Hi there my husband who is 56 was diagnosed in Feb with a grade 4 glioblastoma tumour (and it is also the small cell one which apparently is very rare) has now had a cranetomy and 6 weeks of radiotherapy and chemotherapy - he now feels awful and is struggling as we all are - any help gratefully received.
I had hoped we would be able to meet others who have gone or are going through this but when i contacted the local cancer group they have groups for lots of cancers but not brain ☹️
Hi,I had a left side tumour removed from my head in March 2022, also grade 4 glioblastoma . I am happy to talk or catch up together, if we are close enough; even online if you wish, just to help if I can. I am only now starting to feel closer to normal ( but not fully there yet).
Thank you for your reply have you also had chemo and radiotherapy?Cheers sarah
Yes, at Mount Vernon
Hi, I had a grade 4 glioblastoma removed in May 2010, which was small, and there are things you and your husband can do to fight this.Regarding the radiotherapy and chemotherapy it is important that he takes the time to rest and recover from the surgery and treatment. He should also sleep when his body tells him to do so.
You must take each day and step, one at a time, what you are now going through is a journey, which can have a positive outcome and life beyond the prognosis.
I found it useful to reflect whilst recovering and see the situation as an life changing opportunity, I was 51 at the time. You are at a crossroads in life and can go in any direction you choose, just take you time and believe that you can both get through this together. Staying positive is important, as is laughter, which is a great healer.
Do not waste time using the internet to look up what has happened to other people, concentrate on your lives and living in the 'here and now'.
Some steps you can take to fight this disease are:-
i. Change of diet, cut out any unnecessary sugar, which feeds cancer cells, include blueberries, pecan nuts and turmeric spice, which have anti cancer properties. I buy my blueberries from British Frozen Fruits which come in 2kg bags.
ii. Drink ozonated water, which has extra oxygen in it - oxygen kills cancer cells. I have been drinking it since May 2010, also when I was taking my chemo tablets. I use a Sota water ozonator, which is available to buy on-line - there are cheaper versions, but the Sota comes in a travelling case and is portable. I always take it with me when on holidays, etc.
iii. Goggle 'The Truth About Food Grade Hydrogen Peroxide', which is an American document; the one I used to make my decision to use it. I have been adding 5 drops of 3% Food Grade Hydrogen Peroxide (multi-purpose) into a 1/2 pint of ozonated water since 2010, which I take 3 times a day. I buy my supply from Bobby's Healthy Shop (South West UK) on-line.
iv. Use food supplements to boost his immune system. I have been using Higher Natures ImmunePlus tablets since 2010, which are designed for this and their Complete Omega tablets which are good for the brain. These can be bought on-line and the company is a UK one.
From my experience I also believe it is important to keep the brain working, so before, after surgery, during and after treatment I read, listened to music, did crossword puzzles, played the preloaded game on my mobile phone. I also used jigsaws to help with my spatial skills.
Regarding support have you tried the Brain Tumour Charity's website? It has a wealth of information. It also has a Brian app, which can be used by your husband to keep track of his progress, treatments, challenges, etc. It is an excellent tool and also enables you to reach out to other people as with this website. I use Brian on a daily basis, I mainly access it through my computer, but most people use their mobile phones.
I hope this helps, if you have any questions, please do ask them and I will reply.
Most of all stay positive and believe that you can both have a bright future ahead of you together. I know it can be difficult at times, but be positive and discuss things, always with one eye to the future.
🙂
Hi there thank you for your very detailed reply - when I suggested the diet to the oncology doctor and nurse they just said let Graham have what he wants so he's been doing just that cake chocolate coke nuts crisps alcohol as their opinion is he's been dealt a really bad brain tumour - his one was 3" in diameter so a large amount of his brain was removed and as it's the small cell one which is rare and the medics are not even sure if radiotherapy and chemotherapy will do anything.So we are between a rock and a hard place.☹️
Ok, but I still suggest cutting down on sugar, alcohol and maintaining a healthy diet, based on my experience over the past 12 years.Have you asked if there are any clinical trials, which might be suitable for him? If not, there is a section on the Brain Tumour Charity website about clinical trials, so you could have a look at that.
I appreciate that at the moment you feel between a rock and a hard place, but what ever you do, you must not give up hope. We never know what could be just around a corner or over the horizon.
Stay positive and believe that you can both get through this.
I wish you both and your family the very best and to use a quote from Oddball in Kelly's Hero's 'positive waves'.
🙂
Thank you 👍
Hi Tansi, I consider myself well. Having two more weeks of radiation, the a month if also having chemo. Changed my diet prebiotic yoghurt blue berries and kale. Had green beans and salmon. I try and make veg soups with squashes carrots onions and coriander. No tea or coffee. Drink loads of water now. Also when children have a dance I also try a little dance.
Hi Denni60
Glad to hear you are well, keep up with the positive thinking and change of diet. I still drink tea, with no milk and coffee with milk. Are you drinking ozonated water? I was never keen on dancing, much preferring head banging instead, but its good you are able to have a little dance with your children; hopefully a lot more now Christmas is coming cue a certain Slade song and others from the 1970's.
Stay safe, well, warm, positive and have an extra special Christmas and New Year.
So sorry to hear about your husband. My husband, 67 years old, was diagnosed in December 2021 with gb4. Part of the tumour was removed and he had 6 weeks of chemo and radiotherapy followed by chemo cycles of 5 days on and 23 days off, he is now in cycle 3. I have shared with him advice I have read on this group and particularly, Tansi's sage advice especially about being at a cross roads. He has embraced this and set up a charitable initiative to raise funds for 2 charities including the oncology department where he is being treated (raised in excess of £40k so far). He has changed his diet, again, following Tansi's advice (for which we are very grateful)and reduced sugar and included blueberries, pecans and tumeric. All this has enabled him to remain positive, well and living life to the full (we've recently had a family holiday overseas). Obviously there are days when he feels nauseous and exhausted from the chemo but we plan for those and 'lock down'. The worst time for us was in December when we had the diagnosis, we were traumatised through out Christmas. Now because of my husband's positivity, we look to the future. I am sending lots of positive thoughts to you all.
Thank you for your reply - where was your husband's tumour? Graham's was in the right tempural lobe l I think our issue is that it is the small cell one which is rare and even nastier - it basically will ignore the radiotherapy and chemotherapy and keeps growing. Was your husband on steroids ? As these have helped to put on weight and given Graham a pot belly all if this doesn't leave him feeling very positive 🤔
Hi there, left temporal lobe.
Yes to steroids; after the biopsy in January, there was significant swelling and his speech and memory were impaired. At the time we didn't realise it was the swelling and it was very frightening for the family to hear him speaking nonsense for several days.
He was prescribed steroids and was permanently hungry, which, as you say results in weight gain. For us the worst thing about steroids was the sleep disturbance, my husband has never been a great sleeper but he's was wired on steroids and didn't sleep at all which was unhelpful. He's now off steroids.
I can see why you are struggling given the harsh diagnosis but hope is so important for both of you, try and look after yourself.
It's heart breaking seeing your soulmate face an incurable illness and it takes its toll because you try to keep everything positive for your loved ones whilst battling horror and grief internally. It’s impossible to give voice to this to people who haven’t been through it because they can’t possibly understand.
Please reach out if I can help in any way
Thank you for understanding the harshness of our situation it's just so hard when everyone is saying make memories and these are now with not the same person 😏
My tumour was in the right temporal lobe which was removed in order to get to the tumour. I also put on weight and developed a belly whilst on steroids, but over time and with gentle exercise it is possible to lose the weight and the belly. I do recommend resting and allowing Graham's body and brain to recover during the first 12 months.
I was always fit before my tumour, running, playing 5-a-side football every Monday and hiking (which I love) but part of the journey is having to make adjustments to how you used to live beforehand and do things differently e.g. different types of exercise.
I can't do any of the former any more, but go for walks when we can (local). My wife bought me a Fitbit band last year, I'm not into such things, but it has proved to be really useful. It shows that I am getting far more exercise walking around the house and gardening, than I thought I was, which is reassuring for me.
I can't tell you what type of cancer cells my tumour was made up of, as in 2010 that facility wasn't available, but I do know it was a small one.
The other thing we used to do, was turn our hospital visits for treatment, review, etc into mini-breaks and stay at our favourit hotel in Manchester - my treatment and oncologist were/are based at the Christie Hospital. This enabled us to spend time relaxing instead of travelling to and from hospital in one day; we live south of Preston.
We would also combine such stays with going to a concert such as seeing Willie Nelson when the dates coincided. It help's you to live as normal a life as possible and brings enjoyment to an otherwise, stressful event. My wife was always stressed about the results of scans and reviews, etc. These occasions proved to be special moments together for the two of us.
Stay positive, never give up hope or believing that you can have a great future ahead of you both together, for as long as that may be. Also, do not forget to take care of yourself, your health is just as important as Graham's.
We have been very lucky as my Oncologist has an 'holistic' approach and her concern is both our wellbeing, not just mine.
Keeping moving forward one step at a time and one day at a time.
Stay safe and well.
🙂
Hi Tango, just been reading your post. How are you both getting on? Hope things are going well. Positive thoughts x
Hi there thank you for your reply and my husband is now in month 12 and fingers crossed is doing really well in fact he's off to Portugal on a golf weekend next Friday which considering last August he had given up it's amazing. We've had a lot of support from friends family and his workplace which has really helped.We are also using care oncology and he's been put on some different drugs which who knows may have helped - he did not have the further 6 months of chemo and in fact has had no further treatment from the NHS since 25 may.
We know it will come back but we are taking every day as a bonus I hope you're doing ok.
Regards Sarah
That's amazing news Sarah! Really encouraging to read! My husband had only one round of chemo, it really didn't agree with him and destroyed his platelets and white blood cells. Do you mind sharing which drugs they've put your husband on? It's really scary when they decide they're doing no further treatment.
Great to hear you're having good support and amazing that he's away on holiday! I can't wait to get to that point! Has he bothered with insurance, or did you find it too expensive?
Thank you for sharing your journey x
Dad diagnosed with GBM grade 4
Rachy
Posting this information in case it is useful for anyone else
Husband about to commence chemo/radio.
