Hi Live123,

I'm so sorry to read about what you're going through. I can only imagine how tough this is to deal with and I can certainly understand the feelings of helplessness.

I'm sure you're doing a wonderful job of supporting him and that's all you can really continue to do, but it's important that you get some support for yourself too. Whether that's here on this forum - do use it as much as you'd likie to write down any feelings, thoughts or worries - and there are of course organisations who can offer support, such as Macmillan or perhaps a local Maggie's Centre.

I hope things go OK with the upcoming treatment. It's cliched but try to take things one day at a time, and like I say make sure you have others who you can speak to - friends or family, this forum, and/or other organisations.

Ben
Cancer Chat Moderator

Hi Live123, 

my husband was diagnosed with a brain tumour on 16/11/2019. He had suffered a seizure 1 week prior and was discharged with an appointment to be seen at a seizure clinic. The following week I drove him to A&E as he was displaying bizarre behaviour. From there they did a CT scan and found the tumour. He had emergency debulking surgery on 18/11/2019 as there was too much pressure in his head. It was utterly devastating. We endured quite a traumatic transfer to a specialist hospital as I felt he was wrote off as soon as he was wheeled to the ward. We were harshly told he had a grade 4 GBM and his outlook was 3 years. It has been a truly agonising of waits to be advised his tumour is a low grade 2. He had is 2nd resection on the 02/01/2020 and came home a day later. We are now waiting for oncology to see what his next stage would be. He has surprised the drs at every turn as the FMRI scan he had 2 days before surgery has shown the tumour what was left behind after the 1st surgery has actually shrunk in size. I totally understand about constant hospital appointments. My husband is feeling pretty low that he has lost his drivers license and his employer has terminated his contract as he had only been working there for 6 weeks. (We were told he would receive more financial support if they did this!) my husband has been so strong throughout this and I'm hoping for a good prognosis when we are transferred to another different hospital for oncology. I'm hoping and wishing with all my heart for your son. I feel also my husband has been robbed of his life (he is 35) our lives have been smashed to pieces these last 7 weeks. 

I am so so sorry for you all. This is such a cruel disease. Like you, our lives have been shattered overnight. Although every case is different , there are many similarities between our stories. Our son also had news that it was likely a GBM but after an agonising 5 week wait for histology it turned out to be grade 2 although is treatment so far has been that of a grade 4. He finished a 30 session course of radiotherapy on Friday. Only had Christmas Day off. He has one month to recover before a year of chemo. I can't even begin to imagine the impact it will have.  Like your husband, loss of his job and license have been the hardest things to accept. He's coping so well and has done through it all even though he's lost weight , most of his hair and has skin burns. I'm struggling with the thought of losing him so much. The way they are talking , he won't even reach 30.  I'm so sorry this is happening to you too. 

So so so so sorry for what you're going through. My husband is strangely doing amazingly well. He was lucky to be under the care of the most amazing surgeon who has the most compassionate nature I have ever known in the world. After the 1st opinion of one registrar only from a CT scan, that he had a GBM, to be given (what I feel is a lifeline) a low grade 2 felt like a lottery win. His surgeon explained he can never cure him but his prognosis is better that that of a GBM. I like you, don't want to lose him at all, we're meant to get old together, but I have now had to accept that I have had 14 years of loving him up to now and any day, month, year from now on is an extra bonus. We have a wonderful 9 year old girl who knows her dad won't be here forever but everyday she wants to make him proud. And she is one gift this awful 'thing' won't take from me. 
best wishes to your family I will be thinking of you over the coming weeks. I will keep you in our prayers. 
All our love 

Family PDW917

Hi Live123 & Pdw917

I am so sorry to hear about your son and husband. I know just how unbelievable and devastating it is to hear your loved one has a brain tumour. 

My husband is 33 years old and was diagnosed with a grade 4 GBM on 13/12/19. It is not possible to operate on his tumour, but he is starting 6 weeks of radiotherapy and chemotherapy on Thursday. I feel like our life has been turned upside down and can completely relate to llife being one appointment after another. 

Pdw917 it’s great news that your husbands tumour looks to have shrunk. Like you we are hoping and wishing for the best possible outcome. My thoughts and prayers are with you both and your families. I feel like I can relate to so much of what you are both feeling, please know you are not alone. Sending positive thoughts your way. 

Hi, I'm so sincerely sorry for what your husband and yourself are currently going through. I'm hoping the radiotherapy helps you guys. I've been through every emotional state possible and 7 weeks later, we have accepted this is our path now. I will keep you also in my prayers that his treatment helps. 
 

Family PDW917

Hi Live123,

Just thought I'd let you know my husband was diagnosed with the very same tumor,

He had his operation 7 weeks of radiology and 1 year of chemo,yes a very tramitic ntime for everyone involved,butnhe took it like a trooper and lived 12 years longer than they ever though possible,so hang on to every bit of hope and prayer you can,and enjoy the good days and chill on the bad days,sending you all blessings,

Ange!