We Talk Brain Tumours

Hi,

I have never written on a site like this before but 2 weeks ago I found out that my Dad has a brain tumour and am desperately trying to find some support and advice.

I received a phone call at home 2 1/2 weeks ago to say that my Dad had been acting very oddly - getting locked out, having trouble remembering dates and times, missing appointments, not eating etc. I had not noticed any of this as I live 100 miles away and my dad seemed fine the last time I saw him at the beginning of February. My Dad also lives by himself so no other family members had noticed this change either.

I went home straight away and found my Dad in a very confused state. After an emergency appointment with a neurologist and an emergency scan it was confirmed that he did indeed have a brain tumour although we are still awaiting a biopsy to find out exactly what type.

My husband is being incredibly supportive but I still feel so confused and alone. Especially as my home, my job and my life are all 100 miles from where my Dad lives. Being an only child I feel that I am the only one responsible for his care but I also have responsibilities to my family too. I am feeling very confused at the moment as to how I am going to care for my dad and my family when we live so far apart.

Is there anyone else out there in a similar situation who can offer some advice? Am so confused at the moment and would appreciate any words of help or support.

Thankyou x

Hi HSG,

We appear to seeing a few new arrivals at the moment.  You are not the only here who has a diagnosed parent who lives a fair distance away, I'm sure they will be able to give you some good advice.  Does Dad yet have an allocated Macmillan or oncology nurse?  If so it would be worthwhile having a chat with them. If not could you arrange to speak to his GP as they are generally the co-ordinators for acquiring additional support.  Is Dad back home and waiting for an appointment for his biopsy or is he now awaiting the results of a biopsy? We all fully appreciate how you are feeling and empathise with you. Please stay with us and I'm sure there will be others along soon who can give you far better advice than I.

Best wishes, Martyn.

hi everyone.

thank you all for your kind words and advice, hope your wife is doing ok too Martyn.

Hi HSG, i have also recently foun dout my dad has a brain tumor (brain stem glioma) and i also live a distance form my dad. If you feel the need to chat your very welcome to give me a buzz, lol. Im new too so still trying to find my feet and work out whats what. But huge hugs hun, its never easy when some one close gets this.

having a bit of an eventful time at the mo as my great gran (100 yrs) is in hospital with high blood sugar levels (29.9) so now panicing over that too. No new news on dad yet but still awaiting the specialist to ask permission from my dad to talk to me, he has had 2 chances now and not mentioned it once to dad. Grrr.

Anyways how are you all feeling today, the suns out here in cornwall so i can take my 4 kiddies to the beach today so got to be thankful for that :)

from fiona in cornwall xxx

Hi Fiona,  I really envy where you live with weather like it is now, in fact envy whatever the weather.  I do hope G Gran  makes a full and speedy recovery, did she receive her greetings from HM? Some, no many medics need a good prod from time to time. When you do eventually get to chat with him make sure you have written down all your questions and insist on answers in plain English. I act on a need to know basis which quite often labels me as a nuisance, but hey who cares as long as I do my best for Doreen!  It's good to see your support already for another new poster, thank you. 

Take care, Martyn in Newark unfortunately. xxx

hoping g gran makes full recovery too, what made her worse is she contracted MRSA while in there or she prob would have been out last week. she did get a birthday card from HM, she even went into the worldwide seach engines online for being so healthy considering she drinks n smokes (lorna gobey if u fancy a search lol). She also lives in cheltenham where my dad is.

Im like you then too Martyn, need answers when when they are available, i hate just waiting with no news when you know its out there waiting to be siezed. its how i prepare myself for things. i have 4 children, 1st mikey has autism and he is 9. Kyle is 5 and has high blood pressure and low iron levels and the other 2 are fine - but im used to searching things but i have found finding info about dad 10 times harder, almost like they are scared to be honest with you. tho im sure we will all be told when we need to be if i dont get it out of them first lol.

im very willing to help anyone i can on here or otherwise if i can, tho i must admit i do feel a tad out of my depth on these situations.

take care fiona xxx

Hey There HSG

I am in a very similar situation so if you ever want a chat just let me know.  Have a read of my biography. 

It is such a scary, horrible thing to have to deal with but the people on this site are amazingly supportive and I have found out more answers on here than hours of frightening internet research.

Take care xxx

Hi Fiona,

I've just spent a little while reading about your G Gran, what a woman and still playing skittles!  I like her tastes, whisky and guinness, does she by any chance also like Terrys chocolate oranges? if so I might have a few years left yet apart from the cigarettes, but I'll start again if longevity is guaranteed.

Hi LDW,  best wishes to Dad.

Martyn. xxx

lol Martyn, im not sure about the terrys chocolate orange, but im sur eg gran has what ever she fancys, she usually does. Like drippers, a cheltonian cake very high in sugar (prob doesnt help her diabetes tho) lol.

HI LDW read your biography and its sounds like your in the best place too, here. Its good to know we are not alone when we feel scared for ourselves or a loved one and tho ive only been here a while, strangly its helping and i agree the internet is a very scary place. i dont know much about my dads tumor, tho neither do the drs so it seems, and i see life expectancy from a few mths to over 10 years - would be nice to get a rough estimate tho.

take care xxx fiona xxx

Hi to everyone especially the newbies. Sorry you have had to find yourselves here but youare in the right place for the help & support you will need on this hard journey we all face.

Mandy So sorry to read about your daughter. I hope the news will be good whenever you get the results but one things for sure she has the right person by her side to help her. Take care,

I'm looking for some help please. I know on the old WTBT site that reference was made to a website on brain tumours that told it as it is. I remember reading advise that you should only go there when you wanted to know the reality of the situation as it was very hard reading and was not for the fainthearted. I can't recall the exact name of the website and I've tried searchiing for it on the old thread but not been successful. Can anyone help please ? I know it may sound odd that this far down the line I want to read this info now but whenever on this bloody awful journey is there any normal behaviour from a carers point of view. Things are happenning so fast with Pete's condition that I feel I need to know more somehow. Not making much sense........put it down to lack of sleep!!!!!

Best wishes to all

Love Sue x     

Hi Sue,  If you request me as a friend I will send you the link.  I don't really want to post it just now for obvious reasons.

Best wishes to you both. Martyn XXX