Newbie

Hi Scooby,

Welcome to the group. I see you've already been given info on all the support Macmillan offer elsewhere so I won't repeat it here but they are there if you need them. 

My wife has a glioblastoma in her right frontal lobe. She was diagnosed last June and has recently finished the first line chemotherapy. It went fairly well considering what most people's perception of chemo is but everyone is different. We're now just living from scan to scan trying to cherish every moment we have.

You may or may not find it helpful to read through others' stories in this forum. I should warn you it can be inevitably grim sometimes but there's lots of positivity too. I think it helps people just knowing that you're not alone and others are here to support and listen.

Definitely worth trying to get some help with any emotional issues which I know isn't helped by a lack of sleep. They may well give you something to help you sleep if needed as the steroids can play havoc with sleep cycles. The emotional rollercoaster is rough as you know there will be bad days but there will be good days ahead too.

Great to have you in the group, you're still here, still fighting, keep it up

Chris

Hi Chris,

Thank you for your reply.

Firstly I am sorry your wife has this terrible thing and has to go through this ordeal and also sorry you/your family are having to navigate this.

Yes I would agree, forums can and have been really helpful and I have connected with a lot of wonderful humans. Equaly some posts/opinions have created more anxiety in some instances. This is when I know it's time this 50 year old middle aged woman needs to step away from social media. Sorry should have said only 50 obvs

Thanks again for your reply.

HI Scooby

just wanted to extend my welcome to you too. I echo what Chris has already said.

This is a 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.

With regards to the sleep thing- if you're taking steroids just now you should take them before lunchtime otherwise they can mess up your sleep pattern. My husband was prescribed them about 3 months ago and he was taking them at 6pm and then not sleeping well. On the advice of the nurse we moved them to the morning and so far so good. Otherwise perhaps have a word with your CNS and see if there's something they can suggest here.

For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong and hold onto that sense of humour

love n hugs

Wee Me xx

Hey Scooby,

I just want to add my voice to Wee Me and Chris's welcome.  

It sounds like you are responding perfectly reasonably to the diagnosis you have received.  I suspect that everyone on here, the diagnosed and their friends and family, can all relate to sleeplessness, anger, rage and despair.  I suspect that all of us have given someone a mouthful for expressing their opinions about the situation (whether they were too positive or too negative).

Have you got the support you need?  Do you know which professionals to call when you have questions?  Assuming that you are UK-based... one of the key things to learn is that although the consultant is directing your treatment, they will leave your GP do all the day to day things such as repeat prescriptions and looking after any other wider care needs you may have.  But I found having contact details for the cancer nurses to be really important too.

Have you got friends/family you can talk to who will listen without trying to solve the problem (or can they learn to :))?  One thing I learned in travelling along this path with my wife is that it is not a one person job.  It will help enormously if you have a few good listeners around.  And my experience is that, once they have gotten over the shock of not knowing what to say, most people want to help.  You just might need to coach them into how they can help (e.g. just shut up and take me to a nice coffee shop).

From your message, it sounds like you are a practical and straightforward kind of person.  Keep being you.  There is no getting away from it, this illness is a bugger... but I think things will settle down for you.  My wife's experience of the first chunk of radio and chemo was that it wasn't too bad - one of the main challenges was just the disruption to life of having to attend the hospital every day.  But once we got to the end of that treatment, things really settled down and we got into a rhythm and we got on with life.  So... power through.  Living day to day for now, till you get to the end of this first bit.  Then we'll hope for a season of calm - where you can regather yourself.

And as for steroids in the afternoon... are you all mad?  Steroids for breakfast (and lunch if necessary), never at tea time.

Big hug...

Pete