Dads new diagnosis of grade 4 multifocal glioblastoma

Hello Paige,

I'm very sorry to hear about your dad and his diagnosis my husband was diagnosed a similar way in that he started to the most bizarre things like heating bread in a frying pan to toast or being  unable to work the simplest technology.

I've just spent the weekend with my son who's 25 yrs - he's only recently moved out,it breaks my heart to think of him losing his dad at a young age.

My husband had surgery, radiotherapy and chemo,he is 18 mnths post diagnosis and is in full time work, exercises 3 times a week - he hasnt had any ill effects from the chemo.I know on here everyone's follows quite a different path and I think by comparison he is physically doing well .

From the very start he started the Keto diet,it may or may not have benefits but it's something you may want to have a look at.

I'm trained as a biochemist so I've a good understanding of medical results, which is a double edged sword.You well certainly need a few weeks to let the initial shock and almost panic phase to pass - from there you will hopefully to be able to make some decisions as a family and maybe talk things over again with consultant or Macmillan nurses who can give you advice and support you.

I wish you well, such a cruel disease,

Virtual hugs to you and your mum  

Hello Paige,

I feel gutted for you and your mum, this is heart breaking stuff. This disease stinks. 
My husband has now his second inoperable tumour and is taking chemotherapy. He lost most of his sight in less than 2 weeks. An intelligent man who ran his own Quantity Surveying company for years. 
This tumour was diagnosed August this year. I find that when his symptoms are worse, taking steroids helps reduce the symptoms.

This disease shatters our worlds, it is cruel and just stinks.

My sister in law has done a lot of research into the Sativex trial and Oncologists that can prescribe Medical ….,,,,, ! along with the Chemo! This is private CHC treatment. My head is not able to manage research .We have a daily routine with 2 small glasses of wine each evening.

 All of us in this boat feel for you, your mum and dad, 

Take things an hour at a time.

God bless.

Hey Paige xx 

Im so sorry to hear about your poor Dad, it’s so unfair. 

I was an older than you when my Dad was diagnosed, I was 30, but I still feel like I was his little girl, and still feel so robbed by what happened. 

To be honest I don’t have much advice on the supplements and for the questions you asked but I want you to know that you aren’t alone here. There are some posts from others in their 20s like yourself who are going through or have been through this awful journey.. I used to find myself scrolling back through this forum for HOURS just trying to find out information.. probably obsessively but it definitely made me feel like I wasn’t alone. I really felt like no one outside of my family truly understood so I hope if nothing else you can find some support here <3 

I don’t know how this journey will look for you guys as everyone seems so different but I do recall those first couple of months after diagnosis being the worst for me. The shock, the grief for what was to come and for watching the changes in my Dad. God it was so awful… but get through the days and soon you’ll adapt to the new normal.. it gets a little less painful. 

So sorry you find yourself here, it is horrible and unfair and it’s ok to be sad. We get you xx 

Hi Paige,
Welcome to the group and so sorry to hear your news. I cared for my wife who had a GBM.

Your dad's symptoms are quite similar to my wife's. She was "lucky" enough to be able to have surgery though as she had just one large tumour they could debulk.

One thing we did find helpful was a neuro physiotherapist we found through her work health insurance scheme. It might be worth checking with the oncologist or CNS to see if there's anything you can access through the NHS. They often work with stroke victims and I think should be promoted more to people with GBMs. We found it helped with little things that just made living with someone with a brain injury a bit easier. Like for example leaving post-it notes around the house to remind her of things and clocks that show whether it's waking up time, or lunchtime etc...

The steroids you'll find become a real balancing act as they can really help control swelling and any headaches but also come with a range of side effects. The main one we faced was increased appetite which can cause real challenges. 

Below I've put some of the info I give everyone new to the group so I hope some of this is useful and please do use this group to ask questions or just vent how you're feeling. As others have said you're not alone.

Sending virtual hugs,

Chris

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There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.

When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.

Has your dad been offered any counselling at all? Either way it’s always good to talk so please remember you can 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.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.

Thank you for getting back to me and I am so pleased to hear that your husband has some normality back in his life, it has brought me some happiness in this whole situation. 

I understand what you are saying about you being a biochemist and it being a double edged sword as I am a final year medical student graduating in July next year. As you said I can understand the results but I also have my clinical head on watching for every bit of deterioration. I feel on edge!

Thank you for sharing your story<3

Hi Sandy,

It is so heart warming to see that people are going through similar situations as I have never heard of this type of brain tumour before. Its very easy to feel like you are on your own.

My dad too was a very independent, intelligent man and a fitness fanatic! How has your husband found his chemo? I hope him and your family are all coping well (as good as you can). 

Thank you for informing me about the sativex trial that is something I will have to look in to.

thank you for your reply and god bless you and your family <3

Thank you so much for your reply.

This situation is absolutely horrible. Just like you said I feel as though I am a little girl again and nothing will make me happy except my dad. That is all I want.

You are right though I do feel a lot of comfort just by being part of this forum. I think it is difficult because I am my dads only child I dont have siblings who understand my pain. But it has really put my mind at ease to know we had a similar experience. No matter what age I am/ you were it is never a good time to loose your dad.

I hope you are coping well <3

Hi Chris,

You sound like a superstar:) It takes massive amounts of strength and compassion to care for a loved one. the neuro physiotherapist sounds like a great idea and this isnt something I have considered before. 

Also the postit notes idea sounds good too as he is forgetting things. I agree with the steroids aswell. we notice that when he is on a higher dose his symtoms seem more controlled however he could eat the full house down !

Thank you for your reply and you have really helped me

god bless

HI Paige

a warm welcome to the group. So sorry to hear about your dad. Life's too cruel.

I supported my late husband through the 3 years of his glioblastoma journey. Our kids were 20 and 22 when he was first diagnosed and and 23 and 25 when he passed. It's been a lot for them ...for all of us....to process so I can empathise with the journey you are on.

My late husband was a fitness freak.(a marathon runner) and his diagnosis came out of the blue. He had surgery and 6 weeks of radiotherapy/oral chemo then said no more. He refused all further treatment. His tumour/s presented themselves with symptoms more like dementia than cancer which brought it own challenges. Throughout the journey, as a family, we were led by what he wanted to do (within reason). Physically he was still fit and active up until a few days before he passed and was still able to run up until a couple of months before the end. 

I'd love to say he had a healthy lifestyle and diet but apart from running obsessively, he ate what he wanted, drank too much and would devour every sweet treat in sight. He did however live life to the fullest. He was closer to my daughter than my son and they were able to spend time together making memories. They went skiing and had a trip to London where they did the O2 Arena tour that involved walking over the domed roof. 

Personally I think the best thing you can do for your dad is spend time with him. I don't mean to scare you but the regulars on here know I'm always open and honest. Depending on what drugs your dad gets prescribed as the journey progresses, they may make him bad tempered . Steroids made G nasty and he said some extremely hurtful things to us all. Should this happen, don't take it to heart. Its the tumour talking not your dad. 

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

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 I'm sending you a huge virtual hug and lots of positive energy. 

love n hugs

Wee Me xxx

Hello. 
I come from a different aspect as I have the condition, rather than being a relative. (Mine is a wild type) . When I was diagnosed I said I wanted everything as normal as possible as long as possible, and so far thats been achieved.  I had, and still have very clear ideas of what I want. I work full time and still do all my sports and hobbies.

I have dealt with the practicalities, wills, desired EOL path etc. 

I would think your dad is feeing bewildered and overwhelmed. it sounds as if his path is harder than mine, as I had surgery and radiotherapy as well as chemo. Chemo may not cure but the fact it has been suggested , means it may give time. 

Theres more negativity than positive stories. I feel there is hope.