Everything is a big pile of shit. Med's, Seizure's, having no friends, having no where to take Jamie, to help him/me make new friends, having nothing to look forward to, everyone knowing i'm a tumour twat, having seizures in front of people I know, people I don't know, side effects, tiredness, tiredness and more tiredness bla bla yack yack.....It's just all a big pile of poo.
The end
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Hi Jane,
ReplyDeleteSorry to hear life is pretty shitty from the sound of it, must be so hard with a toddler and not having the energy..so what are they saying about your meds now, stick with it or what? I know that Dr Parry said that it takes years to tweak some peoples medications in order to control seizures, do you feel any better on these ones? Seems like you are going round in endless circles here and I don't know what to say, on the positive at least your bloody tumour hasn't grown like mine has!! How weird is that mine has grown and I am not getting seizures and yours hasn't and you are still getting the seizures? I to have been feeling REALLY TIRED at the moment, have always been a night owl anyway and cannot get to sleep but around 5pm feel like I have been given an anasthetic and am going under sometimes have to have a 30 min power nap before cooking dinner - not a good time to be feeling low would be better when kids at school! Have been thinking about the future alot (or lack of it) recently and have started gathering precious items, photos, general things for my girls, I find it really painful but it is supposed to be something you do when you feel well and not when you get proper sick! It is really sad and I feel like my heart is being ripped out of my chest sometimes but I am doing it for my girls and for them to remember me now and in my past not as some tired, grumpy and sick mummy! Not sure if you have sky but I have been watching The mummy Diaries which makes the situation seem very real, but I am a realist and know that unfortunately there aren't any miracles for me so am making the most of now and doing as much as I can..not sure if you have seen this programme if you want any more info let me know, it is really difficult to watch but I totally get it, I nearly threw up during the first episode coz I felt so sad, but when it had sank in I understood what they were doing and totally agree with it. Keep your chin up girl, I know how difficult that is, if you want to meet up sometime let me know, I'm a good talker but an even better listener JX
This makes no sense, but reading that helped me remember that I am not alone in all this.
ReplyDeleteThanks.
Hi Julia,
ReplyDeleteThank you for taking the time to reply. I'm just so fucked off with med's and seizures etc, I didn't wanna reply and all that come out at you.
Just so fed up and fucked off with it all now, just don't even wanna talk about it anymore.
Anyway talking of growth, seizures etc and the difference between our tumours. It got me to thinking about the size difference and if that has any relevance? I think they say it doesn't!? but anyway, what I understand from what you have previously told me (from measurements etc) your tumour works out roughly the same size of a grape?? and it is an average size astrosytoma.
Where as mine is classed as a large astrosytoma, which is roughly the size of a small plum!!
Maybe that's why the whole seizure thing is different for me and you? do you think?
Did you ask Dr parry about your tiredness?? Is that related to meds? or something else do you think? is it worrying you because of the growth thing? weird it's always the same time of day though! I'd just get someone else to cook the dinner!
Anyway I should be in bed by now with all this tiredness x x
Hi Jane, how are things going? I think with what you say about tumour size etc..it is more on the location and where/which nerves etc the tumour is hitting? I think mine had quite alot of clear area around it (thankfully) so maybe it has not reached an area which affects seizure activity? I think mine will be more balance issues and problems with the bottom part of my left leg and foot as mine is close to the area that controls those. I think mine is like a long oblong shape from what I recall, can't think of an object to compare it to maybe a baby/small carrot!!?? Last appointment she said it was average size, obviously I don't know for def what it is as never had biopsy but they are thinking astro. Another girl I know who was in a similar situ to us had to have an op last year as tumour was causing her lots of probs, they removed 85% in the end, she was originally diagnosed with a suspected astro but it turned out to be an oligdendrima (I know I have spelt that wrong but can't be bothered to check) it is still a type of glioma but is the better one to have apparently. I did ask about the tiredness thing and she said it is quite normal with the condition, I also am not a great sleeper, I probably drink way too much wine and am a night owl, so never get enough sleep so could be anything causing it! I try not to think about it too much any more otherwise it would take over my life, as I said in my last post I have started doing some very difficult things for the future but I have always been organised! Hope you are feeling better, Julia X
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