Dad diagnosed with Grade 4 gliboblastoma February

[ChrisL85]

Hi there, currently sitting in A&E with my dad for the third time this month, and came across this support group hoping it might offer me some guidance. My dad (65) was diagnosed with a grade 4 brain tumor in Feb this year. He had surgery which removed 75% of the cancer and has received radiotherapy which finished about 6 weeks ago. Since then my dad has been so confused and debilitated, going from a strong healthy man who has an opinion on everything to being very confused, scared and immobile. He has been moved to a care home for at least the next 6 weeks and is on maximum steroids but they don’t seem to be helping. The confusion is being caused by swelling around the tumor and I wondered if anyone has any advice on any other ways to aid the reduction in this? I’m finding it so difficult to cope with the rapid decline in my dad after quickly losing my mam in May last year. I feel pretty helpless and desperate for something to improve his quality of life as at the moment he is bed bound and is pretty much asleep 24 hours a day x

[Tansi75]

Hi ChrisL85I'm sorry to hear about your dad and his current situation.

There are things you can do to help him fight this disease, the first thing is to look at his diet. Cut out all unnecessary sugar - sugar feeds cancer cells and include the following into his diet - blueberries, pecan nuts and turmeric spice, which have anti-cancer properties. I appreciate that he is in a care home at the moment, but I think you should suggest/insist that they make these changes to his diet. Blueberries and pecan nuts have been part of my breakfast since 2010 and we add turmeric spice to rice dishes.

Boosting his immune system is important and I have been using Higher Natures ImmunePlus tablets since I was diagnosed with a grade 4 glio in May 2010, and do recommend them.

Recovery from the surgery and treatment does take time, so don't forget that sleep is part of the healing process. His brain and body have been through a lot since February. I slept a lot during the day whilst recovering after my treatments. I know of no alternative to the steroids and they will have an effect on his sleeping during the night. They kept me awake for most nights when I was on them.

Regarding the removal of his tumour, it is not always possible to remove all of it, but the surgeons do remove as much as possible. They have to strike a balance between removing as much, whilst not causing further damage to the brain.

A lot of how your dad recovers from the surgery and treatment, will depend on the location of the tumour. Mine was in the right temporal lobe, which had to be removed in order to reach the tumour. Despite this, I and my wife have been able to maintain a good quality of life since 2010 and through having a second tumour removed in Feb 2015.

I appreciate you are going through a very difficult time at the moment, but you must do your best to stay positive and also take care of yourself.

There are plenty of people on this site who will be able to provide you with support and guidance, when you need it. If you haven't already done so, I do recommend using the Brain Tumour Charity (TBTC) website, which has a lot of useful information and links.

I wish you both the very best.

[Zhaleh_TBTC Administrator]

Hello and thank you for your post, at what must understandably be an overwhelming and upsetting time. Supporting a loved one affected by a brain tumour can very very difficult. We do have some information on our website, which I hope will help to answer some of your questions: thebraintumourcharity.org/l... We are also here to provide support for you, please feel able to reach out to us, if you want to talk things through, have questions, or if you just need someone to listen. You can give us a call on 0808 800 0004, Monday – Friday, 9 - 5. You can also email the team on: [e-mail]. Warmest wishes, The Support Team.

[Something_blue]

Hi Chris,

So sorry to hear about your dads diagnosis and decline since his treatment. My mum was diagnosed with GBM May 2021 aged 69 she had surgery chemo & radio. It left her v fatigued, fragile, unsteady on her feet (couple of falls) big difficulties with her memory speech & anxiety. Even though at the time when she was on the radio & chemo and coped ‘ok’ apart from not quite finishing the last chemo round due to low platelets it was after it finished she really felt the after effects. I think it was from the radiotherapy that basically frazzled her brain incl some the healthy brain that the radio also goes into around the tumour site. She responded well to the steroids and her consultant said it was due to the swelling around the tumour when it was removed and some pseudo growth. This was towards the end of last year and she’s better now in respects of her mobility and generally looking better so not so tired, drooped in the face and difficulty using her right side. She still struggles cognitively.

Have you spoken to your dads team about it? His consultant or brain tumour nurse through the hospital where he has his treatment?

It’s so so hard to watch them go through it, it’s like a constant broken heart sicky feeling and it’s always worse when they look unwell or are feeling unwell. It’s hard to see them so different.

Sending all my best wishes to your family.

[ChrisL85]

Thank you for your message, we received the heartbreaking news yesterday that they’re stopping any further treatment for dad as his tumor has grown and they feel he’s too poorly to go through chemotherapy, so just keeping him in max steroids and keeping him as comfortable as possible. He’s too unsteady on his feet now so we are getting him a wheelchair so we can try and get him out as much as he feels up to. I’m glad your mam is managing a little better after all of the treatment, it is so hard to see them struggling cognitively I think it was the one thing I was hoping wouldn’t happen as it just feels so alien having to change the way you interact with your parent, but we have to just feel grateful they are still here to share life with 😊 xx

[AdultChild1]

Going through a similar situation with my mother, except the only treatment we were offered was a low dose of radiation for 15 treatment and no chemo. That has been the consistent treatment plan along with no treatment offered from every second opinion we’ve gotten.. so that has been… well, terrible. We elected not to do the radiation, and we were told it would harm her more than help her. She’s home with me now, and we are just enjoying the time we have left together. One thing that has helped my mom’s attention and communication is B12 injections. Prior to diagnosis we found she had a B deficiency, and got through 3-4 injections and one day she woke up, and it was almost her again, almost. That was pre-op. I don’t think I will get that moment again at this point, as her Gliomas (yes, there is a second one) are in her frontal lobes, but maybe that would give you some precious moments with your dad.

[Hast233]

Hello there, this is my first post since I lost my dad to this disease in May, he was 78 and very healthy until the seizures began. I would agree with Tansi75 that everybody is different and sometimes the traditional treatments are not necessarily the best cure. Positivity is vital. After my dad's op which removed 95% of the tumour he was pretty normal again until he started Radiotherapy which sent him downhill fast. The tumour also re-emerged and spread very quickly. We withdrew everything except the steroids and gave him inhaleable CBD (as it works fastest to the brain). This alongside Prozac we felt was having a really productive effect until he had a major fall which just knocked the stuffing out of him. We made the most of everyday with trips out in his wheelchair into the garden or to the beach - ask your occupational therapist for as much help with equiptment as you need to keep his quality of life up. It is a sad thing to watch but never give up and know he is not in pain. The CBD should offset any headaches. We took his steroids down when he started developing bed sores and lost the energy to get out of bed but he did have moments where suddenly he would just start talking again, almost normally. I feel if you leave yourself with no regrets it makes the grieving process so much easier. My dad was 79 and had a great life but I do think if younger the energy for the fight can be much greater. I think everyone on here who has been a carer for a loved one would say that the passing is very peaceful and although very sad, not as distressing as one might expect. I have rambled a bit as I am still recounting everything for the first time but as an only child who had an incredibly close bond with their dad I can say you can move forward, even through the darkest times.

[ChrisL85 in reply to Hast233]

Thank you for your message I really appreciate it. Dad has been given a room in a hospice now which I think will improve his quality of life as hel be able to have his own space and will be easy access to the garden. I managed to get him into a wheelchair yesterday to enjoy some sunshine outside which we both really enjoyed, i completely agree about maintaining a positive outlook although at times this is really difficult I want to be able to enjoy as much time with dad as I can and make some lovely memories while he’s still aware of a lot that’s going on xxx