Glioma with Enhancement - husband diagnosed

Hello Manorbier

My daughter, aged 40, was diagnosed with a brain tumour, an Oligodendroglioma stage 3 last summer after suffering similar symptoms and having a car accident...no one hurt thank goodness. The doctor said it was epilepsy but after further tests and an MRI the tumour was found. After a biopsy in August, she had an op to remove some of the tumour, they were only able to take 25% . She recovered well and left hospital after 4 days. Then she had radiotherapy for 7weeks which took us up to Xmas. Losing most of her hair has been very difficult for her plus her 'friends' have not been there for her...it's a lonely time for her.

Today she has started 6months of chemo...more hair loss to come. This is all new to us and it would be good to connect with anyone in a similar situation. 

We're all keeping positive and getting on with living but it's so difficult isn't it.

You're not alone although it feels like it at times.

Apologies,  that should have read  Manorview08

Hi Manorview08

a warm welcome to the group and the online community. So sorry to hear about all that you are going through. It's a scary rollercoaster of emotions for all concerned.

I am supporting my husband ( now 52) with his brain tumour journey. His started with a weird episode while out running in July 2020 (he forgot how to read and speak and didn't know the names for things - he did keep running for another 6/7 miles before he came home -men!) By early Sept 2020 he had been diagnosed with a grade 4 glioblastoma. He had surgery to debulk the tumour ( it was about the size of a gold ball and situated in Broca's Area of the brain) then underwent 6 weeks of oral chemo/radiotherapy. His diagnosis was terminal from the outset.

Those early weeks were the hardest. Not knowing exactly what you are dealing with is SO much harder than dealing with known facts. I hope you get some answers soon and a clear expectation of what the plan is.

For now though please try to stay strong. Hard as it is, be led by what your husband needs and what he wants to know. It's such a huge thing for everyone to get their heads round. I'd encourage you to write down all the questions you might have both now and for future appointments when you have more details. Use these notes as your script/prompt as those early appointments can be quite overwhelming. If you've your questions prepared ahead of time then you can use them to keep you on track.

This group is very supportive. Everyone around here "gets it" so please reach out anytime. It’s always good to talk so remember 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.

To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section. 

I hope of this has been at least a little bit helpful. 

Remember that everyone in this awful situation is unique so don't be scared by stories and experiences you may hear from others or read online . The timeline they gave us expired 2 months ago and my husband is still physically fit. He runs more than 50 miles a week and has his sights set on another marathon in April. Time will tell how that works out. 

I'm sending you a huge virtual hug. Stay strong. Please remember to look after yourself here too. Taking "me time" isn't selfish, its essential. You are coping so much better than you think you are. You'll have to trust me on that. 

love n hugs

Wee me xx

Thank you both! 

We had a letter today, operation in 4-6 weeks to remove as much as they can. Waking him up during it, we don't know the type of cells yet. 

They believe the large part is low grade but it's the enhancement that concerns them and after reviewing with their team it is on 3 lobes.

It's a scary road ahead, his seizures are getting worse, he is not working obviously, not driving and feels like he's gone from all to nothing.

He will have an all day assessment and various other tests before.

I am sorry to hear of everything you are both going through, wee me i am grateful to hear a more positive story, we have a soon to be two year old little boy as well and we had a tough couple of years my husband is now estranged from his family which has reduced his stress immensely.

Just taking a day at a time and I've decided to start swimming once or twice a week again when at work. 

My fantastic mum has my son and husband now , thankfully live next door.

Hi Morag,

I am sorry to hear of what you are going through. I have done a reply I thought it went to both of you.

It would be good to chat to someone else, it's a lot to take in 

A day at a time works for me. An hour at a time on the rough days. Glad to hear  you're going to go swimming. I do yoga in the mornings before everyone else is up. Just a quick half an hour while the house is quiet. It really helps. Once the mornings get lighter and the weather improves a bit I'll hopefully go back to running 5km a couple of times a week. 

My husband's surgery was an awake craniotomy. The Friday beforehand we met with the speech and language therapist who asked him a whole series of questions to get a benchmark level so she could ask the same question during surgery to gauge the difference in response.  On the day, he was knocked out for the first part of the surgery then "wakened" so that they could have him responsive while they worked on the tumour. When he got too tired, they let him "sleep" again. Considering he is terrified of needles he coped really well with all of that. 

happy to try to assist and support where I can but as I said, everyone's experience is different.

Glad to hear your mum is close by to help out. 

love n hugs

Wee Me xx

thank you just had the letter he has his op on the 7th. Telephone call this weekend and Tuesday, appointments Wednesday, another Thursday, covid tests the following weekend so very quick.

many thanks

The build up to any operation is worrying but now you have a date things will move relatively quickly. As we all know just take it day by day and try to keep your husband free from any bugs, colds etc. These surgeons know exactly what they are doing as these types of ops are done every 

Sending positive thoughts and strength to you both.

HI

It is all a bit of a whirlwind but that's good that you have a date to work towards. As Morag says below, take it a day at a time. Take it one appointment at a time. The whole team deal with cases like this day in and day out (sadly) and they will guide you through what to expect. Have any questions you might have ready and remember there's no such thing as a silly question. One thing I would suggest asking is what you can expect when he gets home. 

Stay strong. Stay positive. You're doing great here.

love n hugs

Wee me xx

Hi Manorview

I'm so sorry you are all going through this. 

I was diagnosed with a glioma with enhancement 7 months ago and had an op within the week due to brain swelling (I think). I didn't want to know timelines but it's very hard not to look. The thing is they can be very misleading, so whatever you have read it's worth calling Macmillan to get them to explain as it might be better than you thought. There are hundreds of different types so when you read general info it may not be the right info. 

After my op the biopsy results were better than they expected. It was a couple of months after the op that they had these results in full. They recommended treatment based on my biopsy results (type of tumour, things like genetics and biomarkers they test for). It's not fun but I've made it through the radiotherapy and I'm having chemo now which matches my particular biopsy results.

I found it helpful to get someone I could talk to. The Brian's Trust Charity have been helpful, so has calling my local hospice. Sometimes the hospital have not communicated brilliantly and having a friendly person to call and say whatever jumble of emotions or questions or concerns was in my head really helped. They will help family as well as the person directly affected. They are also good at helping you get questions ready for appointments. 

I hope this is some help. I remember it was horrible waiting for the next step each time; and how good it was to have someone to talk to.

Thinking of you