Newly Diagnosed

[Finulla]

Hello Everyone, I have Glioblastoma & was diagnosed in Oct 2020. I have had one lot of treatment & now on more in London. I am really positive and hope to last another 4yrs , I'll be 54 when 4 yrs pass.😁

[Tansi75]

I was 50 when I was diagnosed with my grade IV in 2010, so it is possible to live beyond 4 years. Staying positive is very important, but also healthy eating, moderate exercise and using what I call alternative anti-cancer treatments. Some foods which have anti-cancer properties are blueberries, pecan nuts and turmeric spice. I add the blueberries and pecan nuts/mixed nuts to my breakfast cereal. I have also been taking Higher Natures Immune+ tablets - to boost my immune system and their Complete Omega tablets, which are good for the brain since 2010. Stay positive and take one day at a time, always with an eye to the future.

[Finulla in reply to Tansi75]

That's so funny, I have blueberries sunflower seeds natural yoghurt with my oats in the morning and all my yrs have eaten a salad with either fish, eggs, Vege burger in the evening. What brand are your vitamins? You are Amazing 😀 and really positive. Thank You So Much. ( I'm really tired and going for a nap )

[Tansi75 in reply to Finulla]

It's good that you are going for a nap when you are really tired. I read an article in my newspaper last year, which stated that new research had shown that cat napping of, I think it was about 20 mins - 2hours, is good for the brain. At this moment in time of your treatment you need to allow your body and brain time to recover from the surgery and treatment. But it is also important to keep on exercising the brain. I have been doing this since 2010 by reading, crossword puzzle's and rediscovering the joy of Jigsaws. Believe in your bodies ability to recover and your brain's ability to re-wire itself, to compensate for the removal of the tumour and any other part of the brain that was removed. My tumour was in the right temporal lobe, which was also removed in order to get to the tumour. Part of the journey you have now commenced will be learning to adjust and make changes to how you do things as necessary. Each one of us is different so the effects the tumour, treatment, etc will have, will also be different. But I really do believe that being positive about life is key to living beyond a prognosis. Stay safe, well and be positive.😊

[Curious12 in reply to Tansi75]

I'm a "Johnny come lately" to this nasty business. Was diagnosed in April 2021. I'm having a hell of a time coming to grips with the fact that I'm in this pig of a situation. My life got turned upside down by the diagnosis. I collapsed in the bathroom in late March. Was rescued by the police and rushed to hospital where a scan revealed a big tumor which was removed via surgery shortly fterwards. I have no recollection of the collapse. From my perspective, I went from being afit strong healthy 46 year old man to being a weak, not so strong terminally ill patient who could barely walk thanks to the surgery. For the past 8 years, I'd been seeing a Personal Trainer. All the muscle mass that I'd built up from this training was lost after 3 weeks in hospital.I lost 18kg of muscle lying on my back!!

I spent a further week in a Rehabilitation Center which was more akin to hell. I was located in the"'brain injury" unit and so was stuck among a stack of stroke victims (i.e mostly 80 year old men). Had to sleep in a ward of 15 others who all watched TV into the night. They also all snored and had sleep apnea. Needless to say, I didn't get allot of sleep!!

I I discharged myself after a week and went back home. I intensely dislike being treated like an old man and being patronised by the staff.

Since I've been home, everyday is colored by the fact that I have a terminal illness which may see me in an early grave in 2 years from now. My driver's license has been suspended on medical grounds though they won't give any details. I look on at others and think "you're lucky". I've resumed going to the gym. In terms of physical fitness, I'm only a fraction of the man I used to be. A half hour gym session leaves me feeling tired for 2 days afterwards. The tiredness then makes me depressed. I ran out of sick leave and annual leave whilst in hospital so I'm now on unpaid leave and using my savings to live. I'm hoping I'll be able to have a cranioplasty done before the end of this month which will put my head back together again. I'm also oping to return back to work in mid-September. In essence, I want my old life back!! Just finished radiotherapy on 28/6/3021.

Any tips on how to cope with this purgatory?

[Tansi75 in reply to Curious12]

Hi Curious12,The first step is to recognise that your life has changed and there is no way of getting your old life back. I know that is a natural response to aim to do that, but the sooner you come to terms with the fact that you can't turn the clock back, the better.

I found it important to recognise that the diagnosis gave me an opportunity to reflect on my life, I was at a cross roads with a new opportunity to take my life forward in a new direction. If you can accept this, it provides you with a more positive outlook and you can take your time to think about what you want to achieve as you go forward in life.

Stop going to the gym, now is not the time for it, at the moment you don't know what you could be pumping around your body, which could lead to a regrowth or a new one somewhere else. Now is the time to rest and allow your body and brain the time they need to recover from the surgery, illness and treatment. I believe too many people have tried to rush recovery and get back to where they were before their illness - that is the wrong path to follow and it doesn't lead to a positive outcome, more likely a self-fulfilling prophesy of an early death.

Use your time wisely to reflect, etc; you are not in a race to recovery.

Regarding a return to work, are you sure that is the right thing to do? Have you applied for PiP or any other benefits you could be entitled to? The Brain Tumour Charity has a relevant section on their website and you could ask them for advice.

Regarding your physical fitness that should be done in stages and I would recommend leaving it for at least 12 months - I think you should give this some serious consideration at the moment.

What is your priority, being fit and not living long or living as long as possible in a healthy and possibly different way?

Do you have any family or friends you can discus this with? I found it useful to listen to different points of view, even from my local bank staff when discussing our finances, which helped to decide to take ill-health retirement - I appreciate you are younger and might not want to do this.

Another thing to consider is your diet, if you are going to the gym, what are you eating and drinking? If it is high energy food/drink with a high sugar content, that is the worst thing you can do. Sugar feeds cancer cells, whilst oxygen kills them. This is why I cut down on my sugar and alcohol intake and feel a lot better for it. A treat once in a while is good and I enjoy it more.

I also drink ozonated water, which has extra oxygen in it and do that using a Sota Water ozonator. I also include drops of 3% Food Grade Hydrogen Peroxide (FGHP) 3 times a day in 1/2 pint. Google 'The Truth About FGHP' which is an American document, which is the one I used to make my decision to use it in 2010.

I hope this helps, if you have any questions, just send a post.

Be positive and stay safe.

[Curious12 in reply to Tansi75]

Hi, thanks for your reply. When I referred to my old life, I really meant getting back to work, getting my driver's license back. Not being able to drive a car is a serious nuisance - both of these things I hope will happen by September. My principal point of interest was how get on walking around with this dark cloud over your head each day?

From my own research, GBM spreads by direct extension and infiltration .into adjacent brain tissue. I've found no evidence to say that GBM spreads in the blood like, for example, melanoma and other cancers.On this basis, I see no benefit in stopping the gym. There is evidence to show that exercise is beneficial to GBM survivors.

[Tansi75]

Regarding the question about chemo. There is some information about the best time to take it on the Brain Tumour Charity website. However, I took my morning tablet one hour before breakfast, drank 1 pint of Ozonated water, which is water with extra oxygen in it. I use a Sota portable Ozonator for this. This worked for me and I never suffered from any sickness when I was taking Chemo in 2010 or 2015/16 for the clinical trial of SATIVEX, which meant that I was taking Chemo for 21 days in every 28 for 12 months.

[Curious12 in reply to Tansi75]

I was told in the hospital to take it 1.5 hours before radio therapy on an empty stomach.

[Who-said-that]

Hi Finulla sounds like you have the perfect attitude to get through this! I have made it to 5 1/2 years if I get to August will be 6 yrs. I’m about to take my 2nd cycle of lomustine chemo as I’ve got tumour progression and although I’ve had sad tough days that I’ve let out as I think it’s important not to bottle things up I’ve been positive most of the time. I see there are silver linings in a lot of the situations I’ve met some great people and have had support through counselling and therapy which has helped my mental health. I laugh as much as I can and make fun of my illness to take away the seriousness of it all. My way of dealing with it my friends join in and I really appreciate that I’m not surrounded by people weeping and telling me I’m so brave because I’m not!

[Finulla in reply to Who-said-that]

Hello there Who-said-that,. Wow you have done really well and you are very positive. Can I ask what kind of tumour do you have? I think your normal to realise that you have a serious health issue and suffer low periods but overall your lively the majority of the time. You are brave 😃.

[Who-said-that in reply to Finulla]

It’s a glioblastoma grade4

[Starcatcher1 in reply to Who-said-that]

6 years with a GBM is really good. Obviously you will want it to continue, but we’ll done. 💪👍I’m at just over 3 1/2 years myself. 4 years since my first craniotomy at the end of November, hoping I get there.

[Sandylil in reply to Starcatcher1]

Can I ask you how old you are?

[Curious12]

Everyone talks about staying positive. How do you do that when you're living alone and relatively new to this business ( only diagnosed i n April 2021)? I used to go to the gym 4 days a week prior to diagnosis. I've resumed going to the gym however have found that if I spend too long exercising, I feel down the next day- usually the entire day.For example, last week I did a 3km row in the gym- about 10 minutes of good cardio exercise. The next day I was really down all day. I've read that those who exercise with GBM tend to tilt the odds of survival in their favor. Everywhere I look at home,I see things thatI did or purchased during what I term my infinite life. That is, the part of my life where I thought I'd live forever (as most people assumewhen they're young) and didn't have the dark cloud of GBM hanging over my head. I sort of become wistful for those days to return. My situation is worsened by the auhorities taking away my driver's license because a doctor decided I was medically unfit to drive without having done any testing to prove it. Normally, if I'm feeling down like this, I'd hop into the car and go for a drive in the countryside to just get away from the house and all those memories. I tried going for an extended walk on a few occasions however this makes the problem worse since I end up feeling very tired the next day and, consequently, feeling very down too. Apologies for the whinge. Any tips would be gratefully appreciated.

[Tansi75 in reply to Curious12]

Regarding your driving licence, my understanding is that it is standard practice for anyone diagnosed with a Grade 4 glio to have it revoked for 3 years. This happened to me and I re-applied for a new licence, no problem.With regards to staying positive, it is important to accept that your life has changed and that also means having to adapt to how you now live. If you are feeling depressed after doing certain things, my advice is to stop doing those things that cause you to feel that way.

Look for new ways of keeping fit but do it in stages, you do need to allow your body and brain to recover from the operation, treatment, etc., and that does take time.

Based on my experience, I recommend spending the first year reflecting on your life, resting and allowing your body to recover.

Whilst you are unable to drive, look at other ways of travelling. I live south of Preston and attend the Christie Hospital in Manchester. We used to drive for my appointments, but then decided to travel by train, it was far less stressful. It might take longer, but it provided a break from the additional stress of driving. Consider having day trips out by train, bus, coach etc.

The other things we did during my first year during treatment and reviews, was to turn the regular trips to Christies into a mini-break. We would stay in our favourite hotel, go shopping or to a concert if a band was on we liked.

Being positive, is a state of mind, which also requires training and practice. It might be worthwhile exercising the brain for a while whilst you wait before exercising the body.

I have said this before, you need to decide what is important to you:-

i. physical exercise to get back to the fitness level you previously had, which you might think will make you feel good, but at the moment is having the opposite effect. But the consequence could be living for fewer years.

or

ii. Having a longer life, with a reduced level of fitness, whilst doing it in a different way. Using your time to expand your horizons and do new things, explore new options, make new friends, etc.

My final point is the need to be willing to adapt and do things, including fitness, in a different way, if you want to live beyond your prognosis. The choice is yours to make, it's your life, but please do choose wisely.

My own belief through my experience, is that moderate exercise is best. I used to enjoy running, hiking, playing five-a-side football once a week. But I had to accept that those days are over. Due to the consequences of having 2 tumours removed, there is no way I can do those things any more. So I have adapted and keep fit in different ways. My wife bought me a Fitbit wrist band for my birthday in July and using it has proved that I am still walking a considerable distance every day whilst walking around our house, gardening, etc. It has helped me to be more relaxed about my perception that I wasn't maintaining a good level of fitness.

Good luck and I hope you can turn things around to become more positive.

[Analternativelife]

Hey finulla

Just diagnosed likely grade 4, surgery 10 days ago, results day today! And treatment plan 😳

Hoping to do as well as you!!!

Fingers crossed 🤞 😁 and positive mental attitude intact

Best wishes

Leion