We Talk Brain Tumours

Joanna - I am so sorry to read of your dad's death. However much expected, it still comes as a terrible shock. You have been through too much this year. I hope the upcoming months are peaceful for you.

Martyn - I am pleased for you that Doreen's goodbye was as you had wanted it. How lovely that the sun came out for her committal. I am continuing to think of you and your daughters during this terribly sad time.

Pam - please keep coming on here and ranting. When dad was going through the same stages as Tony, this site kept me sane and helped me to constantly remember dad's behaviour wasn't in his control. My sister lives in New Zealand and she came over for the last week of dad's life. When he was deeply unconscious, my sister commented on how hard it was to watch him be like that. I knew then how much of dad's illness she had been protected from. That wasn't hard - watching him swear and shout and throw things, that was hard! My heart goes out to you and just as you think you have nothing left, you find some more strength from somewhere.

Debbles - what a marvellous achievement by all of your family! Cracking news on the donations and gosh what a beautiful photograph of your lovely dad. What heroes dads are.

Ange - beautiful letter. G will be so very proud of his girls.xx

_Debs - stay positive, you are an inspiration to all of us on here. Keep on fighting and making us smile. Nonetheless, scan days must be terrifying so know that we are all silently with you.x

Apologies to anyone that I have missed.

With love,

Naomi.xx

I hope the start to the new year has been peaceful and kind to all on here.

Yesterday I felt like I was leaving dad behind then I felt I should try and be more positive, put him to the back of my mind and move on. Today I just feel blah.

We went to see mum today (I hate being there, it is so obvious then that dad is missing if that makes sense) and I asked for dad's medical letters as I needed to read them. I read them tonight and I don't know how I feel now. In 2007 when he had his first seizure he was diagnosed with a "low grade left hemisphere glioma, liable to transform". Mum and dad didn't tell me this. To be fair, mum hates anything medical so it is likely she would have chosen to ignore it until faced with the reality but I know in my heart dad would have Googled it. When I was reading them at first, I felt cross I was kept in the dark but now I just feel proud of dad. He told me back then he had a miniscule benign tumour and I was lucky enough to be naiive about all this brain tumour stuff. He knew all along and didn't tell my sister or I .... He had MRI's every six months and always told me there was no change. Reading the letters I can see his tumour was changing (in minute ways but still changing) all along ....... Typical of parents to forever want to protect their children.

Right now, I just miss him. Plain and simple. I was so close to him and I expected to be over it by now.

With love to all - keep fighting, keep surviving.

Naomi.xx

 

Dear Ange/Naomi

 

Thanks for your posts. People keep telling me it’s the drugs but it is so hard to see somebody you love be so awful, not just to me, to everyone who he has been close to. It gives me some reassurance to hear other’s stories, not that I’d wish this on anyone.

 

I have posted in great detail about the awful things that Tony has been up to over the past few weeks and I feel awful about it. I know that everyone understands that it’s his condition but I’d hate to think that people thought him a monster.  In between the horror, he also did some completely cheesy romantic lovely things. For example, for Christmas Day he arranged for a florist to create a table decoration that was made up of the flowers we had in my wedding bouquet; he bought me a ring with two rubies in it because he said it represented our two hearts always beating together; he designed a monogram made of our entwined initials, had it engraved on to a ring which he now wears and has instructed should never be removed; he bought two cherry blossom trees for the garden because he knows how much I love them. I could go on but I think that’s enough cheese for one post!

 

As many of you know, Tony’s behaviour has been erratic for some time now. On Friday he had one massive rant, after which he fell asleep. He has been asleep pretty much the whole time since then. The children have been telling me for a while that he is sleeping more but I just haven’t wanted to see it.  Anyway, he was taken in to Queen Alexander Hospital on Saturday night with a high temperature amongst other things. I saw the doctor today who says they will keep him in and try to get to the bottom of things. He is basically going to try to show that his symptoms are due to an infection somewhere.  Of course, if there is no underlying infection then we all know what the next option is. He will then have an MRI to ascertain what is really going on.

 

So we sit and wait……. There seems to be an awful lot of waiting with a brain tumour. Long tortuous waiting.

 

Thank you all so much for your love and support.

 

Pam

x

 

 

 

Happy New Year everyone, (such a senseless little statement really)

My heart goes out to everyone on this train, what a burden we carry !

On a lighter note, I am delighted to say my son had the mother of hangovers New years day.He finished RT/Chemo on the 29th dec. First proper blow out since Oct. He starts further treatment in 4 weeks.

His partner miscarried their first baby on Christmas Day ( baby was concieved just days before he became ill) What a year for them, I'm beginning to think we may be cursed !

Still training for our sponsored hike in march. If I can figure out how to do it, I will post some photos

Best wishes to all

Anne x

Angela that was a beautiful letter and don't apologise for posting it here, it made as much sense to all of us as to those on the "light a candle" thread.

Naomi, there is no guidebook to grieving, I've met people through this website (different cancers etc) who have lost loved ones, one had a new partner before a year was up, another two who are still struggling almost three years down the line.  It is individual and NO ONE can tell you how or when it will cease to be so painful.  You have such a wealth of good memories of your Dad, all I can say is wrap yourself in them, let them protect you and make you feel his love.

Pete & Martyn, my love to you both still.

Anne, way to go on your son's hangover.  I am so sad to hear they have lost their baby too.  I don't believe in curses, but I know how you must be feeling  "why us", all I know is that fate can be bloody cruel!  Good luck with his upcoming treatment and love & strength to your sons girlfriend, she must be feeling very fragile right now (I know how I felt after my miscarriages).

Well I saw the new year in with a glass of cream soda.......and woke up with what felt like the mother of all hangovers.....who knew cream soda could do that!!!!!!  The headache knocked me for six all day and by last night I was a 'tad' worried but don't worry folks and start telling me to phone Kim/hospital cos its completely gone today!  

Oh something to make you smile, after all it made all my facebook & twitter fans laugh at me.  I had not done any laundry over Crimbo (first time ever, I just love my washing machine going in the background) and by New Years Day the basket was overflowing with the 5 of us home.  So I sorted out some towels and put them in the machine, went into the kitchen after it finished and there was a small pool of water and some bubbles in front.....oops must have overloaded it.  Put another load in and heard my husband shout "bloody hell not something else broken" ....... went out and there were bubbles everywhere (imagine cartoon scenes of soad suds coming out of the machine - just like that) they were even coming out of the soap powder tray.  I knew I had only put the same amount in as usual ....... remembered I had grabbed a small box of Daz just to top my box up to keep me going last time we went shopping, the box was still in the recycling bag ...... ermmmm word of caution to everyone, Daz box's ALL look the same but Twintub & Handwashing Powder does NOT do well in an Automatic Washing Machine.  

Took about 4 rinses to get rid of all the bubbles and more bloody towels to wash after I mopped up all the suds of the floor. All of this did not help my headache much either!  It was kinda phew moment when we realised what I had done (husband is getting used to these little mixups or Debisms as they are called round here) as our insurance company have informed us we are not getting any of the £398 of our vet claim back.  Our vet is furious and we dropped the letter in to them so they can send a letter of their own back.  Who knows, might work in our favour but we are going to look at it as a bonus if we do get some back now!  So we really didn't need a broken washing machine on top of that.

Just before I go, my kitchen floor is very sparkly now........just saying :)

Love & Strength to all who want or need it xxx

Good morning everyone Wishing everyone a healthy peaceful new year. Sorry for you all that have lost loved ones on this journey or have just started out on this journey too. I was scared of what this year may bring on new years eve and yesterday dad became very despondent took went to a&e where he had a seizure at 13.30 and has not woken up from it since. We were given the do not resuscitate talk. Doctors are confused he has no infection there isn't a growth in the tumour since the last scan no bleeding no swelling but are concerned. I'm so scared and trying to be strong for mum. I would send strength but I don't feel I have any to spare. Sorry I didn't know where else to let this all out.

Sorry to hear of your father, Laura.  As always, I wish for peace and comfort.

Well, this morning, I took down all of the Christmas cards.

And the sympathy cards, and the anniversary cards, and the birthday cards, and the get well soon cards.

The window sills look decidedly bare now and have immediately reminded me of the time that came before.

Laura,

So sorry to hear about your dad, I think we're all scared of  seisures you must be very worried.

How is he now? 

Do keep us up to date and tell your mum we're thinking of her.

Laura, I hope you find out what's causing Dad's seizures and that they can get a balance right with the medication to keep them under control.  Big hug for your Mum too.

Pete, the house always looks bare after Christmas but in your case even more so.  I hope you are looking after yourself and eating properly and all that ...... nag nag nag ........ but in a caring way not the way I nag my kids!

Love & strength to all who want or need it xxx

Well, my washing machine hasn't blown up yet...!!

I can't honestly say that I'm eating healthily, but I'll try and make more of an effort in the new year. Living by yourself tends to take away the motivation for proper cooking.