Totally overwhelmed

Hi Jobo 

Its a very familiar story and I'm sorry you are going through this too. My husband (51) was told he had a brain tumour in A & E alone in August after what he thought were trapped nerves in his back causing walking difficulties and weakness in his arm. The news is awful to deal with as you are entering the unknown. In September after 1 cancelled surgery my husband had the tumour removed and only a microscopic amount was left. 

I have a 15 year old son in his last year at school. He's incredibly brave and wants to know everything. We found out mid September it was Glioblastoma grade 4 the worst kind of Cancer. I remember feeling numb and angry this had happened to us and destroyed any future plans we had. We decided to stay positive as after lots of reading there seems to be many long term survivors and I'm hanging on to hope he will be one if them.

We're out of the numb stage and last Thursday he started Radiotherapy and Chemotherapy which was going well. We went away to our Caravan at the weekend and he had a grand mal seizure which was horrendous. This has knocked the positivity. When he came round I called the Cancer Hospital who wanted to see him to check there was no bleed or anything sinister. Thankfully there was nothing. We got some anti seizure meds and Steroids and mt brave husband is back on with treatment this week. Here anytime for a chat, take care, you're not alone on this xx

Hi Jobo

a warm welcome to the group. SO sorry to hear about all that you, your husband and family are going through. Nothing prepares you for news like that.

I can empathise with what you are all going through. My husband (then 50) was diagnosed with a brain tumour in Sept 2020. He found out on his own at an appointment. He'd had a funny turn out running where he realised that he couldn't think of the word for pavement then realised he couldn't understand any words or language. Daft beggar kept running and gradually the reading/language ability returned as he tried to read the names on the parked cars. His tumour is/was a Glioblastoma (stage 4). He had a seizure 2 days before his surgery, scared the living daylights out of us all and to be honest, has never been the same person.

All of that said, he's still physically very fit. He ran the London marathon at the start of October in 3:33:34. His tumour was also the size of a golfball but was in Broca's area of the brain that controls speech/language/understanding. His main symptoms now are very similar to someone with dementia.

We were fortunate not to be kept in the dark for too long before we knew what we were facing - 3 weeks. Not knowing is a 1000 times worse than knowing what you are facing so I hope you get a plan when you speak to the dr this week. Can I suggest that ahead of the appointment and before any follow up appointments that you write down any questions/fears/concerns you may have and take the notes with you. They will help keep you on track and make sure you don't forget to ask something that's important to you all. Those initial appointments can be very overwhelming.

This group is a really safe and supportive space 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 here.

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.

For now, try to stay positive. Avoid Dr Google - he's a scary dude. Take this one step at a time and please remember to breathe.

Sending you all a huge virtual hug, positive energy, love and light

Wee Me xx

Thank you so much. My husband is also a runner and his fitness is very important to him, he can't bear the thought of not being able to function and have quality of life.  He's convinced he's already dying and his mental health isn't good with it all. I've tried to avoid Google! I've done a whole load of questions too, I'm much better in practical mode.  I feel like my heart is aching with it all but hearing other stories about positive outcomes really helps.  Thank you so much xx

Good afternoon Jobo, I’m so sorry you are in the current situation you are experiencing. I find it completely relatable. 

My partner and I are more or less at the safe stage at the moment. After a few months of odd symptoms, including speech issues and headaches, she has been diagnosed as having a brain tumour which is beloved to be 4x4x4 cm in size.

She has been allowed home for now with steroid and anti-seizure medication and we now await a response/appointment to see the specialists in Edinburgh. It all just feels like a cruel waiting game hanging in limbo. 

We too feel as though we are in some sort of surreal bubble.

I hope you get some answers soon.

p

So sorry to hear that you are going through this too.  The waiting is agony isn't it.  My husband had his appointment on weds and has g4 glioblastoma- his op is scheduled for 11th November.  We are both so frightened, life feels like a fog.  I fear this will be a very long 2 weeks! 

Hi Jobo, you can only take things a day at a time sometimes an hour at a time. We started on this journey last month, tumour was discovered on 11 sept and my husband who is approaching 50 had surgery  just over 2 weeks ago. The fact he was having surgery did not hit me until he was in theatre, i think i was in denial but it went well. The NHS are amazing and he is recovering well, he came home fter 6 days. dont think too much about anything until it happens. He too has also been confirmed with GBM and will be starting radio/chemo in approx 2 to 3 weeks. Its not easy i know but you have to stay positive, i have found so many positive and inspirational stories in different forums and thats what you have to hold onto. None of us know what the future will bring, but my advice is let your emotions out when yu need to, and i find focusing on work really helps as it puts my mind elsewhere., or focus on something else you enjoy as a distraction. I hope and pray ure hubbys  surgery goes well, the surgeons are amazing. Once he has had Surgery you will feel better and whist you are waiting just try to keep busy. Take time for yourself too, sending poitive vibes and hugs to you and everyone else on here. Remember you are much stronger than you think, all the best xx

Thank you so much, the consultant told us that he may be able to come home the day after surgery which I find hard to believe!  My husband seems ok at the moment and is pretty much how he was before the seizure  I just hope it goes ok next week for the operation.  

HI Jobo

they don't keep them in hospital as long as you think. My husband had his op on the Wednesday and got home on the Friday. Unfortunately, he developed an infection and was re-admitted on the Sunday for 4 days. 

Hope everything goes smoothly when the time comes

love n hugs

Wee Me xx

Wishing you all the very best and stay positive, im sure the Op will go well and then you can put this part behind you. The waiting is difficult i know, but it is a relief when its over and you can focus on recovery, lots of positive vibes and good wishes, you got this!