We Talk Brain Tumours

Merry christmas everyone.

Don't get chance to post much mainly due to the fact that our youngest daughter's lap top has broken.

Martyn I am sssooo sorry to hear your sad news about Doreen you have been an inspiration to me for a long time. Pete glad to hear your christmas was sprout free and no doubt filled with wonderful memories of Ali. Naomi Thinking of you too love.

Well our family had a different Christmas Eve, one I look back on now and actually smile. But not so good at the time. Chris was acting very strange and could not speak for over an hour. He had just got out of the bath and was only wearing his dressing gown..... He then had the full blown seizure. Paramedic and two fab ambulance men arrived. When Chris eventually started to come round (yes you guessed it ) the usual fight with the three men, me and our eldest daughter. Refusing oxygen but also refused underware (Yes I'm sure you can imagine the scene)

Eventually we managed to persuade chris to go to hospital and wear some pants ( especially as it is over a year since he has had any siezures). Local hospital fab but you know what it's like at 5.30pm Christmas eve when every one seems to have drunk the entire stock of christmas beer. And all seem to be needing attention at our hospital. so Chris Me our two daughters and son spent Christmas eve in a little cubicle until Chris was admitted about 9 30pm. He still couldn't speak properly.

Anyway came home on Christmas day, seems kidney infection triggered the seizures???????. waiting to have further scan at Leeds. Had fab christmas day but Chris and I fast asleep at 6pm but Hey ho! We were all together.

Pam sending a big hug ((((xx))))). Debs hope buttercup is behaving.

Love and peace to everyone xxxxxxxxxx Denise

Good morning my friends.

I hope the Christmas period was as kind to you and your loved ones as possible? I am still quite calm and collected, although in a slightly different dimension! Tomorrow will be the tester I think.. Again. I thank you all for your brilliant support. Love and good wishes. Martyn XXXX

Martyn just seen your news,  RIP Doreen.  Hope you are ok. Private PM if you feel like it.. Love

Afternoon all,

I had a fabulous Christmas Day at my little sisters.  My younger sister lives in the same street as me and Lara went with her to avoid sitting in our car for 1.5hrs with her older brothers!  I had cooked the roast beef (beast at over 2kgs of forerib) as my sister was not confident at doing so, don't know why, she is a fab cook.  Great dinner and then we started on the board games, I highly recommend Rapidough if there are enough of you to make up teams.  Laughed so much it hurt.  We also played logo and before we knew it, it was 8pm and we hadn't left the table!

As usual, Tony had told me NOT to buy presents (he does this every year and then surprises me!) so he had mentioned something about the LOTR boxset on BlueRay, so I had got that weeks ago and yes bang on cue, he produces a huge box containing a beautiful shiny new 22" LED Samsung monitor for my computer - it matches our tv which is on the wall a few feet away.  Bloomin 'eck its bright, my old monitor must have been very crap LOL  It seems so big & bright and once again he has done what he shouldn't have......spent money on me, it's not like we are rolling in it but I have to say I do love it really (he can't win) but it sure makes up for never getting a simple card!!!!  My little sister managed to get me a full bottle of my favourite perfume, which is no longer made.  That means I can start wearing my other bottle more often and not just for best :) I also got a new Kipling handbag from my middle sis Sharon :)) money from our parents, so can hit the sales at some point too!

The kids all did well and loved their presents and money, so all in all - A WONDERFUL CHRISTMAS!

Of course, now that Christmas is out of the way, that means my MRI is looming, yes its February but its only a matter of weeks away.  This means I will get progressively more snappy and grumpy and hard to live with.  Add this to three teenagers and I don't know how Tony manages to come home every night.

I take my hat off to all the family members and carers of BT warriors, we are not the easiest people to live with.  

Anyway, I wanted to wish everyone a Happy, Healthy & Safe New Year and throughout 2012.  To the newly bereaved, I hope you find a way to cope with your new life without your loved ones with you.  Be kind to yourselves.  To the people with brain tumours, lets hope we keep kicking its butt.

Love & Strength to all who want or need it.

Hi Debs.I hope youve managed to kick your tumours butt! Sending Good Wishes your way xxxxxxx

I hope everyone's had a good Christmas, have been thinking lots of Martyn, Pete and Naomi especially these last few days, as well as everyone else on here who has lost loved ones to this dreadful disease these past few months.

Just wanted to let you know my sister and her new husband raised around £1500 for Brain Tumour Research at their fabulous wedding a couple of weeks ago. They asked for donations in lieu of gifts, and although some people still felt the need to buy them gift vouchers (instead of giving something to the charity they wanted them to donate to!), I think they did a good job :-)))

My dad did really well. He walked Bev down the aisle (and down lots of steps!) and then gave a great speech, which got him a very very big round of applause. He had practised his speech every day for a month and got it down from around 18 minutes to 10 (his reading/speech skills have been affected by his treatment and aren't great), so we couldn't have been any prouder of him, what a hero!

Debs, I'm sure your scan will be absolutely fine - you are someone who goes against ALL the rules, so try not to worry, though I know it's easier said than done. Dad has his scan tomorrow, and results next week, so hopefully all is well.

Love to everyone, stay strong.

Debbie xxxx

Hi Guys

I hope everybody had a wonderful Christmas. Despite the challenges we face constantly with Tony's behavioural changes, we did actually manage a lovely Christmas Day and we only had one 15 minute tantrum about something and nothing which I can't even remember. I have to say though, that the pressure to get it right was massive so consequently there was much relief when it was all over.

Unfortunately, almost one minute past midnight Tony's behaviour became extremely erratic culminating in plate throwing (at our daughter) and hysteria by about 3 a.m. He calmed down eventually when we gave him a Twix (I kid you not!) and I decided that enough was enough and called the Community Nurse to ask for help.

The Christmas period is not a good time to need support so it's been a bit all over the place trying to get the right people to see him. It was eventually decided that an out of hours GP should pop in which he did and immediately decided that he should be admitted to hospital. By the time the GP was there his confusion had become extreme and he didn't know whether he was upstairs or downstairs. He was also sweating profusely and complaining of pain behind his left eye so it was agreed that hospital would be the best place.

However, as soon as he got into hospital everything changed. He was calm, the confusion went, we were having normal every day conversations and his temperature was normal. So, of course, the Medical Assessment Team were scratching their collective heads wondering why on earth he had been admitted and I was looking a little like an over sensitive protective mother! 

They wanted to send him home last night but I'm having a few medical issues of my own and explained I wasn't well enough for him to come home so they agreed to keep him for one extra night. Much to my relief. Despite the seemingly unnecessary hospital stay it has got things moving with the palliative care team and I believe the hospital (Portsmouth QA) are sending their people to talk to Tony this morning. His Clinical Nurse Specialist at The Marsden has referred him to a local hospice team in Southampton so, not knowing how these things work, I am assuming I will be contacted by one of their team soon (I hope).

I am just keeping my fingers crossed that the calmness continues once he returns home later today - as many of you know from my posts Tony's behaviour has been extremely challenging for quite some time and it is exhausting to have to deal with it on a daily basis now. He is saying and doing some awful things and, despite the mantra 'it's not him it's the illness' it can be pretty hard not to react to some of the things he says. Especially when he's shouting at his poor frail 89 year old father. 

There are moments of pure comedy at times though. During one early morning rant about how we are all trying to control him, he shouted 'You're even trying to tell me what I can and can't say. I'm not even allowed to humiliate you in public now without your permission'. My how we laughed!

Our son Charlie is bringing his current love interest home for the first time for New Year's Day. I hope she's good at ducking plates! I'm off to stock up on Twix!

With much love to all. Wishing you peace whatever stage of this journey you find yourself at.

Pam

x

Aww Pam I do hope you get the help you need.Hope the twixes help again,lol.HUGS xxxxx

Debbie, your father looked fabulous at the wedding, very swish indeed!  Way to go to your family on the fundraising.  Good luck for your Dad's scan, I know I shouldn't worry, I mean it won't change anything but we all know what strange and cruel beasts they BT's are and although I feel fine, that's not a very accurate medical definition of what's going on inside my noggin!

Pam, goodness me you must have the patience of a saint.  I did smile at the not allowing him to humiliate you in public, sounds like my kids talking to me!  I hope you get the help you need and that Tony settles down (my husband is called Tony too).

Sending out much love to passengers who are now travelling alone with us, I hope we bring you a little morsel of comfort as you begin a new journey.

I can smell my tandoori chicken cooking, along with my version of bombay potatoes (more like Indian roast potatoes but my family love 'em).

Keep well and safe my friends.  Love & Strength to all who want or need it xxx