We Talk Brain Tumours

Hello Opal and thankyou. How is your husband and what were his symptoms and treatment? It's so hard isn't it living with a timebomb.

Good luck with your scan Debs and thanks.

Hi all, i am so sorry to everyone effected by this awful disease. I'm new to the sight and am here because my amazing mum is terminally ill with gbm grade 4. It seems like such a struggle to just cope at the minute. Im finding the friction between her and my dad.so hard to handle and really dont know how to help. Ive tried talking to them both to go a little easier on themselves and each other but im at such a loss. I feel so awful to be feeling sorry for myself when some of you have experienced such awful losses but i suppose i needed to talk somewhere people will understand. Lou x

Helen,

Just to share with you how my hubby and I have dealt with stuff so far. The first thing I did when he got home from hospital was to  discuss the practical regarding funerals etc etc.  I dug out all the policies, checked everything was in order, and between us we discussed what my husband wanted for his funeral. It was hard, very hard but its now out the way, done and dusted. Its now shelved away in my brain in what I hope is a VERY long time! I would also like to mention that I discussed what I MYSELF want for my funeral. Its a conversation that people never think or want to talk about but now its done thats it. This is not for everyone though. Its a totally personal thing.

You mentioned that you are fake with each other. We have those days too, when we wish to hide our feelings and emotions simply because we don't want to talk about them all the time. However we also are at times, very honest with each other and it is when we are both feeling up to it. We have a really good cry and will allow the rawness to come through. There are also times when we feel really irritable and snappy and we will have a good old shouting match and THAT does us good too!

The thing is, what works for us won't nessecarily work for other people. Some people are in complete denial about their illness and prefer to bury their heads in the sand. Some people find it easier to share feelings than others.

My hubby - who is Mr T on here!- this week has been feeling a bit muzzy headed. Last lot of the chemo is next week and then its a case of seeing how things go.

I just take one day at a time. However I am so aware of the quality of life that he has compared to some of your loved ones on here and I just take each day and enjoy! We have got lots of weekends away, some concerts and shows lined up and I hope that he is well enough to enjoy them all. I have only booked for this year. I don't allow myself to think more than 6 months ahead..and I think thats a good thing for us both.

Anne, can I just say how valuable all your posts are. You have so much good advice there and you and also Martin and many others a big support and help in those uncertain early days.

Julie

Hi JMS

Thankyou for including me in your post - it really means alot.

The one thing that kept us going was to stay positive and believe that you will beat it.

Steve fought it to the end and never gave into it.  It saddens me that his frame of mind still wasn't enough.

I feel that if I can help others despite what I have gone through then I try to do this as much as I can.  Alot of the people who I used to talk to seem to do not post as much now but that is understandable.

Take care JMS

Ann x

Hi Juile

We were exactly the same as you and your husband - we cried together and we would have a day where we shouted at each up then ended up saying sorry and having another good cry and a cuddle.

Sadly for us, it got more and more difficult because of Steve's mobilty so we never had anymore holidays and always difficult to go out - we were housebound for 9 months because of steps and only went out for hospital appointments.

Steve always seemed to accept the diagnosis and wanted to know what he was up against and always believed that he would beat it but he could never accept why it was on the movement part of his brain and caused him to loose the use of his arm which affecetd many aspects of his life.

We will never get the answers - but you have to fight on.

Take care

Ann x

Helen,

I am also the child of a father who had Grade 4 tumours - sadly he passed away on Christmas Eve 2010 and I don't necessarily have the answers to your questions but am happy to share my experiences with you.

I did have "the talk" with my Dad which came after a bout of illness during his treatment that was not expected - we thought we were going to lose him really quickly.  That did not happen but it scared me that there were so many grey areas over not knowing what to do for the best - I was in a weird situation whereby I was a bit "in charge" of the family for various reasons.  I told my Dad that because of what had happened to him so suddenly that things might have happened that he would not have wanted so I asked him if we could have a conversation about it all.  It was a bit clinical but at least I was assured that I knew his wishes - we also talked about things like whether or not he would want "heroic measures" taken etc.  I know it is a really tough one to handle and emotionally it was a really horrible conversation as it meant that I had to face up to all sorts of issues which were slightly buried, ie him actually dying, but I am so glad that I did it because it meant that in his final days and when he did pass away we knew exactly what to do and that it was exactly what he would have wanted.  I knew that I could never save him, but I do take comfort that we did right by him all the way to the end.

I did also talk to him about exactly how I felt about him and what it meant to be his daughter and shed a lot of tears through that conversation.  Again, this came about because I thought that I had lost the opportunity to do it when he suddenly became so ill that the Dr's thought he wasn't going to make it.  I felt I had a second chance and I took it and I don't regret it - I knew that at whatever point he left us, I would not be feeling any regrets about not having the opportunity to say what I wanted to say.  My Dad was not an outwardly expressive person in relation to his emotions and feelings and had always been the one who looked after us - so it was tough, but so worth doing.  I totally understand what you mean about being fake - my Dad never asked exactly how ill he was so sometimes it all was a bit artificial, but I also had to respect that that was how he was chosing to live his life so at times I felt I did play along and would then go home and cry buckets.

My only advice about getting help ready for when you need it is to do this as far in advance as possible and don't be afraid about being demanding about the type and frequency of help you need.  Getting your father "in the system" as early as possible is really helpful.  My Dad's GP was also very helpful and would come out at short notice if required and was very good at getting other things to happen.  Our experience was that once the help we needed was up and running, it was great, but sometimes getting it up and running was the challenge.

Thinking of you (and all others on this terrible journey).

Samantha

Hello all.

It Took me a while to join up here, after reading so many posts on this hideous disease.

Firstly i'd like to offer my sympathies and support to everyone who has lost a loved one, or has a loved one currently undergoing treatment. My mother (58) was diagnosed in June of 2010 after having a seizure one teatime following a day trip to York with the rest of my family. I was out on the bike with friends at the time and found out when I got home.

At first, I had inclinations that a tumor was responsible and after all the tests, an operation was preforemed to remove the ''suspicious mass''. It was later examined and found to be a G4 Glioblastoma.

I have been looking and quickly found this board and other interesting articles on the desease. My mother has done the Radiotherapy course, which she responded really well to and is doing the tablet chemo course of which i'm not exactly sure on what that entails. It started in October and she visits the hospital once a month for tests.

She was responding to this chemo really well until around Christmas when they spotted a suspicious mass on the scans. This appeared in January and the doctor decided to lower her steroids to see for changes such as seizures and fits.

Well,  it had the results that none of us wanted to see. For the last 2 weeks my mother was getting very weak - slowly walking upstairs, spending more time in bed. This week she had issues with speaking properly, though she knows what to say, it doesn't come out. We believe this to be mild seizures so the doctor advised her to reinstate the steroids. Friday and Saturday the seizures got worse and at 1.45am on the 6th, my dad found her lying on the floor in her bedroom.

She had had a bad fit, probably fell out of bed and was unresponsive but conscioius.

A rapid-response paramedic arrived and assesed the situation where an ambulance arrived and took her to the hospital.  She had another fit whilst being taken to the ambulance.  Teatime on the 6th, after the doctors upped the anti-seizure and steroids my mother had 2 more seizures. She is having an MRI on Monday 7th and I will update this with the results.

We will know more in time. I hope the tumor hasn't become too advanced and can be dealt with.

Stephen.

UPDATE:

My dad and brothers visited my mother today. She has had a scan but the doctors were not there in the evening so we still don't know what is going on.  My mother is still having seizures.

Hello Stephen

So sorry to hear about your mum. Lets hope the increase in steroids will help her symptoms. I have found this site so helpful especially late at night when you dont want to go to bed as you know you will not be able to sleep with worry about what the next day will bring.

This disease is so unfair....what has happened to all our plans?

Opal

Hi Opal.

Thanks, this site is excellent for information and talking with others who have gone through or are going through this evil desease.

Hopefully we will know more tomorrow. I must point out that my mother does not know that the desease is terminal. She just thinks it's something that could return and will never go away.