We Talk Brain Tumours

Hi Mandy-good to hear from you. Hope your counselling is helping you. It is a major concern worrying about the impact of all this on our children isnt it? And with no one to share it with as we once would have. Had a phone call from a 'friend ' last night. Cant get her conversation out of my mind. Wont go in to it but she suggested it would be good for me to return to work as I was young and would maybe meet someone one day though she realised I wouldnt want to think of it right now. Well that was gracious of her. At least I dont need to be fixed up with someone today! though by the end of the week............?????  Strange thing is she lost her granddaughter to cancer in June aged just 3. Wonder what she would think if I said  " oh your son can have another baby-he is still young ". Couldnt be that insensitive though. I didnt react last night but today it goes over and over in my mind. Maybe I should give her a wide berth for a while. Sorry for waffle.

Daisie-hope you are getting through each of these early painful days.

To everyone else still struggling or who have lost - my thoughts are with you. x x

Yin and Yang - doesn't that conversation just speak volumns about your friends realtionship with her partner? Maybe she does think that her partner is expendable / interchangeable / does it really matter who I'm with? Your realtionship wasn't like that - you've lost a soulmate / true love. You're the "lucky" one here to have experienced that - your friend needs a) a good kicking for being so insensitive in the first place and b) sympathy that she doesn't have the depth of relationship that you had.

Sally - who has had a crap day - completely unrelated to BT. Have had a lesson graded as "unsatisfactory" and the whole school that I teach in has been classed as "failing". Great!!! In fact I'll come and do the kicking myself .

Thanks Sallye-yes you are right. Mark always said her poor husband was long suffering and she spoke to him like sh++t. She said the other day she should head for the divorce courts. Her hubby is such a lovely, quiet, do anything for anyone sort of man. Sorry you have had a bad day. Im sure it was no reflection on you. What time do you want to come to do the kicking? Chin up at least your bad day was unrelated to BT for once! Thanks for your empathy. I think you are right she was jealous of the relationship Mark and I had. It was unique and we knew that every day. Thank you Sally. Hope tomorrow is better day for you. x

Sally,
Think you have hit the nail squarely on the head there.

(They probably didn't understand your lesson.)
Miggins xx

Hi,

This is a question to people who have treatment for low grade tumours removed and returning to work.

About this time last year I began to suffer from epileptic fits. They were only partial ones and just affected the right side of body. I only really got made to pay attention to them when I had one in work and was carted to hospital.

It was then I was sent for a CAT scan and I got told I had a tumour in my brain.

The fits I was having were mainly caused by the swelling around the tumour and I was given the choice between tablets or an operation. Given that the first lot of tablets had done little to stop the problem and my own pig-headed determination that this thing in my head wasn't going to rule my life,  I even started a Positive Mental Attitiude group.

I opted for the operation to remove the tumour.

Just before the operation date however the frequency of the seizures began increasing to the point of one every 20 minutes and led to me being hospitalised and getting a blood clot in my lung. That day was my birthday :(

Despite that set back and warnings of the risks involved in October last year I had a low grade glioma tumour removed from the left side of my brain. It was sat on the part of my brain that controlled my speech and motor skills and some memory and I had to be awake for it.

The awake part is NOT as scary as it sounds, they just ask you count and say the alphabet. (I got told off for singing the Alphabet song even though it's the only way I know it!)

The surgeon at the time was very confident that they got the lot in one go and despite me still fitting that this will eventually go completely

How long do people usually take before thay return to work? I have currently been off work for 6 months and eying up returning but don't wanna go back to come back off again

 I have found it really hard to find any sort of similar cases to mine on other sites and am kinda feeling bit alone on this.

Any feedback or comments will be truely gratefully recieved

Hi Sam, firstly may I say that you PMA is outstanding and good for you!  I am sorry you have to find yourself here but we are a great bunch who give each other wonderful support.  I am responding as nobody seems to have been on here today and didn't want you left without some kind of reply.  However, I am not the best person to give the advice you are seeking, but there are others who will be, so keep checking. 

I am wondering if you have spoken to your neurosurgeon as he would be a good person to ask advice from.  I know had my husband's operations gone ok the surgeon had suggested he would be back at work in 6 months - and after that conversation speak with your employers and see if they would help you 'try out' working - perhaps one afternoon at first and gently increase as much as you feel is appropriate.  Well as I say someone better experienced will be here soon no doubt.

Y&Y - thoughtless - my counsellor would be asking if you would put that on the list of one of the most unhelpful pieces of advice someone has given you!  Makes me smile to myself now when people say those things that they obviously think are thoughtful but I am mentally putting them on the useless and unhelpful pile!!!!  And yes, not being able to talk things through is difficult and even though Peter couldn't communicate I still discussed things with him, it still helped. One of my friends was asking me what I was going to do with my wedding rings???  I replied, 'keep them on my fingers' - talk about insensitive!  xxx

Sally - hope you've limbered up, I'd hate to think you'd do yourself some damage especially on those so called experts!  I agree, here's to tomorrow - onward and upward!  xx

Daisie - xx and to so many others struggling xxx

Hi Mandy,

Just wanted to say thanks for being such a lovely, caring person, even when you are dealing with your own pain. How are you doing? It can be such hard work trying to keep a brave face on for your children and others around you. I had my first outing today, it was not easy and I felt mentally exhausted when I got home. I had to lie down and sleep it off for an hour. I visited my brother because it's his birthday and then picked up Graham's ashes from the funeral home.

My sister came with me to the funeral home and we had to wait 10 minutes. An older lady and her daughter came in with a plastic bag and said they were such and such's clothes. When asked had they put some socks in, the older lady said No and then started to say that the pants would probably need to be cut to fit him or maybe they would just have to cut a hunk off him, then laughed and left. I was horrified!!! Another lady then walked in with a plastic supermarket bag and said they were clothes for ......., handed them over and left. It looked as if they had just been thrown into the bag all crumpled. There was no emotion whatsoever. I really could not believe it and was very happy to get out of the place.

I'm not ready to take on the outside world just yet and I feel safest right here at home, so home is where I will stay for a while.

You take care of yourself, Peter was such a lucky man to have a wife like you, who loved and cared for him as you did.

XXXXXXXXXXXXXXXXXXXXXX

Hi Sam, Am Not sue as I can really advise you, but I'll try. I had a low grade glioma diagnosed 5 years ago after seizures. Because I worked with small children, I had to give up my job. I had my right frontal BT removed 4 years ago only to be left with more seizures. After 3 years of trying We finally got the fits controlled only to be told the Bt was regrowing. Apart from a small stint in a cafe I've never returned to a job as my my meds make me tired and generally a bit slow-brained(if that makes sense?) I also had 5 weeks radio. 6 months ago which hasn't helped.

I get pretty bored during the day sometimes and have started a few activities but it's hard to balance enjoying myself and not being too tired to get stuff done around the house, as I have a husband and 2 children. I feel a bit guilty if I've tired myself out shopping with a friend, then making OH cook dinner after he's been at work earning the money that keeps us. But I have to keep my brain active too.

I'd love to be able to go back to work, but with my health,kids and no transport?

I think if you feel able to return to work, then go for it, but make sure you check things out with Jobcentre as I believe your employers might even be able to get some financial incentives to get you back and you can still claim DLA if you only work a few hours.

Good Luck, Fitz

Hi Everyone, just hit that damned backspace button for too long and lost the whole flippin post - Bum!!

Daisie, your post is so lovely and generous - it's always nice to hear good about yourself - thank you x.  I keep my occupied every day with friends popping in for coffee or me going there.  Distraction technique I think!  Your comments on feeling exhausted ring true - it has been said to me that grief takes energy - it certainly seems to and I would never have been able to understand this part previously.  I too like to be in our home - it does feel safe - but I have ventured out, made myself infact as I was having panicky moments about entering places I knew.  I went out socially for the first time last Friday to a coffee lounge/wine bar Peter and I used to go to at least 4 times a week as he thoroughly enjoyed a real hot chocolate or a mocha - a big huge step for me and though the anticipation was worse than the deed and though I did cry quite a lot when I saw people everyone was kind and it was ok - but half a bottle of red the world does seem a different place, strange hey -but I won't be repeating it any time soon.

I haven't collected Peter's ashes - I think from your description I will be asking our close friend to do that - do you think those people weren't closely related or something?  I can't imagine though how you'd ask someone to do something so personal if they weren't closely related.

Daisie, you do right, just do as you feel.  I just want calm around me and to simply 'be'.  My counsellor says that nobody can avoid grief, you can't go around it, over it nor under it - everyone has to go through it at some stage.  Some will delay it but the void will hit them some time down the line.  I hope that I am going through it now as that feels more natural and appropriate for me.  It is so hard though, this long and lonely road - one without a destination or focus at the moment.  I suppose I focus on the now and get through that, one small moment at a time.  She also says that some people will want to pull you along, others push you along and others won't come along - this makes sense to me - she has wise words but I've told her not to tell anyone I've said that because if you knew her you'd think I'd gone loopy!!

I read your profile again today and I can only repeat those words you say to me really - Graham too was/is a lucky man - take care and be kind to yourself - always here if you want to chat xx

Fitz - I'm sure your husband doesn't mind one bit that you're off out keeping active.  I'm sure he would rather this than see you moping around the house every day bored - I know that our children and myself were only too happy to see Peter happy no matter why or what created that happiness and I'm sure he is only too grateful to have you at all - it makes us see how life is so precious - hard but precious - so don't feel too guilty, you deserve it.

xxxxxxxxxxx 

I just wanted to come on here as my Dad has just been taken to the hospice for a 2 week stay. I think it will be really good for him (and also good for me to have a break from looking after him) but when it actually came down to him going it felt very sad. I feel very strange now. Even my 18 month old got upset watching him go in the ambulance which was unexpected but made it even harder. I'm sure it'll be lovely there but it still feels strange. It'll be good to visit him there tomorrow so I can see what it's like etc and see that he's ok with everything. Anyway just wanted to get that off my chest.

Sorry for not writing any personal messages but I think of you all and always read everything

Rona xx