I was working on a ship offshore Norway. Blinding headache and was eventually taken to hospital in Bergen. Subsequent CT scan showed a large cystic lesion in the right frontal lobe. Surgery was performed with resection and drainage of the cyst. Pathology came back saying it was primary brain cancer, what they call a Gilmoblastoma. They are still working on the histology. I am absolutely sick with worry. Can’t see any positives at the moment. It doesn’t help when I’m between the Norway health system and the Uk. Only just sent my medical report to the GP today.
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Longislandicetea
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Hi LongislandiceteaI was diagnosed with a grade 4 glioblastoma in the right temporal lobe in May 2010, I appreciate that you are worried, which is natural. However the best thing you can do at the moment is take one day at a time, be positive that you have had a diagnosis and action is being taken.
At the moment it is also important that you keep your brain working, I did this through reading, crossword puzzles and listening to music and talk to family and friends who can support you.
No matter what the prognosis, you must believe that you can get through this. I chose not know the prognosis, which meant I and my wife could get on living our lives together for however long that would be. To date it is 11 years beyond my diagnosis.
Do not waste any time/effort in research into other people and what happened to them. Spend your time more usefully on deciding what you want to do with your life beyond your treatment. For me I saw my diagnosis as an opportunity, to reflect upon my life, consider I was at a new crossroads, and decide which direction I wanted it to take.
When I was told the type of tumour I had, after the 'oh S**t' moment, both I and my wife started to talk with my Oncologist of having a positive future together, which we finished with 'to infinity and beyond'. As I left the room, I was struck by the thought that I had to put the present situation into context with other difficult times I have weathered in the past. For me it using events in my RN naval career, nothing tragic, but times where I wondered if I could get through this and eventually did. So my thinking was 'if I got through that, I can get through this!'
So be positive no matter what.
There are some things you can do to fight back, such as change your diet - include blueberries, pecan nuts, turmeric (we put it in our rice dishes) which have anti-cancer properties.
Cut out extra sugar, including alcohol - I appreciate that for some people their response might be to 'hit it', but that is the wrong thing to do.
Include fresh fish, meat, fruit and veg, cut out fast foods and processed foods. There is guidance about diet on the Brain Tumour Charity website.
I would also recommend using food supplements to boost your immune system, especially when you go through chemo. I have used Higher Natures Immune+ tablets, which are designed to boost the immune system since May 2010 and their Complete Omega tablets which are good for the brain.
I also use what I call my 'alternative anti-cancer' treatment which includes:-
i. drinking Ozonated water, which is water with extra oxygen in it - oxygen kills cancer cells, where as sugar feeds them. I use a Sota Water Ozonator, which you can buy on-line, it is small and portable. This has enabled me to use it through out our travels around Europe and the UK. I recommend drinking a pint of ozonated water when you take chemo tablets. A pint of water will help the drug be absorbed into your body faster - it is what I did and had no problems with side effects.
ii. I also add drops of 3% Food Grade Hydrogen Peroxide (FGHP) to my ozonated water. Google 'The Truth About Food Garde Hydrogen Peroxide'. It is an American document, but the one I used to make my decision to use it, after it was recommended by a dear friend, who is an ex-chemist.
I hope this helps, if you have any questions about anything, just send me a post.
Wow. Thank you so much for the reply and info. It really has made me feel better and has given me food for thought. I think once I get to talk to an actual dr here in the Uk and can see things moving forward I can get a handle on the situation. In the mean time I will take your advice. The alcohol bit about hitting it is so true ! Temporarily feels good and life is normal but then you wake up the next day. Thanks again for the supportive mail
Regarding waking up the next day, can I recommend you listen to Travis Tritt's song 'It's a great day to be alive'. It has meant so much to me since 2010.🎶
I will have a listen for sure. Made it back to the UK on Wednesday but been in isolation since which sucks. Thanks again. Today has been a good day so far
Glad to hear that you are back in the UK. Whilst you are in isolation use the time to reflect on your life and what you would like to do. You are on a new journey, which can go in any direction you want. But, in the first year it is important to rest and allow your brain and body to recover. Do not be tempted to start trying to do too many things in a short time period. Whilst exercise is important, gentle exercise is best, take things one day at a time and one step at a time. I found it useful to ignore the prognosis, and concentrate on living the life we wanted to live. This did mean taking the first year easy, with some breaks away from home when we were able to. I didn't start any exercising until after the first 12 months.
Thanks again Tansi75. That is exactly what I’m doing although I’m trying to exercise a little more than you suggest. Just morning stair climbs. I was lucky in a way that I feel I have recovered relatively quickly from the op and don’t feel any ill effects of some gentle exercise. If I do then I will slow down a bit. One thing I meant to ask you did you ever research homeopathy remedies to work alongside the treatment. I’ve had a look and something called Ruta Graveolens keeps popping up. Ever heard of it ? I am currently taking immune boosting supplements and Omega 3 although I always take Omega 3 and and it never stopped this thing growing in the first place !
It is good that you recovered quickly from the op, which was the same for me. Morning stair climbs are a good way of starting, which is what I did with some press ups, but rest when your body tells you to.I have used Higher Natures Immune+ tablets since coming out of hospital in May 2010. They are designed to boost the immune system and I do recommend them as they have worked for me. I also use the Complete Omega 3:6:7:9, which are good for the brain.
My wife did get some green tea for me when I came out, but found it too bitter a drink, though it does have anti-cancer properties.
Regarding the growth of the tumour there were probably other factors involved in its development, such as high sugar intake and maybe the types of food you were eating.
I don't know anything about how a tumour starts, but my elder brother who was a NAAFI Manager with the RN for over 30 years, developed his tumour a year before mine. Unfortunately he died 4 months before I became ill. When I have asked about if there could be any relationship with serving in the armed forces and brain tumours. There is very little evidence about it.
The main thing now is to stop any regrowth, I had 4 years before a second one developed, which was removed in Feb 2015. Everything has been clear since then, which might be down to the Sativex trial I participated in 2015-16. Sativex was used for tumour regrowths and the Brain Tumour Charity is due to start a funding campaign to undertake more research into the use of Sativex.
One thing I did find useful, was to visualise the destroying of a tumour after treatment and for several years afterwards, also when the second one decided to put in an appearance. As an ex RN Gunner I would visualise destroying it with the 4.5" gun or a Seacat missile. Shows how long ago my service was.
I do think that mind over matter does help in fighting back.
Have you thought about using the ozonated water and 3% Food Grade Hydrogen Peroxide?
Funny you should say that about the Forces. I served in the RAF for 12 years as an avionics technician, although I did come out 25 years ago. Yes I have started on ozonated water. If nothing else it does make the water taste better. Not tried the 3% food grade hydrogen Peroxide yet. How many drops would you suggest.Once again thanks for the advice. I will take anything at the moment. I have changed my diet. Trying as best as I can to eat healthy and cut out the alcohol which has been the hardest part to take, but I guess the odd glass of wine now and again can’t do any harm
Nothing wrong with the occasional treat of a glass of wine or beer.With the 3% FGHP, I started by taking one drop, 3 times a day, then built it up by an extra drop the following days, until I reached 5 drops. There was no logic in this decision, it just felt the right dose to take. I increased this to 6 drops last year as a result of COVID, but have reduced it down to 5 drops now.
I use an eye drop bottle to dispense the drops into a half pint of ozonated water, which I take in the morning before breakfast, then lunch and tea. About one hour before I am due to eat, I am flexible with this, especially when travelling, on holiday, having a break on a day trip.
I have 2 small glass bottles, old mineral water ones, which I use when travelling/days out, so I can still take the ozonated water and drops when required, before eating a meal. I ozonate the water in the bottles first, then add the drops and give the bottle a shake to mix it up.
You can buy the 3% FGHP from Bobby's Health Shop on-line; it is the general purpose one. I normally order a couple of bottles to have in stock in the garage. Keeping the open one in the fridge with the eye drop bottle.
The only side effect is that you will be be 'easing springs' on a regular basis, so when ever we are out and about or going for hospital appointments, I am constantly on the lookout for toilets.
However, it is a small price to pay, as I do believe the 3% FGHP has helped me beat the odds regarding my prognosis.
Regarding your diet, are you including blueberries, pecan nuts and turmeric, which have anti-cancer properties? We buy frozen blueberries, which come in 2kg bags from British Frozen Fruits on-line. They are excellent and are fresher than the ones in the shops, plus are from the UK.
One thing I found useful to help me keep my brain working, whilst recovering was doing jigsaws, which I loved as a kid. It help me to relax and redevelop my spatial skills. You might find over time that depending upon the location of your tumour and the effects it has had on how your brain works. You may need to adapt and do things differently than before; remember each one of us is different and the effects of the tumour, operation and treatment will be different.
We have many chipped plates, dishes, broken pots, etc., due to my lack of concentration at times and loss of spatial skills. But we did ask for help and I was linked to a support worker at the Christie Hospital in Manchester, who helped me to improve these skills with various exercises. I think it is important to accept any changes that do occur as a new learning opportunity to relearn how to do things in a different way. This approach has helped me to not become angry or frustrated. A little p****d off at times, but as with the services, adapt and survive.
Hope all is well with you, stay positive, safe and well.
Once again I think you for your advice. I will certainly take it onboard. I’m lucky in a way at the moment as I have no ill effects from the surgery to date. Both my body and brain seem to be working fine as before I started showing symptoms. Then the first to go was my memory where I started to forget things easily and got confused at times and my wife noticed I had become less tolerant and easily angered, then this progressed to headaches and weakness down my left side. First noticed that when I couldnt use the deodorant spray under my right arm. Yes I have started to include brain friendly food such as blueberries. Lucky at the moment as they are fresh but will look into stocking the freezer up. I started on the hydrogen peroxide today so will see how I tolerate that. Like the term easing springs .
Got my first appointment with the oncologist on the 20th so I guess I will find out more on future treatment. I’m still waiting on the full histology report from Norway which seems to be taken an age. All I know at the moment is the initial pathology which was gilmoblastoma but I’m preparing for the worst case in my head. Just my way of dealing with it.
You have been a great help and I thank you. My mental state has certainly improved since you made contact
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