We Talk Brain Tumours

Joanna, as always - thank you.xx Dad has always been rather preoccupied with his bowels and is complaining of a lot of pain and pressure under his ribcage on his left side. He doesn't want to eat anything as he says he feels so full all the time. He feels like he needs to go, sits on the commode, but nothing.

I have just had a rather heated conversation with my mum which has left me in tears. At a time when we should be pulling together, we seem to be growing further apart. I have a sister who lives in NZ so it is pretty much only me that mum can take her frustration and anger out on and she does. Regularly. Mum is absolutely adamant that she won't let dad be moved in to a nursing home of any kind and I am worrying about what will happen when he is discharged from the hospice. I tentatively broached the subject with her this morning and she let me have it. Both barrels. Mum and I have always had a difficult relationship and she is much closer to my sister. I am much closer to dad and it was always him that stuck up for me. I know I sound ridiculous - I'm 38 years old and whingeing that dad isn't there to defend me. I can just see years and years ahead of me and mum struggling not to wind each other up while my sister carries on with her life completely unchanged.

Gosh, I'm selfish today. Sorry everybody. I just feel completely alone and really, really scared. i am not going to the Hospice today as I am in no mood to see mum. I just want my dad.

Lots of love to all.

Naomi.xx

Naomi,

Big hug to you, it is soo hard.

Sounds pretty much like us at the moment.  I have had a huge row with my dad and so has my sister.  We are falling out with other sister too.  There are five children in our family and as usual, its me and my sister taking all the pressure and stress of this as well as ensuring someone is constantly with mum and looking after dad and getting the house ready etc. etc.  The other three children don't have the pressure at all of any of this and two of them just pick and choose when they want to visit, change their mind at the last minute which results in me and my sister picking it all up as well as work and our kids.  Am sick of their lack of responsibility or conscience.  But, if they don't want to visit I can't exactly force them to be with their mum as much as they should.  Mum is coming home from the hospice today but yesterday started sleeping all the time and then the doctor asked her where she would like to die and does she have any other preferences!  Talk about hit with a sledge hammer and one sster and brother doesn't even know as they didn't turn up for visiting!  One sister looked after dad and I flew down from home to be with mum.  I don't resent doing any of it either, I am there every single day, sometimes during work and then after.  I just wish others in our family were a bit less selfish and helped out a bit more.  I was talking to another family at the hospice last night and all they have done is fall out!

Mum is constipated all the time at the moment, despite being on laxatives every day and she is very uncomfortable with one huge tummy!

Hope you are okay today, thinking of you xx

Eug,

No don't assume months, like others have said glioma's come in many shapes and forms from grade 1 & 2 (often referred to as benign, but can change to higher) and grade 3 & 4 as malignant.  I have a grade 3 glioma (oligodendroglioma) fully resected in Jan 2009.  I was told 2.5 to 3 years, well I am at 2 years 8 months and am no different to how I was after Raditiotherapy & Chemo.  No real concentration or short-term memory to speak of BUT very much 'normal' to look at (well kind of lol).

We are all individuals and NOT statistics, they are merely guidelines - three people can cook a meal using the same recipe and have three very different results.  Think positively, if it was a high grade or something the hospital thought warranted urgent attention, you would know by now.  I had a seizure on a Thursday, found out on a Tuesday I had a brain tumour and in a neuro-surgeons office two days later. 

If there is one sure thing with brain tumours, there is nothing normal about them, we all react differently to treatment and age/lifestyle factors all play a part, so have a good chat with your GP but don't get into that morbid doom and gloom rut that most of us have certainly been in (or like me, dip in and out of).

Good luck with your journey.

Waving hi to all our fellow passengers and as always, love & strength to those who want or need it.

Naomi,

You're not selfish, just wish I could give you a big hug and a kiss on the cheek to tell you to keep your chin up, you are dealing with a lot right now and I am sure your Mum feels awful after she has balled you out but perhaps can't bring herself to tell you that.

You whinge, moan, lean, scream, rant as much you like, we are not here to judge, but to listen and lend a caring word or ear to each other.  I have said before, collectively we have the biggest shoulders and can carry the burden.

Much love & strength,

Hi Eug sorry your here ! Id write a big list of questions for next time you meet your consultant that way you will get everything answered that you want answering. Benign or not BTs are nasty, nasty,nasty!!

Deli

There are lots of medications for constipation' and the problem can add to your fathers other problems, such as pain, incontinence confusion etc ask what hes,on movicol is very good but it has to be taken in water so if your Dads not drinking very much may be a probem to take. They can give a combination that may help him as this may be the least of his complex problems but it needs to be sorted for him to be as comfortable as he can.

Has anyone had a run of double vision when the tumour has been stable? just asking as H seems to be getting it more often, shes also sleeping more than I would expect I have been told its because shes a teenager!! but teenagers go to bed late & get up late not go to bed early then sleep a lot of the day. Dont know how shes going to cope with Uni but we are thrilled thats shes done well enough too given what we were told.

Debs do you find things more difficult as time goes on? re memory etc?

Love to everyone else Dianne J x

SWorthey and Debs, thank you for your kind words (and Dianne too). I'm at the end of my tether with it all. My sister emigrated 18 years ago and has only seen my parents a handful of times in that period. She hasn't been home once since dad was diagnosed, despite my parents putting money for her fare in her bank account. Eventually, she will have to come to terms with the decisions she has made. One day she will wake up and realise, I hope.

My mum is so resistant to any help and it's doing my head in. My friend's mum-in-law lives not far from my parents, is at the same stage of the same illness and she has been means tested and has been allocated a lovely room in a private hospital (having been deemed not ill enough for hospice yet) free of charge. I was trying to relate this to my mum as she has done nothing about speaking to a SW or her Mac Nurse about what is going to happen to dad after discharge and she went mental. I won't say anything again, I've learnt my lesson but it doesn't stop me worrying about my lovely dad. I have been very respectful thus far of decisions mum has made regarding dad's care, even if some of them have been the opposite of what I would have done, but I am fast losing patience.

I read somewhere that a terminal diagnosis doesn't change things within families. Those that cared before will care more and those that didn't care, will care less. Just the way it goes.

Love to all.xxx

xxxxx Deli You are right your sister will have to live with her behaviour xxx

Dianne, dad was on Movicol initially combined with Sennokot (spelling?) but is now having suppositories. They are supposed to work within ten minutes (allegedly) but not yet for dad.

This may be completely unrelated to H's case but I have recently been diagnosed with an overactive thyroid (Graves' Disease) and the two main symptoms were visual disturbances - mainly double vision and exhaustion. Might be worth getting her blood tested. Hope it gets sorted out before she starts university. Good luck.xx

Dianne - you are right but do you know what, if they are that kind of person who doesn't react or respond, like half my family, I have a feeling they won't feel any different after the event as its just not in them.  I keep thinking that my siblings are going to have to live with how things have been but I bet they tell themselves they are doing all they can and they think they are!

It's sad but, it is such a frought time that surely the arguments are normal, a way of venting anger at what is happening to us all in different ways?  xx

Where is Pete these days - Pete I hope everything is okay with you and Ali xx

Dianne - I have just been reading your biography and have to say, sobbing all the way down (another teary day for me) your daughter is absolutely amazing, you must be so very very proud of her.  If you have any links where we can help to publicise her fundraising, I will gladly do so xx