My father (76 yrs) was recently diagnosed with a GBM4 and is due surgery next week before he goes on to start radiotherapy. He has been given really poor odds of surviving 2 years given the size of his tumour (55mm x 45mm x 35mm). I am at a total loss internally as this has come completely out of the blue and he has never spent more than a few hours in a hospital. I don't know where my emotions are at and haven't really allowed myself to get upset (until I wrote this message....). My dad is flipping between hope/denial and anger which I understand, but it's so hard trying to work out how best I support him.
What tips or advice would you suggest I look at to support him in the best way possible?
Thanks in advance.
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richierich1979
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I have placed some posts on the Discussion Board, which you both may find useful.
The best thing you can both do is to try and stay positive and concentrate on living your lives together in the best possible way, for however long that may be.
It is possible to fight this disease and live beyond a negative prognosis- see my posts.
Diet is very important and I advise that your father cuts out unnecessary sugar, especially alcohol, which feeds cancer cells. If possible keep to a healthy diet with fresh foods and include blueberries, pecan nuts and turmeric spice in his diet, which have anti-cancer properties.
I wish you both the very best for the journey you have both begun, there is plenty of support for you both on this site and the BRIAN APP. Laugh as much as possible, which is also a great healer.
Stay strong, positive and take each and every day, one at a time, as with each step you take. Do not waste energy/time on researching outcomes, etc. Everyone's experience of a brain tumour is unique and individual. You can both get through this together.
Hi Tansi75, thankyou very much for your post. Some useful advice there and I have started using the Brian app. My dad was involved in pharmaceuticals as his profession so getting him to adopt a cancer unfriendly diet has been relatively easy! We're still waiting for a surgery date as it was postponed due to an infection. We're hoping it will be next week so we will see what happens!Many thanks, Richard
i don’t know if anyone else has experienced this but i’ve been receiving notifications on my fitbit if atrium defibulatuio Defibrillation s so i called my rapid response line yesterday and they advised me to go to a and e for an ecg. i spent 5 hrs there and had ecg but never got to see a doctor. now i’m worrying i will have a heart attack and die. i awake early and spend hours crying and worrying as ive not sorted out my funeral and will. i live alone so have no one to talk to in the early hours.anyone else can relate to this?
I've just seen your message and your words resonated with me.How did your father's surgery go?
My father (72)) was diagnosed with GBM4 in April. As your experience - this came out of the blue and has shaken our world since then. I'm afraid to say that my Dad died last month. So, all very raw, but I do find myself thinking about the past 7 months daily. Despite the turbulence, there were many sweet moments. So if nothing else - my tips would be to try and hold onto them and make the most of 'good' days/weeks - I found that hard to do amongst the busyness of looking after my Dad and making various arrangements for support for him. It was hard to know how best to support him emotionally. I think we just tried to go with whatever mood he was in, not take anything too personally when he was angry. At times he would be really, really angry but then later on break down in tears. That was easier in a way as he would accept comfort then, & reassurance of our intention to stick with him through whatever happened.
Where in your Dad's brain is the tumour? My dads was apparantly deep and in the parietal and occipital and probably in temporal lobe by the end (although I understand that the effects of the tumour is guided by the changes in connections in the deeper matter as well as the actual lobes). So I'm super aware that my experiences will not necessarily be the same as others.
Dad has surgery and then radiotherapy. He recovered well from surgery and they removed as much of the tumour as possible. The radiotherapy sessions themselves were fine but towards the end seemed to affect this short term memory and from that point on he really got incredibly fatigued.
I don't know how much advice I can really give - still processing it all now.
What I, and my Dad & family, found helpful was the support of trusted friends and church family who rallied around in very practical ways and allowed us to 'vent' as we needed to.
Dad being up for seeing friends was definitely a positive - he had daily contact with friends and this was often the highlight of the day. Certainly when he was exhausted - it was important for him to muster up the energy to seen friends / grandchildren - which for sure felt the best use of energy for him.
My Dad was capable, intelligent and a problem solver, never ill - pragmatic but not one for talking about emotions. Immediately after the diagnosis he shared various info about financial affairs with us which has proved helpful since.
Practically, I wanted to educate myself and found the Brain Tumour Charity website a great source of info which I could share with Dad/ family. For emotional support, the Brain Tumour Support Charity were brilliant. Particularly the online support group for friends and family of someone with a high grade tumour. (They have a group for men with a tumour too).
Healthcare professionals were warm and pleasant but I didn't feel there was a holistic view of care - mainly focussed on medical treatment rather than impact on life. I guess this is a resource issue. I did look into changes in diet (as Tansi75 has spoken about) / anti infammatory foods, but Dad wasn't up for that at all, and so we tried to go with the approach of eating what he fancied.
I was keen to support my Dad to maintain as much independence for as long as possible, alongside the surgery/radiotherapy. I had the sense that creating / maintaining the best environment was key - and this proved to be worthwhile. So getting our heads around Dads routines / exact location of where things were kept - and keeping everything the same so that he could locate them with losing sight and losing ability to process information.
I reached out to the Social Care sensory team (Dad lost parts of his vision quite rapidly) and a local blind charity who gave very helpful practical advice. RNIB online shop too. I felt rather fobbed off a number of times by professionals, but persisted and explained the diagnosis when told about long waiting times.
I also asked the GP for a referral to physio/OT who provided shower aids and wheelchair. I think this probably would have been suggested at some point, but having the bathroom aids early on definitely helped Dad keep independent on days when he was really tired, and right to the end were invaluable in keeping Dad mobile.
I also realised that making adaptations earlier rather than later would help with a sense of familiarity when things got harder for Dad.
There are so many details I don't want to bombard here - but happy to reply further as is useful. We found ourselves second guessing my Dads wants / needs a lot and being ready with a solution to present to him. His life long problem solving and rationality soon went 🙁 He struggled to process information - so we learnt to talk in succinct sentences, offer little choice, use visual aids as well as talking. Sometimes not talking at all!
All in all, a challenging time but there really were very special moments which I'll treasure. Family had more time together than usual. I had more time together with my Dad than usual (I was fortunate to be able to take some time off work) which I don't regret at all. I felt it was a privileged position to be with him and advocate for him, as well as the times just chatting together.
Well, I didn't intend this to be such a long post.
Wishing you all the best Richierich1979 - I think we all do the best we can, and there really isn't a 'right' way! Keep going and the old adage 'one day at a time' certainly served me well.
Hi HRuth,Many thanks for your message and firstly let me express my sincere sorrow for your loss. One of the hardest things to accept in these situations is how unfair it all is. It's brutal. Hopefully you'll take some solace in the fact that I very much appreciate your message and words of advice.
Thankyou very much for your detailed and candid response. There are some great tips and pieces of advice in there that either we have started to implement, or certainly will look to based upon your advice. There were also some points that I wasn't prepared for, such as future medical complications that we might have to deal with. Your insight will help me be a little more prepared for that should something else happen.
Dad's surgery has been postponed due to a urinary infection and low sodium levels. The infection has now cleared up and we find out tomorrow if his sodium is high enough to operate, if so, Friday is the day. Feeling quite apprehensive naturally, and want the tumour out, as my dad seems to be declining every day.
His tumour is in his right temporal lobe and considered a "good" location to operate on.
Dad is getting really angry lately, and putting my mum under an enormous amount of stress. Me and my brother are doing everything we can to support, as are M&D's friends which has been really helpful (one friend has offered to manage the radiotherapy rota for driving dad to and from hospital which is amazing). I'm worried for mum though, she's been getting palpitations and also burst a blood vessel in her eye....all down to stress. It's such a difficult situation.
On a lighter note, Mum had already bought dad a seat for the bath, when it arrived dad joked he wanted one with a hole in. As you say, trying to find some humour in it all is really important.
Personally, I'm still lost. I think I'm still in shock with it all but your words of advice will certainly give me food for thought in terms of what other support, I, and my family, will need.
Hi there, so much to get your head around isnt there. Glad you've got good friends supporting. Wishing you strength as you and your brother support your parents - and each other. Have they got a good GP who knows the situation? Someone to have the overview and consider your Mums needs too. All the best 👍
Hey, sorry for such a late reply! Been in a pretty dark place over the last year. My father sadly is into the final chapter and we've been told he has 2-3 weeks left. Have moved in with both m&d as of last night. Battling that as well as my father in law who had a major stroke a couple of months ago. He can't talk, swallow or move etc. My wife and I are at a pretty low point in life, verging on depression. Just all feels hopeless right now...
Hi richierich1979So tough Your wife and yourself must have been through so much heartache and stress with both of your fathers becoming so ill. Moving in with your parents I'm sure will be a support. I know no words make it better. You'll be doing your very best to figure out what helps. It's so tiring. Thoughts are with you and I hope you have some moments of calm to be with your Mum and with your Dad in this 'thin place' xx
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