Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Hi, this is a bit weird

MartinB68
Posted by

Hiya,Cyril is on the left side of my brain high up just slightly forward of my ear, this was the MRI result from December last year, I had another one just over a week ago, so I’ll see if Cyril has gained weight over Christmas or remained the same size. I have found humour is the only way to deal with this, I’ve written a blog on facebook called ‘Cyril the Arsehole’ which is vailable to read on there for anyone to see. I’ve added some of the posts on here but there are quite a few that I didn’t put on here, mainly as I couldn’t remember how to create more blog posts on this site

It could be worse, Trump could be the US president, the UK could be going to hell in a hand basket and I could have brain cancer... Oh wait
furnitureman
Posted by

Mine is similar area on the left but just behind and above ear. Good luck with MRI result.

Barbaramarydoll
Posted by

Hi Martin.     How are things with you .    Don't  know if you read my post the other day as my iPad cut out just as I sent it , hospital appointment went ok on Tues .they said tumor is a bit bigger and there's swelling round about it now ,she said that's how I'll be feeling sick and headaches all of the time ,iv to wait now to see specialist at the beatson hospital to arrange radiotherapy , hopefully it won't be long . I'm glad you're seeing Dr next week instead of 8 weeks, bet your glad the waiting adds more stress , I read somewhere that you have to wear a mask when you're getting radiotherapy to the head , I'm really dreading that I think I'll freak out a bit.are you frightened of getting the surgery,   I keep getting my words and name's mixed up iv got one of my grandaughters staying with me tonight and I keep calling her the wrong name and she keeps saying gran why do you keep getting my name wrong ,what are you supposed to say to a 5 year old lol , i hope you had a nice time with your daughter that was home from uni .

        Take care.      Mary X 

Barbaramarydoll
MartinB68
Posted by

Morning Mary,

I hope you’re feeling ok with the news the doctor gave you on Tuesday I can understand that it will be scary.

A friend of mine has a similar thing to us in the noggin department, but he’s a bit further along on the treatment scale. He had radiotherapy and explained it to me like this, the make a special white plastic mesh that holds your head in the correct place. He said there is nothing to fear as its got lots of holes in it so you can see through it, hear through it and breath through it without any issues or worries. As my friend Dan said its a good thing because it holds your head perfectly in place, so you don’t have to :) I think Dan is just lazy. Ha ha ha.

Apparently you get to keep this thing at the end of the radiotherapy sessions if you want it, so something for the grandchildren to colour in and play with.

What to say to your granddaughter, I think you don’t really need to try and explain the scary bits for obvious reasons, plus her mum and dad will be able to handle that part far better I’m sure. I think I would make it a joke with her and say ‘Gran’s going bananas again’ then go through everyones name on purpose, including any pets names (if you are a family with pets). Making it a joke will make her giggle, it will also calm you down and give you chance to get the right name in your list ready to say. If you have got a pet dog or cat maybe start if calling her by that name, then when she says ‘Gran I’m not a doggy’ you can make some jokes out of it.

I too am suffering memory wise, it took me twenty minutes to remember how to spell count the other day and my younger daughter (18 this year) was asking me if I wanted some lunch last week and I was trying to ask her to microwave me something. The closest I got in ten minutes to microwave was the phrase ‘heaty telly thing’ I find it very funny now but at the time it was incredibly frustrating.

I had a trip to A&E yesterday evening, my eyesight had got steadily more sort of soft focus and blurry throughout the afternoon. I was getting a bit scared by this, I need to get my eyes tested. I’m 51 in a few weeks time and really need glasses,  but a combination of refusing to admit this and more so not being able to afford to get an eye test or glass at the moment, have meant I just ‘get on with it’.

But I called NHS 111 and spoke to a-lovely and helpful lady who said it was A&E for me, so off we went. It was a busy evening in there but the lovely folks got around to me, checked a few things and then I saw a doctor who did a load of eye tests. He said its ok doesn’t appear to be anything a miss, but I have to go back this morning for a-few more tests just to makesure.

I think we left our house to go up there at about 6.30pm and got home at about 11.40pm, so both my wife and I were knackered. I have to go back to the main hospital at 10.30 this morning for the other tests.

My final hopefully helpful time I too write these on my ipad and have also had many occasions where the Macmillan thing seems to have timed out or whatever before I finish writing my replies. I now write them on my ipad notes thing and then copy and paste it so I can just plonk it all into a Macmillan reply.

I go through phases of being nervous about the up coming operation, some days I’m ok, in fact most of the time I’m ok I guess. I did a lot of reading up about it when I first knew I was going to have it which has really helped me understand it. I think as I’m a ‘sort of’ engineer for work (I design and make home cinemas and home automation systems, etc) if I understand it I feel ok about it, if that makes sense.

Anyway, as always my best wishes and a big comforting hug from me to you, it will all be ok, but its only natural to feel scared and thats fine too.

Take care mart xx

It could be worse, Trump could be the US president, the UK could be going to hell in a hand basket and I could have brain cancer... Oh wait
furnitureman
Posted by

Hi there

A bit tricky with the op but you will get it ok. The injection is ok , I actually injured that  bit (Weird)

I had the operation nearly 2 years ago.  Good luck to the next bit.

By for next

Furnitureman

MartinB68
Posted by

Hi Mary hopefully this doesn’t scare you, certainly not my attention. This is a radiotherapy mask another friend of mine had, the pen cross marked on it was where they were aiming the scanner at. Hiswife Beccy says the keep it on the drinksshelf at home now lol  

Mart 

It could be worse, Trump could be the US president, the UK could be going to hell in a hand basket and I could have brain cancer... Oh wait
Barbaramarydoll
Posted by

Hi Martin .how have you been feeling today hope you're a bit better , how did you get on at the hospital, hope everything was ok ,it must have been scary having that bother with your eyes, I'm bad enough with the blurred vision , its just one crap thing after another, hope you didn't have to sit about the hospital to long today, thanks for the photo of the mask I'm ok looking at it just hope I'll be ok when I'm wearing it lol . I'm having a crap day today just feeling rotten , 

Take care     Mary X 

Barbaramarydoll
Barbaramarydoll
Posted by

Hi Martin .    I haven't heard back from you in a few days hope you're ok and things went well at the hospital the other day, is it this week you see the consultant , I got a phone call today to say I have an appointment at the beatson hospital on Thursday to see consultant and discuss treatment I'm crapping it now it makes it more real having to go back to that hospital, I didn't think I'd ever be back there again ,   take care and hope to hear back from you to let me know your ok .      take care .          Mary x

Barbaramarydoll
MartinB68
Posted by

Morning Mary, hopefully you saw my message the other day with my grandmother tips?

I’m off to Addenbrooke’s tomorrow afternoon, I had a pretty rough few days (read that as a rather large understatement) after the thing with my eyes being really blurry last friday night and a few hours in A&E I had an appointment back at the hospital on saturday morning. I had a full eye test, the kind doctor didn’t find anything wrong apart from once I’ve had the operation I need to get my eyes tested and glasses.

My wife and daughters had gone to Cambridge for the day to get eldests laptop fixed or upgraded or something I can’t remember now, thankfully it was under warrenty as we couldn’t have afforded it ourselves. A friend gave me a lift home and I went to bed for a few hours, ever since then I’ve had a real pain on the left side of my head where the tumour is. Nurofen only sort of dull it, so by yesterday I was feeling pretty low (I have bipolar too, so for ‘pretty low’ read the truth which is I felt like no one loved or carried for me and I wanted to die)  my daughters went to London yesterday for a few days to see a band they like and stay at the eldests uni halls. Since Saturday afternoon I have felt like everyone hates me at home and I was iceolated. Its a hard thing to explain, but it felt like there was only one solution so I ended up writing a note and then just wanted to end it all. I know I’m nothing if not dramatic, but thatshow it felt. My wife got home from work and eventually came upstairs, she asked me how I was (she knew I wasn’t good within anoit 2 seconds of seeing me) and I just lay there and told her what I’d written and how I felt.

She left to take the kids to the station, before the left they both came to say good bye, but it just felt like mum had sent them rather than they wanted to see me. So once they’d gone I was a sobbing heap, which continued for about two hours. My poor wife went to see a friend of hours who is a nurse and ended up breaking down there too. So she got home to find this sobbing mess called her husband.

So as a few days go I can say they weren’t the best, but Susie my wife and our friends will do their best to stick me back together again I guess. All of the above sounds very dramatic I know but its just what happened, its no ones fault, the kids weren’t the cause of it, but their just having to say goodbye and not wanting to was the thing that finished me. I have a friend coming to ‘keep an eye on me’ today so Susie could go to work without panicing.

But, apart from that I’ve been great ha ha ha

I hope your doctors appointment goes ok and thank you for your continued messages they are very helpful and kind.

martin

It could be worse, Trump could be the US president, the UK could be going to hell in a hand basket and I could have brain cancer... Oh wait
furnitureman
Posted by

Hi Martin

I have some pretty bad times for the last two years. The morning was physically bad with blood nose, blood drop pressure dropped low etc but the front door bell rang and my little grand kids turned up, wanted to brush my hair and they are great. It is all a reason we are here.

Don't take the Nurofen and use either Brandy or Parasitamol and sleep only on the opposite of your devil. I found my ears and eyes went painful so sleep the other side, sort outs the problem.

I had to stop my  work as a lawyer, stop driving and all the using things so keeping me busy as a French Polisher and repair of furniture and love it.

Sorry for my typing.

Don't make yourself sorry, worst thing to do.!!!!

Furnitureman 

MartinB68
Posted by

Thank you, yes its all a bit of a slog today. I am a home cinema and AV designer and installer by trade, but not being able to drive or work at the moment in any capacity has proven very difficult. For both financial and mental reasons, one of the many reasons I ‘crashed’ so spectacularly yesterday I think.

but slowly recovering, I’m glad you have managed to change your profession to something you love, thats been the hardest thing for me at the moment as I truely love what I do, so nit being anle to do any kind of work has been very hard to accept.

It could be worse, Trump could be the US president, the UK could be going to hell in a hand basket and I could have brain cancer... Oh wait
furnitureman
Posted by

I have a home system, Sonos etc but cause me grief particular have problem even on turning the tele.

I have also some music equipment for outside for concerts. I have a garage full speakers, lights, mixers etc.

Every xmas the locals put together a carol concert , make a stage, I will try to have to try  attach. it is now getting for me a big problem putting together with the electrics.

If I have to go to the big carol above I look forward.

Barbaramarydoll
Posted by

Hi Martin and Cyril.      Hope you're feeling a bit better today, I can totally understand how you've been feeling it's one of the worst feelings ever when your so low and feel as if you don't want to carry on .I myself have been there as I suffer from depression and it's all very scary when we feel like that , I just hope you're starting to feel a bit better, the thing is with our kind of illness it's hard to carry on some days ,  I suppose all we can do is try our best and try and be strong ,as you know it's not easy, is it this week you see the consultant , hope it is as all the waiting about just causes more stress, worrie and fear , I went to my appointment today to see consultant thinking he was going to decide what radiotherapy I was getting, wasn't expecting the news he gave me , because of all the symptoms I have and my tumor is small just now and they thought it was secondary cancer coming from the breast cancer I had years ago , they now think I have cancer in the lining of the brain which isn't the best of news , iv to go into hospital next week for some more tests unfortunately when it's in the lining a lot of the time it doesn't show up in the scans , I'm so gutted and terrified now of what's a head of me and for how long , sorry I'm rambling away here as if you haven't got enough of your own worries , but its good to post to others who knows how it all feels ,      good luck for when you're seeing your consultant hope you enjoyed your friends company today and had a good blether ,

Thanks for answering my posts it helps and means a lot           

       Take care.                Mary X 

Barbaramarydoll
MartinB68
Posted by

Hi Mary, 

Yes, from Friday up until my ‘total crash’ on Tuesday night it was frankly shite, but thankfully by yesterday morning I was a lot better and about as ‘normal’ as I get

This will be quick for now as I’m knackered, but the neurosurgery team I saw yesterday are really honestly marvelous, I met the head of Addenbrooke’s neurosurgery department who is the chap who will be doing my op, plus two of the lovely specialist lady nurses who are frankly just wonderful, funny, caring and brilliant ladies.

I will get a letter in a few days with my operation date, which will be towards the end of this month and another letter with the date of my pre-op tests which are about two weeks before the actual Black & Decker/melon baller operation day. I feel far happier and I’m ‘ready’ for the removal of Cyril, he has beem stuffing his face with Pizza, KFC and any other fattening food stuffs since Christmas so he is now twice the size he wass at Christmas.

I’ll message again soon with more details once I have my operation date.

thank you as every for you messages and kind, caring thoughts and positive vibes, they mean a lot to me.

cheers for now mart  

It could be worse, Trump could be the US president, the UK could be going to hell in a hand basket and I could have brain cancer... Oh wait
Barbaramarydoll
Posted by

Hi Martin how are things with you hope you're ok and feeling a bit better , have you got your date in for your opp yet , you'll be stressed out waiting for letter   .I was supposed to go into hospital as a day patient this week for some more tests but as usual I had to phone them , it will be next week now , how's your eyes been have you still been getting a lot of blurred vision, 

Take care .     Mary X 

Barbaramarydoll