.

Thank you!  She is actually not on a steroid now... SHOULD SHE BE??

I am going to ask about anti-depressent.  She's on anti-anxiety now, but not sure it is having the same effect as an actual anti-depressent.  

All of the support and advice is so much appreciated.

Wee Me - Thanks for taking the time to write such a thoughtful response.  We are trying to figure out the best way to push her/keep her motivated to fight while trying not to make her just break down... It's a fine line right now.  Thanks again for the support!

No. Steroids should be minimised. They have lots of side effects. They don't slow tumor growth, all they do is take down secondary swelling, and the oncologists would tell you if that were an issue they needed to deal with.

Have a chat to her GP. I suspect most anti anxiety meds have a bit of an antidepressant effect as well, but it may be that a tweak to the drugs is useful. They are the experts in treatment, but you are the expert in what is going onv day to day, and it doesn't hurt to have the conversation.

UK weekends away were my preferred option too. I hope you find something that works for you.

Keep going... You are fighting a noble battle!

Pete