Hope or preparation for death?

[AvocadoForever]

I would like to hear your insights on my huge dilemma. My 63 year old mom was diagnosed with glioblastoma grade 4, had a successful surgery with 99.99% taken out. On Monday we go to an oncologist who will tell her and my dad what this diagnosis actually means. So far, they know it's "bad news" but they didn't want to read or hear anything about it. I think they kinda count on 8 years as the average survival, which is a misunderstanding from an earlier consultation with a doctor before the operation. I know they will be absolutely crushed to hear about the 12-18 months, and especially if the doctor tells them what problems to expect in the final months. It's so scary I can't even think about it myself :((

I am going to the doctor's with them on Monday, and I have a huge dilemma, how to talk to them, before and especially after the meetup. If the doctor tells them the average life expactancy, should I stress that there are exceptions (such as Tansi75 whose posts I really enjoy reading), that miracles happen every day, and should I stay positive? Even with this desdlu diagnosis? Or should I help my parents prepare for what is most probably expecting them?

I am so worried for my dad, who has a heart disease. I am worried that if he sets his hopes too high, he'll be devastated every step of the journey. On the other hand, I think that if my mom loses all hope and focuses on death, it'll all go down very badly very soon.

I am spending as much time with them as I can, together with my 4 month old baby who is their greatest pleasure right now. These days, we are having an amazing time together, and I feel almost surreal because my mom is here and laughs with us, but at the same time she will most probably not be here for very long, and I think of that 100 times a day. My head can't quite capture this. I am going to find a psychologist for myself and for my parents, if they are willing, but right now, any thoughts from this community would be highly appreciated. Thank you.

[Dex2010]

my husband 47 was diagnosed with stage 4 GBM in May, same diagnosis. However on further testing they found it was methylated which meant that it would respond better to diff chemo and a trial of tmz up front instead of eating for reoccurrence. Have they tested for methylation?

There are a ton of trials out there. Diet is key! My husband has gone 95% keto. Cut alcohol completely and 1 caffeine a day so that sleep is not impacted which it started to once he started on the cocktail of medication. He also fast 8pm till 12pm. Ive been told that taking chemo while fasting actually helps the chemo targets more directly the tumour.

We are also crowdfunding for Optune TTF, a device that has proven results with GBM, there is info on the brain tumour charity.

We are early stages having had the 4.5cm tumour removed and just completed radiotherapy. Onto the 2nd round of chemo on Monday if his platelets have recovered enough.

Not sure if this is helpful. I take those timelines as an average and not all sizes fit all. You almost need to push it to the back and look forward, enjoy life. I had a friend who was recently knocked of his bike by a bus, lucky escape to only need his retina re-attached could have been “terminal”. Stay strong, keep hope x

[AvocadoForever in reply to Dex2010]

Thank you for replying, Dex2010. And so sorry to hear about your husband. It must have been even more of a shock at the age of 47, I can't even imagine that. I like your approach to this, and I wish you and your husband the best of luck in fighting this disease. You are right, it is an average, and maybe I should remind myself of that more often to retain some hope. And yes, people die tragically every day with no preparation at all, even very young people. Looking at it from a different perspective, having time to prepare for it and enjoy the last years or months to the full might be seen as a blessing... Thank you.

[Tansi75]

Hi AvocadoForever,

My answer to your question is 'hope' and thanks for the mention.

When my oncologist asked if we wanted to know what my prognosis was we both said 'no'. As my elder brother David's was 12 months, we knew the outlook was not a good one.

Ignorance is bliss, it means you can concentrate on living and not dyeing, which is why I believe that we need a paradigm shift in Health Care Professional's belief in the outcome for grade 4 cancer and why they need to stop using the word 'terminal'. All life is terminal from the moment it is created.

If your mum and dad decide they do want to know the prognosis, they should also know that a grade 4 diagnosis can mean 'change of life, not end of life'.

Don't forget there is nothing wrong in asking for a second opinion, if you think it would help. Most importantly follow your instincts regarding what is best for them and you and always believe that it is possible for a positive outcome.

I hope this helps and if you have any questions, please do ask away.

Kind regards,

Tansi 🙂

[AvocadoForever in reply to Tansi75]

Hi Tansi75, thank you for your supportive words. I have an additional question about that sentence All life is terminal from the moment it is created. Just to check that I understand correctly the depth of this sentence, which I saw in several of your posts: does that mean that the person diagnosed with GBM should not see themselves as the unlucky one who is dying while the rest are living on? Should that be some consollation to them that others will die too? Or does it mean that you would die anyway, sooner or later, so don't worry too much if it is sooner than you expected? I don't quite see the consoling nature of that sentence, to be honest. I guess that whoever is diagnosed with something like this before the age of 70 or 75, must be shocked, as well as their relatives. So how exactly does this sentence help in the suffering? Thank you.

[Tansi75 in reply to AvocadoForever]

For me it means that the person diagnosed should not see themselves as being limited by the use of the word 'terminal' e.g your life is now terminal because of your cancer diagnosis. When from the moment we are born our lives can be terminated by events outside of our control as in the recent events in Southport involving 3 young children.

After my diagnosis and during treatment, I could have been killed on numerous occasions if my wife had not stopped me from stepping out into on coming traffic.

Too many people give up when they hear the word 'terminal'; in order to survive any traumatic event, you have to have hope, which is being taken away from people by using the word 'terminal'.

I believe the reason I am alive today is because, when I was told I had my grade 4 GBM, I have never had any intention of dyeing and continued with getting on with living my life in the best possible way I can. By my Oncologist using the words grade 4 GBM, rather than 'terminal cancer', which were the words used when my brother David had his diagnosis. She empowered me to believe that 'I can get through this', it is one more of life's hurdles to be overcome.

Recently as a result of being interviewed for a video on 'empowerment' for this years Greater Manchester Cancer Conference, I have done some more reflecting on 'empowerment' and concluded that my 'empowerment' began on the day I came ill due my first GBM. Subconsciously, after being admitted into hospital I decided that:

It's my body,

It's my illness,

It's my life,

I'm in control

Which then enabled myself and my wife to talk openly about our future together and making plans for the future during the week prior to my operation. All the above stems from the suffering we went through during David's terminal diagnosis, which could have been so much different if the words 'grade 4 GBM' had been used.

So the suffering can be avoided by a positive mind set, which is why I consider my diagnosis as being an opportunity rather than a death sentence, based on expected outcomes by Health Care Professionals.

Does this make sense and help to answer your question?

Wishing you all the very best for a positive outcome and future together 🙂

[AvocadoForever in reply to Tansi75]

Yes, it makes perfect sense. Thank you, Tansi, you have helped m with my dilemma about tomorrow's first consultation of my mom with an oncologist. You are giving hope to many of us in this community. Thank you for putting the time into your thoughtful replies.

[Gdad62 in reply to Tansi75]

Hi Tansi75, I've just joined this group and have found your posts interesting and informative. My wife was recently diagnosed with hi grade GBM and begins chemoradiotherapy in a few days time, having recovered well from the de-bulking surgery. I found it interesting that your medical team use the term 'terminal'. At no point have my wife's team used that term. Instead, they use 'incurable' which I think avoids the mindset of an inevitable outcome and instead describes a medical fact. It also made talking with family and friends much easier. All the very best.

[AvocadoForever in reply to Gdad62]

Hi Gdad62, I personally find the two terms almost identical, when it comes to the message they carry. The doctors in Slovakia have not yet used any such term with my mom, the patient, so far everyone has talked of "bad news" and a "hard tumor to fight". This might change yet, we are still in the process of addressing this diagnosis with doctors.

[Tansi75 in reply to Gdad62]

Hi Gdad62,

It wasn't my Oncologist who used the word 'terminal' it was my elder brother David's. My Oncologist used 'grade 4 GBM' then asked if we wanted to know what the prognosis was, when we said "no" she accepted it and we then talked about having a future together ahead of us. Her approach has always been an 'holistic' one and she is just as concerned about my wife's well being as she is about mine.

It's good that your wife's medical team are using different terminology, which does make a big difference to enable you to have a more positive response to the news.

I was drinking ozonated water when having my chemoradiotherapy and drank a pint of ozonated water when taking my chemo tablets. Whilst going through treatment your wife should listen to her body and rest/sleep when it tells her to.

Wishing you both and family a successful response to treatment and having a longer and better life together.

Kind regards,

Tansi 🙂

[Gdad62 in reply to Tansi75]

Thank you, Tansi 👍

[Snettisham]

Hi

I am really sorry to hear everything that you are going through, my husband died aged 63 recently and lasted less that 8 months from becoming ill, same illness but no operation. At no point did he or I ask for a prognosis, he accepted all the treatment he was able to have and we carried on, very difficult as lots of uncertainties but that would be the case anyway.

I am glad we didn’t know. I’m not sure how it would have helped? I guess I’m really trying to point out do you need to know?

All the very best and fingers crossed for you and your family.

[AvocadoForever in reply to Snettisham]

Hi Snettisham, very sorry to hear about your loss What some people tell me is that the time between the point you know you are going to die and death can be a very special time when you make your amends, spend time with your closest people, say what was left unsaid, and prepare for a peaceful departure. But I suppose all this happens even when you don't know the prognosis, but know you are fighting a very difficult disease. My question to you is: Wasn't it more of a shock when the situation started to worsen just a few months later? Wasn't it like you were diagnosed all over with a terrible disease? Couldn't it have been easier if you had had more time to prepare for the fact that it would just be months?

[Snettisham]

Hi difficult to say really, they can’t really say anyway, everyone has different symptoms, it was all an awful roller coaster and very traumatic for us both. We were told it could be treated but not cured, so we knew really. We didn’t discuss it much, we had been very lucky really in our marriage. Just very very sad. We are all different and we should do what is right for us. It surprises me when I look at recent photos how many happy times we had still with grandchildren etc. The one thing I would say is to make sure somehow you look after yourself and your young baby. Your parents would want you to x