My Dad was diagnosed with GMB stage 4 in his frontal lobe in mid September this year. It has been a scary, stressful, traumatic rollercoaster since then. Dad is currently on palliative care at home. Radiotherapy would only acerbate his symptoms. My Dad is an otherwise fit, healthy, positive and cheerful person. He has been so characteristically brave and stoical about it, but I can see he is scared as we have all had tears and there are times, now his symptoms are deteriorating, when he looks so sad. I'm not sure what I need here, but just reaching out to see who else is going through this. I am doing my best to help my mum and our family and my Dad navigate this next phase with courage and calm, but sometimes I feel so floored.
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WhiteStripes2024
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Everyone is at very different places with this beat. My husband has GBM4 front left lobe, had most of it removed then radio and chemo, he's also taking sativex (clinical grade canibis) and prozac both have helped attack the tumour and he is on Optune ttf (unless you have a particular insurer you wont get it free, self funding is circa £18k per month). He also went straight onto zero sugar and Keto (Carbs and Sugar feed the tumour).
I'm not going to pretend to know what you are all going through, I have been on my own rollercoaster, but know this, you have ears and virtual hugs around you, you have a sounding board and you have a place to scream.. protect yourself, spend time with dad.
Thank you for sharing your story. I'm sorry your husband has been sick with this cancer too. It sounds hopeful for your husband. I really hope he makes a good recovery. Thinking of you.
It's unimaginable the veracity of this disease. My dad is 75 and the doctors said radiotherapy in his case could really impact his quality of life further. It's been so hard deciding what to do. He's already experiencing communication, memory and processing issues. Putting him through radiotherapy where he may not know what's happening and could feel scared felt wrong. I hate losing my Dad, but I also hate seeing him suffer. I've cried most days but tears get no where. I'm going back tomorrow and will be playing him his favourite Dire Straits songs and other rock and roll.
Did they consider the proton beam which is more targeted. They wrote my husband off giving him 12~15 months to live. We refused this and did our own research and bought possibilities to them. Like I said it may not be applicable for everyone and your dad seems like he’s suffering. My husband is 46
Do t be afraid to cry, I cry but also smile at seeing the wins. My kids are suffering but at the same time we make sure to make life count. Counselling was key. My son has only just accepted it and I already see some weight lifted off his chest. He is 13 my daughter will be 11 next month.
Make memories. Take a video of him and ask him questions about his childhood to remember him by. We did this in the summer. Cancer sucks!!
I am so sorry you and your family are going through this terrible illness. I lost my mum 2 months ago, she had GBM 4 front right area. She had a craniotomy but after that only palliative care was offered as Chemio and radio would add more damage. I can only advise you to spend as more quality and loving time as possible with your dad, and to remove any people who doesnt help or create anxiety in your direct family. The few months my mum was slightly ok we let her enjoying things she liked, such as her favourite biscuits, a birthday cake, which doctors said there is no scientific evidence it may harm the process, especially in palliative care, the nutritionist recommended mediterranean diet. I am being honest, when palliative care is only offered, there isn´t much to do but keep your loving family member happy and enjoying life within possibilities. A big hug to you.
Thank you 💗 I feel like you know exactly what we're all going through. It sounds very similar. I'm so sorry for your loss, it sounds very recent and so raw.
I'm having nightmares about my dad suffering and feeling sad. It breaks my heart when he cries. I'm trying to be strong for him and my mum. She's been incredible but I worry for her too and her mental health. This has been such a trauma. 💔
hello there. I am so sorry and sending you love. My Dad died last month after being diagnosed in April. He had surgery but was too ill for further treatment. I’m still in shock and processing this but will say just be with him. Let him know you love him and that you will be OK. I focused on making sure his palliative care was good enough (that’s a fight in this country) and keeping him at home. Let him have what he wants when he wants it. And just keep on being present. Towards the end my Dad stopped communicating much and went very inward. I just didn’t want him to feel alone. He died at home with his family around him. Urgh it’s so devastating but I take comfort that I was able to be by his side and let him know how loved he was.. it’s easy to say ‘take care of yourself’ but I know that’s very hard when you are in the thick of it. But don’t be hard on yourself and take each day as it comes. It’s ok to feel floored and overwhelmed. It sounds like you are a pillar of strength to your family.
if you have any questions I’d d be happy to help. Love and strength xxx
I'm so sorry to hear you experienced this too. It's so traumatic isn't it. Such a shock and it comes so quickly. I barely feel we've had time to process and are racing from decision to decision on his care while he rapidly deteriorates.
Sorry to ask but do you think your dad knew what was happening towards the end when he couldn't communicate? That's what scares me the most. I'm sorry to ask you. I just don't want him to be scared and be unable to tell us.
I have two young children and have to keep up family life for them. If it wasn't for them I think I'd be so depressed right now. But life is for living and I know my dad would want me to make the most of things. It's just hard when I feel time has stopped stull and we've slipped through some crack in reality to a very dark, horrible place.
Oh my love bless you. Everything you say rings true. But I got through it and so will you. Regarding your question. My Dad was the most stoical person I know. He didn’t complain once. I am sure that the loss of autonomy and dignity will have been hard for him. But all I could do was care for him in a calm loving way but still treating him as my Dad. I didn’t want him to feel that I was shocked or embarrassed at any of the care I had to give him. It was the last act of love I could give him and I focused on that. We did wonder whether he was feeling more pain or frustration than he was able to communicate but we will never know. In the last week he passed into a coma and to be honest it was a relief in some ways as he’d stopped sleeping and was trying to get up all the time before that and his mobility was so bad. Once the hospice team got his pain and agitation under control we could focus on just sitting by his bed and talking to him holding his hand. Im not sure if he was fully aware of what was happening. If he was he was so accepting and strong I know he would never show his fear to us anyway. It was hard and devastating but if I could get one more night of sitting by his side I’d do it in a heartbeat. Love to you.
Can I also say. Please don’t worry when people say have you tried every option, cut out sugar etc. I’ve had cancer myself and researched every option and certainty didnt blindly accept what drs say. But with this disease, especially in those who are older, very often there is not much that can be done. They took 90% of my dad’s tumour out and within 6 weeks he was having clinic tonic seizures as it had grown back very very fast. Sometimes you just have to accept that we have no control and focus on the time we have. Xx
Hi I am so very sorry and let you know that I know much pain and hopeless you feel. It has all started last November when my husband diagnosed with GBM grade 4 . He had operation, TMZ , radiation therapy and is on TTF now. It has been a very very tough year - we have our very low days and so so days. I wish you and your family all the best and able to have some good times with your dad .
Sorry to hear about your father - cancer is so awful/evil. I was diagnosed with a Stage 4 GBM back in June of 2023. I underwent surgery, a clinical trial at NIH (daily radiation plus 2 different chemo agents) and then 6 cycles of TMZ. The chemo was pretty rough, but the radiation wasn't really that bad (other than having to lie still during it). It really depends on his goals of care are - if he wants to focus on quality of life/dignity, then he may want to elect a Hospice path. If he wants longevity at all costs, then proceed with the treatments. Either way, a palliative care consult would like be a great help. I wish you my best, not an easy road to travel down.
I'm sorry to hear about your dad. I was diagnosed 4 years ago and had the normal treatment of radio/chemo plus 1 year of chemo. I don't know the details of your father's condition but would encourage you to explore in detail the possible treatments that may be available. I was given 3 months without treatment but have manage so far with. I wish you you and your father well. Feel free to contact me if you think it would help.
Hello, I saw your reply to WhiteStripes2024. My husband was diagnosed with a GBM this year. Would you mind telling me did you have an operation before you started radiotherapy and chem. was the chemo in tablet form? My husbands tumour is inoperable. initially we closed down but now keen to know of others in the same situation.
Thank you so much for your prompt reply. So are you being monitored with periodic MRI scans or are you on your own so to speak. It sounds like you are doing really well. Sorry for extra question but my husband was only offered 6 months of chemo tablets.
After the normal radio/chemo treatment I had 1 year of further chemo. That was 1 week on / 3 weeks off for the year. I am now on 3 monthly MRI scans to check there is no growth. I have a very supportive oncologist that I can ask any questions to
Sorry to read about your dad's diagnosis. I was diagnosed with my grade 4 GBM in May 2010, you might find some of my previous posts, useful, especially my alternative anti-cancer treatments of ozonated water and the use of 3% Food Grade Hydrogen Peroxide (multi purpose); use of Higher Natures Immune Plus tablets to boost my immune system.
Have you cut out all unnecessary sugar from his diet, which feeds cancer cells?
Blueberries, pecan nuts and turmeric spice have anti-cancer properties, I include the first two in my breakfast cereal in the morning.
I know it is tough, but you must all stay positive and never give up on hope. If you have any questions, please do ask them.
Thanks. My dad is 75 and already has some horrible symptoms. I think at this point it's just about trying to keep him feeling safe and calm. He is very tearful at the moment. I find it quite distressing. 😔
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