Husband Newly Diagnosed

• Hello Donna. Sorry to hear what your husband is going through. Its a tough diagnosis, happened to me last July.  First thing I did was the practical side, will, power of attorney, dnr and funeral plan. 
  the not driving is dreadful, although Ive been able to keep working. Others will be along with advice from the family point of view I am sure. Take care. 

Sending you and your family lots of love and light. 

Nothing can prepare you for this journey you and your family now find yourselves on and my heart goes out to you all.

After an episode which I now know was likely a seizure in December 2023, my dad had tests quickly followed by a biopsy and Neuro biopsy which confirmed on 28th February 2024 it was a grade 4 glioblastoma, he died on 2nd August after the most traumatic few months of all of our lives. Today is my first Father’s Day without him and I honestly don’t think I have quite come to terms with the loss or started to grieve properly. 

Many patients journeys are much longer and they maintain a good quality of life throughout so please don’t find my story terrifying as it is not intended to do that in any way. Just know that everyone’s journey is different and that things can change day to day, week to week at an almost terrifying pace with brain tumours. 

My advice like Ta shoe has said would be to try to attend to all the practical things as we were too late to get a power of attorney as his capacity declined so rapidly and it caused a lot of practical issues when all we really wanted to focus on was spending time with my dad when he needed us the most. 

Amongst all of the research and reading I did during my dads illness I also learned of the concept of ‘anticipatory grief’ and so much of it rang true, in the days and weeks following my dads diagnosis and throughout his illness I was a complete wreck, I could barely function and could not sleep, crying almost constantly whenever I was not with him. You and your family are grieving now, for the life you thought you all had ahead of you and knowing that even if he outlives the prognosis his life may still be cut far shorter than any of you could ever have imagined possible before now. Be kind to yourselves, look for any help there is out there because caring for someone through this battle is incredibly hard and try anongst everything to cherish and make the most of every moment you have together,

sending you so much love xxx

Hi Donna

a warm welcome to the group. Sorry I didn't get the chance to reply sooner. I had taken a few days away from the forum. 

I can empathise with the journey you have found yourself on. I supported my late husband through the three years of  his glioblastoma journey. He was 50 when he was diagnosed in Sept 2020 and it all came out of the blue. He too was fit, He was a marathon runner. Nothing prepares you for the diagnosis. Life's cruel.

I'm going to be open and honest with you here. It's ok to feel all the feelings and emotions you are feeling. It's ok to fall apart with worry. It's natural. It's the strongest most resilient among us who show our emotions. By showing them you are addressing them and that's far healthier than bottling them up. I cried oceans of tears when G was first  diagnosed and I didn't know what lay before us. You will get through this. Your girls will surprise you with their strength and resilience. My son was 22 and my daughter 20 when their dad was diagnosed and they were my rocks throughout, especially my son.  Take this journey one step at a time. Focus on the facts that you have been told by your husband's medical team as they know the situation best. Steer clear of Dr Google - he's scary.

I've written a few community blogs for MacMillan and I'm going to share two of them with you just now-

Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

“I’m fine”: how do you really cope as a carer? - Macmillan Online Community

The not driving was one of the hardest things for G. He lived for his cars and was a horrible passenger but he adjusted. He was an IT manager but after his diagnosis and a massive seizure two days before his surgery, he wasn't able to work again. He lost the ability to read very quickly due to the location of his tumour. His symptoms right up until the end were cognitive rather than physical.  

Take each step as it comes. If there is anything I can do to help, any questions etc, just ask. I'll not sugar coat it. I'll be honest based on my experience.

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it as you've seen, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

I personally drew a lot of support from this group and also Cancer carers forum | Macmillan Online Community.

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 though I'm sending you all a huge virtual hug and lots of strength. You are coping so much better than you give yourself credit for here (you'll just need to trust me on that).

love n hugs

Wee Me xx

Oh dear that's such a shame comes as a shock but talk to family members on line support too .uou hav to be strong for everyone god bless take care.