Steroids

Hi Kenny,

I'll let you see what the nurse says but I would say yes could well be the steroids so don't worry too much that it's because of tumour growth so soon.

My wife had arthritis like symptoms when we tried to take her off them so it took 6 months to finally get her off them completely. This is not ideal as they have their own side effects. In hindsight I would have just kept on top of the paracetamol more than keep reverting back to the steroids but if the paracetamol aren't cutting it then there isn't much choice. The nurse may well suggest just putting her back on a low dose and coming off it more gradually.

All the best,

Chris

Hi Kenny

I'm hoping by now that you've spoken to the nurse and had some reassurance. I would echo what Chris has said.

I'm supporting my husband through his GBM journey. He was first diagnosed in Sept 2020 and put onto steroids post-surgery that he was supposed to continue with throughout his 6 weeks of radiotherapy/chemo. I say supposed to as the stubborn b*****r decided he didn't like them and started binning them after a few weeks! The CNS gave him fits for that stunt.

More recently he experienced swelling in his brain and at our final call with the oncologist he prescribed them again. This time the difference taking even a low dose made was incredible. Perhaps your mum still has some post-surgical swelling and a low dose might be just what's needed to even things out as she recovers from the surgery.

This is safe and supportive community so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone. We've got 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.

Please make sure you are taking care of your wee self here too. This is an emotional rollercoaster ride so taking time to keep your own wee batteries charged isn't selfish- it's essential. Trust me.

For now I'm sending you a huge virtual hug and lots of positive energy. Stay strong. 

love n hugs

Wee Me xx

Thanks both - sorry for the late reply.

my mum ended up going back on them she went to see the oncology doctor and they said she still had some swelling there as they were unable to remove all of the tumours as it would have left my mum paralysed. She is one tablet a day and is starting a 3 week course of radiotherapy this week. 

HI

its incredible the difference one tiny wee white pill can make.

Hope the radiotherapy goes smoothly.

Sending love and light and hugs to you both. Stay strong

Wee Me xx