Boyfriend’s Brain Cancer

HI SarahC83

First of all I wish I could give you a big hug....it's a scary diagnosis and the Dr Google stories are positively terrifying. Been there with that search.

I hope your appointment with the oncologist put your mind at ease a bit.

My long story short started late last August when my 50 year old fitness freak husband sat me down and said he had something to tell me. He'd gone to the Drs behind my back, been for scans etc and had been re-called for an emergency scan that day. By the end of the day we knew he had a large mass in his brain. Within 2 weeks, he'd had surgery to be-bulk a  30mm GBM4 and a week after that we got a terminal diagnosis. Terrified doesn't begin to cover it!

I think since then, like every other partner on here, I've gone through every emotion in the book....but you know what...that's ok. There's no right or wrong way to feel. There are days I've been a total mess. There have days when I've been ok. Most days are a mix of the two. You will get through this though.  Once you get over the initial shock you eventually reach a level of understanding/acceptance of what you are facing together. 

I don't mean to scare you by mentioning my partner's diagnosis. Everyone is different. Every tumour is different - in a different location, is a different size, responds differently etc. Ask all  the questions of your medical team that you need to get the answers that explain it for you. If they fire a load of medical jargon ask them what that means in plain English. We were lucky in that our neurosurgeon was straight and to the point. He didn't mince his words but he also didn't give us false hope which would have been worse. The oncologists we've spoken to so far haven't perhaps been quite a straight with us.  My husband has had a few complications with blood clots which moved the goal posts here a bit. 

Make sure through this journey though that you've got someone to talk to. Everyone will tell you to look after yourself and, you know what, they're right. You boyfriend is going to go through his journey. You'll go through the journey together but you'll also have your journey that he might not always understand. Having someone to talk openly to is a Godsend. I've been so lucky with a few of my friends who have put up with me for these past 6/7 months. Sometimes though talking to a stranger is easier. Just promise me, you won't bottle things up thinking that's how to be strong because its not.

And if its any consolation, my husband completed his chemo/radiotherapy in November. He declined further oral chemo opting to go for quality rather than quantity. He's still able to go out running though and is focused on getting back up to speed. It's almost an obsession but he's doing great. He ran 48 miles last week. That's a bout 40 more than I could do in a week right now!

You can get through this. Lord if I can get this far so can you! If there's anything I can do to help, just ask. 

I have faith in you. You've got this. Hang in there.

love n hugs

Wee Me xx

Thank you so much for sharing your story. It means more to me than I can ever say. It helps me feel less alone and I need that so much right now. This is all so fresh and I still feel like I’m stuck in a bad dream sometimes. I lost my mom to cancer when I was 23 and numerous other people since and I don’t want cancer to take the love of my life away too. 
Chris’ oncology appointment went well and he has a treatment plan in place. He’ll have an MRI tomorrow to see how everything looks since his surgery and then he’ll begin 30 days of radiation and oral chemo. I wasn’t quite clear on the oral chemo he’ll be taking or for how long. (His mother went to the appt with him while I attempted to work) What’s important is Chris is determined and has an amazing attitude about everything. He doesn’t seem scared in the slightest and that brings me some comfort. He makes me so proud. He’s so incredible and here I am a pile of terror breaking out into tears 100 times a day lol 

HI SarahC83

Glad my words were of some help. Sounds as though Chris' oncology appt went well and he's to get a similar treatment regime to George had. The way his worked was 5 days a week of radiotherapy (m-f) for about 15 mins. The oral chemo was taken every day for the 6 weeks. He coped really well with both. The chemo tablets (TMZ- one  a day first thing) made him feel a bit yucky but he wasn't actually sick. The radiotherapy was fine and it was maybe late week4/early week 5 before the fatigue associated with it kicked in. The fatigue lasted for about 3/4 weeks after it but he was up and about every day and wasn't "ill" as such. But as I said before, everyone is different. Mental attitude is a lot to do with it. 

Hope you're feeling a bit calmer now you know the plan for the coming weeks. The emotional rollercoaster will likely keep rolling but know you're not alone.  It's tough watching them face this and being helpless to do anything useful to help.

Hang in there. You're doing great

Wee Me xx

You are such an angel. Thank you so much for giving me an idea of what's possibly to come. Chris went to get his "head cage thingy" made for radiation lol He actually found it fun because he said it was very similar to making a life cast for special effects make up. So today was the day of "mapping". He somewhat has an idea of what to expect (although like you said, everyone is different) from the chemo and radiation. His mother is currently taking TMZ and doing radiation for breast cancer. However, I'm sure radiation affects you much differently when it's being done on your head vs your breast. I hope he tolerates everything well.

Hi Sarah 

I have just read your post and we have a very similar story. I am 37 in June and my husband is 44.

He got his terrible diagnosis in April last year so we have almost been on our rollercoaster for a year.

That is absolutely amazing they removed them all. The trouble with GBM is they have finger like projections so some can be left behind. My husband had a large one removed but has smaller ones that were too deep for removal.

The treatment works for some people and not for others. We are "others". Despite my husband being very poorly in Nov he has rallied through and stable. He's as happy as he can be, enjoys a bet and tv. I have had to give up work tho as he isn't safe at home on his own. I worry he could fall and he can't cook, make a hot drink safely.

We are using CBD oil. There are lots of groups on Facebook for GBM and brain tumors which I have found helpful.

Look up trials too. I think there's a vitamin C infusion that looks quite promising.

Sending lots of strength. x

Hello Sarah.

My partner is 41, had an grade 2 diffuse astrosytoma discovered 6 years ago after several long seizures. He has had surgery, radio and chemo which had an extreme reaction and badly effected his bone marrow and made him really ill with constant blood and platelet transfusions. He then had to get surgery again as his tumour was very fast growing. He was diagnosed with a grade 4 GBM in January and is getting more radio at the moment.

Through all of this he has been so amazing and positive, cycled 500miles around Scotland not long before his second surgery and for the periods in between treatments has had no symptoms. He seems really invincible and I’m trying to keep his positive attitude but it’s really difficult and scary. I feel a bit broken with it all too. 

Speaking to my local maggies centre has helped a lot. It can be easier to talk to someone less involved because you are not worried about scaring them. If he has a neuro oncology nurse you should be able to speak to them and they can explain more about you’re partners situation. I have been to all the outpatient appointments too as it’s easier to have two people as you can pick up different things. 

It depends what your GP is like but we have been both been speaking to the same GP so that I don’t have explain the situation. 

Hope you get more answers from oncologist.

sending hugs,

jenny

Hi sarahc83 , hope you are ok. I am going through the same as you at the moment. My partner is 41 usually fit and healthy , he starts his treatment next week. He seems to be strong and positive and fine about it all but I’m trying hard to hide how scared and upset I am :( 

HI Sarah

just checking to see how you're holding up. Thinking about you

love n hugs

Wee Me xx

It’s so sweet of you to check on me. I have my moments! My boyfriend had his first craniotomy and was recovering and doing well and preparing to start radiation and chemo but his post-op MRI showed a tiny piece of his tumors was left behind. (They confirmed it wasn’t new growth, but part of the original tumor. Not sure how they can tell?) So about a month after his first surgery he went in for his 2nd craniotomy a couple weeks ago and his surgeon was able to get everything 100%. He’s now been cleared to start treatment and will likely have his first radiation session next week. I’m trying to stay in the moment and remain positive as best as I can. I hope you’re doing well!

It’s so hard. I’ve started journaling a lot to get out all my scary thoughts and feelings. Staying positive is really difficult but I’m doing the best I can and putting on a brave face.