A new Glioblastoma Grade 4 & and a Kidney tumour

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Afternoon, just registering today with my info re the Glio thing !

I'm 56 fit and never had any ill health, hospital attendance or medicine. 10 Weeks ago apparently I started to slightly delay in my answers to questions but was still able to speak, move etc just struggled to think of the odd word. I was CT and MRI scanned kept at hospital for 8 days because of a scanned brain tumour and kidney tumour problem and then was spoken to the head surgeon at Oxford Hospiital who stated my biggest issue was something called the brain tumour Glioblastoma - Level 4. If I'm honest it means absolutely nothing to me, because Ive not known any illness or anyone else who has had illness. I find i ask my wife to ask the questions, remember and help with the forward issues. Two weeks ago I agreed to have the brain surgery in Oxford and they have taken as much as the brain tumour out and ive been at home for the last 8 days. The surgeon has said taking radioology and kemology would be a good idea as it will hopefully extend my time as he thought if i didnt try then 3 months would be the length of time i woud still be here. Extending my time is my preference however i have been quite interested in the fact that a lot of people have said to me that 3 months may be better as i would have a better but shorter use of time,,, 

To be honest, my talk with majority of communications is good for 80%, my business is purely communicating with people so its not to bad, as I said I struggle with a few words sometimes that wont come out thats a little frustrating but thats largely the problem at the moment, That said I've been stopped from driving even though only word shortage has happened which I find a large ammount of frustration. I've been told possibility of people receiving sorts of stoppages hence not driving, does that happen? The steroid tablet has put a round face on me, large frontage to my stomach, blooming large urge to eat anything and fat puffy/water resistant LARGE feet which are a pain. Ive got muscle loss in 8 weeks which I find a bit weird, as I said I'm usually quite fit,, Ive got a slow up when it comes to walking, my heart is a making my breath a little 'used' walking average distance and using stairs etc which is a little worrying. The only other thing with me is my calf sizes have already shrunk muscle wise and my left calf is blooming sore even though I havent over exercised or knocked it,,,  

If any body has some wise words that would really help me as I dont really know whats going to happen with future problems TBH, I always think life will be better but Ive been told this particualar Glio isuue is purely down to a bit of unluckiness which i can understand and cope with as I've had a great 56 years - its just one of those things,,,,

Warm regards, Delmar789 

  • HI

    so sorry to hear you got this horrible diagnosis.

    My husband (aged 51) had the same diagnosis last Sept. He's a fitness freak/marathon runner and was told the same thing - it's just bad luck.

    Your stories sound similar. His tumour was found in the Broca's area of the brain that controls speech and language. Reading and understanding is his biggest problem. His short term memory is pretty poor but he's still physically fit and still with us.

    He too was advised that without treatment he would have about 3 months. He took the initial 6 weeks of radiotherapy/oral chemo and coped really well with it. He had no major side effects except fatigue which kicked in about 4 weeks into the treatment. He was offered a further course of double-strength chemo but he declined, opting for quality not quantity. 

    So far, he's still able to run, albeit shorter distances at a slower pace and is doing his best to try to do the things he enjoys.

    Not sure if this message has helped. It's a roller coaster ride and everyone's experience is different.

    love n hugs

    Wee Me  x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Delmar789,

    My husband, who is 69 and had never had a serious illness in his life,  was diagnosed with the same stage 4 glioblastoma a year ago. He has had more or less the same treatment as you and it is all a bit bewildering to say the least. 

    His main problem is lack of mobility, which was the first indication of something wrong. He is gradually now losing speech and memory, especially if he is tired. He too had a sore leg and it turned out to be cellulitis, so I really would get that checked out. The steroids are muscle wasting apparently, we didn't know this until about 6 months into treatment. Obviously he also can't get around too well so that adds to the muscle wastage.

    Yes we were told it was just down to luck when my husband was diagnosed, bad luck unfortunately. Also told it was rare, but obviously not rare enough!

    Having read Wee Me's post, I know everyone is different and responds differently to treatment, but try to stay positive and rest when you can. 

    Wishing you all good wishes,

    LLamalover xx

  • Great to hear your helping and he's pushing through, great to hear the first 3 months timimg 10 months ago - good for you both, have to say thats what my ambition is - The many things I dont know are people start to feel ill or just tired, although Iv enever been tire and if I ever have you just put up with it, I must confess I'm starting to go for a sleep for an hour which feels wrong but I've also been told its the best thing to do !! :) My reaction to the Streoids have been the weirdest thing with the round face extended stomach and two feet with lots of water storing down there so you cant really wear shoes which is a bit wrong and as soon as my round face improves LOL

    Many thanks once again for a little steering I was only thinking last week listening and speaking to similar people would be a good idea !

    Kind regards, Moi ! 

  • Many thanks for that !

    Again when you havent got a clue about something that really affects you but other people can give you an update on some info thats strarted to affect individuals it really does help and update individuals, so many, many thanks x 

    I was only thinking last week people often touch base when they have similaritys, unfortunately most people dont want our similarity but its good to touch base and try and assist in any way the people or any people who are similar !

    Kind regards, Moi x

  • Hello Delmar789,

    Your writing style is fantastic and you make me laugh.

    My wife was also seen by a surgeon from Oxford.  I suspect it may be the same one.  He was very good and was available at all times. I hope that’s a similarity you we’re looking for.  She also has GBM4, so strike two.

    Medical people use statistics that don’t take in the obvious.  3 months might be the average, but that figure includes much older people, which you are not :-)

    Steroids can make you look fat, but they also make you feel great.  Why stop a good thing?

    Please keep writing and give us all a reason to smile.

  • Hi WizenedSplash

    Ta :)

    Ive just started getting zapped on a daily basis on Tuesday which i try my best to get some snoring in on the 10/15 minutes of zapping and to be honest it hasnt (yet) started to affect me adverseley - have a nice chat to all the staff who are ever so helpful, I love the old guy that when you arrive he asks some bloody obvious questions, you say no I'm bullet proof he gives you a nice stick on cetificate and you can wonder around the hospital !

    The one im a bit worried and anybody know if I'm being to pesimistic is the Kemotherapy - medication started yesterday, ive been told it takes away any saviour from any bad health thats out and about that I usually fight off, you get it and it can affect you etc anybody know if we can survive the kemotherapy thing? Souund to me as it could be worse than anythng else,,, but Ive never had any blooming other health problems so god knows how i'd survive a bit of Flatulence or,,,

  • So, my wife started her ‘zapage’ mid April and completed her radiotherapy course at the end of June. In parallel they gave her chemo in, tablet form.  

    I have to say she bearly reacted to either, so I think you are going to do well too.  

    The only side effects are some tram lines through her scalp where the radiotherapy beam did it’s sweep, which was fine as she can cover it with her wonderfully long hair. I hope this won’t effect you either.

    My wife’s GBM4 has robbed her of the ability to write and read like the rest of us. Your prose makes me smile, considering what has happened to you.  You write like pro. Top man Grinning

    Please keep us informed of your progress.  My wife looks forward to your next update too.

  • Hi Delmar789

    Hope you are still making most of your radiotherapy sessions! The chemo affects different people in different ways, my husband was fine, no sickness, no loss of hair, (any hair loss was the part of his head where the radiotherapy entered and that grew back in a nice frizzy grey colour). 

    The chemo did cause him to have low platelets, so he didn't take the very last dose of it. He also had a DVT but that was caused by the lack of movement in his leg and water retention. His blood sugar was high, this was because of the steroids though. If its any consolation, I caught Covid - only very mildly - this was before vaccines, but he didn't, so he must have had some resistance to bugs etc. Hope its the same for you, just have to be extra careful I guess.

    Good luck with it all. Never lose your sense of humour!

    Love

    Llamalover xx

  • Really reassuring to hear your good lady is getting zapped like me now but its doing and seeing her right, with not to much extra issues - very re ssuring for us both -although I have heard sadly its not every bodies way Disappointed

    Ive found it quite difficut to let on to people that I have the 'lovely' issue we have which affects people in many ways, some in pain, some in inconvenience or some in immediate negative ways which is very difficult for all connected parties. I have a business partner which I've tried to act the same way in the last two months and he thinks Im fine but my memeory and ability to do things with people quickly has become a problem to be honest - ve just worked out people may be proud, ambitious, pushing asside any health problems etc but in reality other people dont end up knowing you have GBM level 4 and it affects you and alters your previous abilities.

    Ive also worked out the amount of time you answer your fine to all the health experts (as thats the urge you always get) they can skip your fat feet, sore leg etc etc so I'm beginning to think giving them a list although coukd feel your extending someone elses work lists / efforts etc it may well be worth it !

    Just chatting,,,, being a bloke whos's not bothered if my hair falls out whilst getting zapped - I was please but sad to see the great wig shop in Oxford hospital, it was lovely to see I just thought a little sadness that some ladies may feel so much more affected with hair loss and to be honest I feel for ladies given their thoughts there - I'm sure the right person with or without hair is loved and looked after by enough decent people to make them feel as good as they have ever been - just saying !!

    Have a great weekend PEOPLE xx

  • Thats grate to hear, really apreciate the info, puts a little more confience that the Chemo might not be the biggest issue and affects can be avoided and hopefully won through if affected.

    Having never ever spoken about any health issues or weird ways and I know we shouldnt be speaking about this,,, but in 56 years never having experienced (unlike the last week) CONSTIPATION Oh My God,,,I'm off to buy some liqorice  !!

    Best - Delmar789