Glioma with Enhancement - husband diagnosed

Hi,

Thank you, it always feels like you just want to know a but more.

The hospital have been great and yesterday's appointments went well. He had a seizure there today but was his mildest one yet in comparison to Sunday so hopefully tablets may be starting to do something.

They currently are not allowing any visitors, just hope it's not too bad and he doesn't want to know too much.

His job have asked him to put his resignation in. Glad to hear macmillan have been helpful and the hospital recommende Brian yesterday. We've found out macmillan have a centre at our local hospital as well as where he has his op.

Just got to hope Monday goes ahead now.

Sending you love and support in your journey.

Thank you

I'm in a similar situation to your daughter. I've got oligodendroglioma grade 2/3 diagnosed last summer, had the op, had 6 weeks radiotherapy, and started my first PCV chemo cycle last week. I hope your daughter copes well with the treatment. It's a rollercoaster ride we didn't ask for!

Thanks for making contact SmallSteps. My daughter is 41, married with a son of 7, she's a teacher but she can't see herself going back to teaching as it's so stressful these days. All this came out of the blue as her GP put the headaches and low concentration down to mild epilepsy...plus a car accident and luckily no one was hurt, which lead to more tests.

She is grieving for the life she had planned and hoped she'd have and all her family are being as supportive as we can without being in her face all the time plus keeping a normal routine for her son. She is the 1 who has to go through the treatment while I feel powerless. She's only a week into chemo and will be on it till August and we have enough info about what's going to happen to her general health....she lost most of her hair through radiotherapy and is coming to terms with that...most days anyway.

How are you doing with your treatment so far?  

Take care.

Just to let everyone know, they have only removed so much it is a grade 2 glioma, the area of enhancement and what is left they do not know an exact grade or how much is left until the next scan.
They are not doing any further treatment for now, they want to see how he goes. We are in limbo, he keeps feeling sick, is tired a lot, sick of doing PIP application and ESA forms.
The consultant is trying to say take time and try to do normal activities like bits of exercise if you can but not to work obviously. Just feel like a massive rollercoaster, never getting off, no proper answers. The more we read the letter its all just coming across like a waiting game, await scan and everything may change all over again.

Oh Manorview08, hang in there. Listen to the consultant's advice. Take this slowly...one step at a time. Its a huge amount to take in and cope with. 

We've been living scan to scan for almost 18 months and I'd love to say it gets easier but its a rollercoaster ride. This is also a huge exercise in patience both with yourself and your husband.

Please remember that you can also reach to 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. They might be able to support with all the forms.

Sending you a huge virtual hug. Stay strong. Stay positive

love n hugs

Wee Me xx

Thank you for sharing your story! Similar to mine, im a nurse and cant se myself being able to go back to work if im just waiting about. Appt keep being pushed back too. A good thing I know but also very frustrating. I didn't meet the criteria for ESA so hoping my PIPs is accepted. A stressed woman 
Well wishes

Thank you.
Just an update, apologise if a trigger for some people - my husband was having his regular scans and last year we went from a grade 2 to grade 4 which, was devastating as it happened much quicker than they all thought.
He had a second debulking just for the regrowth into the space, underwent 6 weeks radio/chemo - TMZ. He is now heading for month 4 of the 6 month TMZ, we await his latest scan results.
We are under no illusions and have referral to a local hospice for when we need to, they also offer someone to come and speak with us at present.