GBM grade 4 brain tumour

HI Melski

so sorry to hear about all you've been through over the past few weeks. Sounds not dis-similar to our journey from last Sept onwards. We have 2 kids too - 21 and 23.

My husband is also 51. He was diagnosed with a GBM4 in early Sept last year, had an awake craniotomy to de-bulk the tumour then went through the 6 weeks of chemo/radiotherapy.  HIs first symptom was a funny turn when he was out running (he's a marathon runner) where he found he couldn't form words or read. His tumour is in the Broca's area of the brain that controls speech, language and communication. His eyesight has also been impacted but its due to damage to the pathway through his brain.

If it's any consolation, he coped really well with the 6 weeks of treatment. He was on steroids at the start but being the stubborn bugger he is, he started binning them without telling me. Oncology nurse gave him a right mummy lecture over that stunt! He was fine throughout the treatment but tiredness set in around week 4 and lasted for about 3 weeks after the treatment ended. He did complain on a regular basis that the radiotherapy masked squashed his nose. LOL

He was offered further chemo  (6 months of TMZ) in January but declined- he doesn't want any other treatment or intervention and hard as it is I have to respect his wishes.

All in all he's coped really well. He's still running albeit shorter distances at a slower pace than he's happy with. His understanding and word recall are slowly slipping. His short term memory is awful. 

We see the oncologist again at the end of this month so we'll see what they say this time.

Stay strong. Remember to look after yourself. (it's not selfish to take that me time - you need it!)

love n hugs

Wee Me x

Hi Melski,

I am in a similar position to you and Wee Me, although my husband is 69. His first sign of a problem was weakness in his right leg, which he has now lost the use of completely. So far he has never had a headache! He had craniotomy, radiotherapy and chemotherapy last summer/autumn and was ok with it, apart from the chemo which gave him low platelets, so much so that he had to stop taking it. He declined a second round of chemo because of the side effects. However, everyone is different and reacts differently to any medication.

He is still taking Dexamethazone - and it has given him small cataracts unfortunately - as well as muscle weakness. It affected his blood sugar too, but that is now ok. He was very tired after the radiotherapy, it kicked in about three weeks after the course finished. Its very tiring going every day for several weeks anyway. 

We were never told to isolate, just be careful and this was at the height of the pandemic. In fact the oncologist said to see family and friends as it was important to keep contact with them. We did this under guidance rules (most of the time).

Try to stay positive, don't Google too much (its too scary) and as Wee Me said, take time for yourself and your children whenever you can.

Love

Llamalover xx

Hi Wee Me,

Thanks for your reply. I’m so glad to meet you! My husband is also quite proud of the fact that he had awake surgery

We’ve had a set back to planned radio/chemotherapy though. He had a seizure a couple of evenings ago and didn’t recover as well as he has done before. We were due to start treatment the next day. He needed oxygen and one side of his face looked weaker. The biggest difference was his speech was barely coherent, like he was forming his words in his throat and not moving his mouth. So we called the ambulance and he went (not too willingly) off to A&E.

While in resus they were trying to arrange a ct scan with contrast but he started another bunch of seizures that lasted 40 mins! Little ones all back to back. Then because of the length of seizing he had serious respiratory compromise which led to a lung infection / pneumonia. They put him on a ventilator and he was sedated until mid morning the next day (Tuesday).

This all happened Monday evening and now he is able to speak as normal and is eating etc. He is confused and forgetful but that’s to be expected. He is also hallucinating and hallucahearing (if that’s even a word!) 

He’s still in the Intensive Care unit at hospital but they might have moved him into a different ward by the time I go back tomorrow. We both hope he can come home tomorrow (Thursday) he hates being in hospital but they need to get him well enough to receive radio/chemo treatment on Tuesday.

Thanks for letting me rant, it feels good! I agree: we need to look after ourselves, otherwise we’ll be no good to those we love.

Your husband is doing so well considering and I hope it continues.

Love Melski x

Hi there.  My husband has just turned 55 and was diagnosed yesterday with Grade 4 glioma.  It was pretty much the worst case scenario with the only positives to be taken that if he goes through the horrendous potentially life changing surgery followed by six weeks of radiotherapy and chemo, we (myself and our 19 and 15 year olds), could have him for “up to” 5 years.

We are both really struggling and haven’t told our daughters the full story to try and just take a day at a time.  It kind of feels like there’s so much to lose for very little gain.  How many good days or periods will he have when he can do quality things?

I’m so overwhelmed and haven’t even thought about how I manage work, finances, the death of my husband etc.

I also feel really selfish for thinking like this when it isn’t me with the cancer.  I can’t imagine how he must be feeling.

Sorry for the rant x

Hello Amy77,

I am so sorry to hear your news. It is so hard to bear and your minds will be all over the place with different emotions - sadness, hope, anger and everything else. My husband (who unfortunately passed away 10 months ago) had a craniotomy, followed by six weeks of chemo and radiotherapy (this can only take place when the swelling to the brain had lessened, so there was a gap of about 5 weeks until the treatment started). The surgeon took away 95% of the tumour which was a good sign and he did have  good quality of life after the operation. It is a tiring procedure, as the radiotherapy was every week day for about 5 weeks and the chemo about the same (this was in tablet form).

The first thing that really brought it home to us was the fact that he had to give his driving licence up, although there is always the possibility of having it returned. 

This may sound terribly daunting, but to be honest when you are given this sort of news, you literally have to go from one day at a time to another. There will be ups and downs and you will always wonder 'why us?' My husband was 68 when he was diagnosed and it came out of the blue, with very little symptoms apart from a loss of balance. Everyone is affected differently and I am sure that other people on this platform will tell you that their loved ones are still having a decent, good quality of life after a few years - its so unpredictable.

I did find that if you have a local Macmillan nurse to contact, they are usually worth their weight in gold. You can talk to them about anything and they will advise and help all they can. Always ask questions to any doctor/consultant/nurse you deal with!

In the meantime, rant all you want to on here, its fine, we all do!

As for telling your daughters- we always want to shield our children from anything like this - mine are two 'girls' of 42 and 36 and it was difficult telling them, but had to be done. We were open about anything we knew and told them not to Google brain tumours. Its hard not to, I did, and it did no good at all.

Sorry for the long post, I haven't been on here in a while.

My heart and thoughts are with you and your family,

Take care of yourselves.

Llamalover xx

Hi Amy77

a warm welcome to the group. So sorry to hear about your husband's diagnosis and all that you are going through.

I can empathise with you here as my husband, then 50, was diagnosed with a stage 4 glioblastoma in Sep 2020. It can as a total bolt out of the blue at the time. He had a craniotomy followed by the 6 weeks of oral chemo/radiotherapy and coped really well with it all.

These early days are totally overwhelming for everyone involved in the journey so all the emotions you are feeling are perfectly normal. A diagnosis of this nature impacts everyone so you are definitely not being selfish in your thinking.

My advice for what it is worth is to take this all one step at a time. Write down any questions that you have or concerns so that when you are next talking to the medical team you remember to ask everything. Its very easy to become overwhelmed in those appointments so your notes will keep you on track. Our kids were slightly older than yours when my husband was first diagnosed (20 and 22) but we were open and honest with them. Kids are more resilient than you give them credit for and they will surprise you with how much they support both of you. We were open and honest with them. My husband broke the news to them himself and I picked up the pieces. We were advised right at the start to put my husband's affairs in order which we did, especially in relation to pensions. It' worth seeking sound financial advice on this (yes, I know that sounds/feels money grabbing and heartless but it had to be done)

Everyone going through this journey is unique and their tumour unique too. My husband's impacted him mentally more than physically. He's always been a fitness freak (he's a marathon runner) and once he'd recovered from the surgery and 6 weeks of treatment was able to get back out running. He was given 12-15month back in Sept 2020 and he's still fit enough to run around 60 miles a week. His tumour has impacted him more mentally, causing symptoms similar to the early stages of dementia. Ask him to run a marathon and he's fine- ask him to read an email or go to the bar for a round of drinks and forget it. 

I'll not lie- it's a rollercoaster ride of emotions but you'll get through it. This group is a safe supportive space so please reach out anytime. There's always someone around here who gets it, someone to hold your hand and someone to offer that virtual hug when its needed. You might also want to check out the following groups - Glioblastoma multiforme brain tumour forum - Macmillan Online Community and Carers only forum - Macmillan Online Community. I've personally drawn a lot of support from both.

It’s always good to talk so please 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.

Another key thing here is to look after yourself. Take some "me time" when its needed. It's not selfish, it essential to help you keep going through this journey. Take time to sit and read your book with a coffee, or have lunch with friends or go to the gym- whatever it is that helps you cope. You need to keep doing you for the sake of your own wellbeing.

I've waffled enough. 

I'm sending you a huge virtual hug. You're coping so much better here than you give yourself credit for (trust me)

love n hugs

Wee Me xx

Thanks so much for taking the time to reply x

Thank you so much.  Your kind words are appreciated and it’s nice to hear other peoples stories x