Happy New Year and.....THINKSHRINK!

Hi folks

This is by no means a cop out but I've had a buzzy treatment today, come back and slept for 4 hours. We're just off out to our friend Philips' for New Year so not much has changed. I do know that I never wanted to wish away time and I truly don't. We are looking forward to starting fresh tomorrow morning with 2008 and as many positives as we can. I was thinking of 2007 and the first thing that comes to my mind are when Jeanette and I got engaged, living in our lovely, lovely home in Annecy in the summer, seeing Genesis in concert in Lyon, skiing in Zermatt on holiday, staying at the Chateau du Berne in Provence, going to the Monaco Test with my Dad, seeing my nephews playing at their new house in Poole, learning how to sail in Greece with Jeanette and all the dinner parties with our friends. It was a brilliant, brilliant year. I've never wanted to wish away a year and say that I can't wait for the next one to come and WON'T DO THAT TONIGHT.

I very much wish that we can spend some of our coming happy times this coming year with YOU. I very much do.

I wish you everything you hope for this coming year.

Happy New Year

Love

Ali

Sunday Morning

Good morning everyone. Thanks for joining us today. Yesterday was a lovely day, we went down to Jeanette's parents in Tunbridge Wells and had a lovely lunch at the Mark Cross Inn. Mmm, scrummy. After that we went back to Jeanette's parents' for my afternoon 3 hour sleep, then up and home. It was great although these problems are starting to wear me down a bit.

I couldn't see so good all day. I've got double vision now. The mettalic taste in my mouth just won't go. I'm dehydrated. I'm knackered. I can't be bothered to do things around the house. I would have been the first to do things but now I really have to slow down way beyond where I want to. So I had a bit of a moment in the car (tears) and kindly Jeanette brought me back round. She is my rock and my love. I don't know what I'd do without her, I really don't.

We also read peoples' comments once we got home and that makes a huge difference to the way we feel. This positive attitude from everyone is really helping. I sat in the bath last night wondering why we can't have an engagement party like everyone else, why we can't go back to France and live normal lives. I just want to ski again, bring the wood in and be like I was.

Rant over, new day tomorrow. I love the 'ThinkShrink!' attack on my tumor. It really, really is helping. Messages and ThinkShrink....lets go


Love

Ali

Saturday Morning

Hey folks, thanks for joining the blog. I've got a treat for you this morning in terms of a scan of my brain so you can actually see the tumor! So, looking at the piccie, the whitish.greyish circle in the centre is my brain stem. It should be all white but it's not because the tumor is there. The darkish patches are where the die that the thry injected shows up the tumor. It's a really awkward place which is a shame. They can't operate because the Brain Stem is such a delicate place. So, really, what we have to do is hope that the Radiotherapy shrinks the tumor. Every time I go and lie under the machine I just imagine the rays shrinking it. I need you to do the same. Please!

So, every day I just want you to imagine that tumor shrinking. Please do. It will really help me!

The lovely piccie underneath is of Amanda my brilliant doctor and Alison my fantastic and all caring nurse. Please forgive Alisons hair, she didn't have time to do it!

Massive thanks for my brother taking me up and asking questions and giving me the support that I need for him. I really do have a great team around me. Thanks Si.

Love
Ali

Thursday Evening

Hi everyone,

Not much to report I'm afraid other than my lovely Sister in Law took me up for treatment, we managed to grab a quick soup from Hampstead then rushed down the hospital to wait for 40 mins for treatment. It's really nice in the waiting room to hear how many treatments people have left and how happy they are when they go. I don't mind it, although I'd prefer to be in France and my countdown or treatment is zero.

Quick zapping, home and I managed, for the first time to get on my bike and do 10 mins. I was so happy that I've had a photo taken beside my bike with Jo. I'm going to do the Time Megeve Mont Blanc next June. My good friends John, Dougie and Giles are going to come round with me and keep me on the straight and narrow. Last yeat it took me 5.5 hours. I've done 10 mins training. Bring it on!

Have any of you seen the counter at the bottom of this page?

Love to you all

Ali

Boxing day eveninig

Happy Boxing day to you all.! We're feeling a little bit under the pressure now because Simon and I worked out how to put a counter on the blog and we were blown away by how many hits we've been having. It's really very humbling that you all log in and see how we're getting on.
How do we feel today? Brilliant! Jeanette came and stayed last night after Christmas with her family so we sort of had a full Rainback house...brilliant.
I still wake up drenched in sweat but that's the pills. My balance is surprisingly good and all that leaves me is my fitness which I'm ready to start getting back.
Jeanette and I had a very good friend come and see us today, Mark Birch. He's a good skier and is training with New Generation this winter. I'm so excited for him that I really want to get back out to the Alps and help with training (it's my job!)
So, with regards Mr Buzzymachine my sister in Law Jo, is taking me tomorrow for my zapping. Because she's a nurse she will help by asking questions . I can't wait because every treatment is one step closer to getting better. I asked the radiographers to tell me the exact time that I'm being zapped and now, for that 10 second blast either side, I can hear it and imagine it shrinking my tumor. It's working, I know it is. It has to. It will. Come and help me by imagining that it's working because it helps so much.
One final thing, the added picture is when we went heliskiing with the New Generation in Italy a couple of seasons ago. Times were carefree then. I'd just hopped out of the chopper with a few of the lads and snapped this photo of the next chopper coming in. Really exciting. I hope to be back there again soon.
A friend wrote to me early on...."sometimes I find it is when you are at your weakest, that you can be at your strongest"
Love to you all

Ali

ps. Best thing that happened to me today..... Seeing my nephew Charlie dressed up in his fireman's outfit (the one a bought him for Christmas!) He loves it.

What's yours?

Happy Christmas to all of you!!

What an awesome day. I haven't been home at Christmas for 16 years and it was cracking. I woke up to Charlie and Archie opening their pressies, then mum and I zoomed off to church to go and see a few people. Came back and ate for England, oh yes, England! Then I had a 3 hour sleep, woke up and here we are!

Now, I promised you WIG WATCH.

We're all bald in this house so it was a relief for all of us (apart from mum) to finally have some hair. These are a selection of 'attic wigs' that mum dug out but feel free to send any to us! Just post a comment and I'll wear what you want. Can't wait to show the girls in Hospital on Thusday!

Finally my good friend Martin in Villaroger managed to do a special youtube Christmas message to us here. All you have to do is go to youtube and type in ali rainback.

Have a super, super Christmas and speak tomorrow.

Love

Ali

Home at last!

I'm home, home, home and so happy about it. I feel really good, actually better than since I had the Brain Biopsy over a month ago. I can run up the stairs and I'm back to my usual weight!

I'm on 16 miligram of steriods but I guess that will come down soon. I aim to sleep, eat and chill over the next couple of days to prepare for the Buzzymachine again to help fight it and make sure every treatment does it's best for us. Oh, I've got Tamazapan and Liozapam which should help me sleep!

My mum gave me a quote when I went travelling on 28th June 1998. I use it every day and it's made a big difference to my life and the way I approach people. See what you think...

'I shall pass through this world but once. If, therefore there can be any kindness I can show, or any good thing I can do, let me do it now, let me not defer it or neglect it for I shall not pass this way again.'

Happy Christmas and see you soon

Love

Ali

Christmas Eve Pressie.....Freedom!!! Yippee!!

Hello, hello , hello! I'm still in Hampstead under the shadow of the hospital but I've been set free!! I'm so happy, really, really happy. It's funny how these things mean more in different circumstances, Anyway, I'll update the photos this afternoon so you won;t get too bored!

Seems like the swelling went down enough for them to zap me again which they did. No problem there, We're just waiting for my drug basket to go home with but it seems like the whole hospital is being discharged today so we have to wait our turn. I do have to pay massive respect and love to my mum and dad who have been coming up and down to the hospital tirelessly to look after me and bring fresh pyjamas! Thanks guys I'll do my best to repay you in love when I can.

I had another though for blog games. Guess the hospital dinner from the photo...coming this evening.

Everything is fine at our end. It couldn't be better for the moment. Thank you so much for your blog comments they really give ALL OF US strength, happiness and laughs. If you don't know what to write then a joke or poem or just your name is brilliant.

Finally it's 14.00 in the afternoon and I believe I've already had my best bit of the day. My old friend Graham came round to visit and brought me a pressie. He gave me a compass to make sure I don't get lost again like i did on friday. That made me cry.

Love to you all and happy christmas

love

Ali

I'm back again sorry for the delay....!

Hi folks

I've had some thoughts in hospital about sprucing up the blog....


1. Wig watch. My hair is going so I'm going to choose a wig from three then post the photos on the blog and you can CHOOSE.

2. The best thing that happened to me today. I've started already have you?

I've been itching to get back to you! Hello I;m still here and I've missed you all terribly.

Today is one month since I was diagnosed with a brain tumor. We didn't realise the gravity of the situation immediately. Now we do. Yesterday was a big turning point for me. I don't know why maybe one day I'll fine out. Friday night I thought I was going to die. I really did. I wasn;t gravely ill, I was just ready to go. NEVER AGAIN.

I woke up on Saturday morning and saw the sun coming up and thought 'I'm not allows to choose'

So I got up and saw a lovely family that came to visit me with renewed vigor.

No-one thinks I'm going to die so why should i?

I had a wet shave (which is very unusual for me) and decided that everything I do I'll do it better. I'll do it with so much vigor and energy that this tumor can't stop us.

I'm unstoppable.

No more talk of death and no more thoughts of death.

Friday Evening

Hi everyone, as you might know Ali is currently back in Hospital following a worrying few days. He is starting to feel better now and he wanted us to update the blog with whats been happening so here goes.........

Thursday morning Ali woke with a serious headache and more vomiting so following a number of phone calls we were instructed to bring him straight to A&E. After a large dose of Morphine he was finally able to lose the headache and was then taken for an MRI scan. They started some infusions, one to re hydrated him and one to help reduce the pressure build up inside his brain. Thankfully this seems to be helping and although the headaches still come and go they are more tolerable.

Ali is very sleepy and tired so will be staying in hospital for a few more days so they can closely monitor him and we are hopeful that he will be at home for Christmas.

He sends his love and a huge thank you for all your messages and is really looking forward to reading them all and posting again soon. Please do keep blogging! Your comments are helping him through this incredibly tough time.

With our love
Si and Jo x

Wednesday evening

Hi folks. Just a quick post tonight because I'm a bit under the weather. Been sick all day and now they want me in for an MRI Scan tomorrow. I guess it's to check that I'm OK.

Fat Nick kindly took me in and out today and looked after me because I was a bit dizzy and jumpy. Thanks Nick - you were a star today, you really were. I know what you're going to say "We roll like this Ali" ha ha.

That was it, I got home and went to bed, woke up and wrote this. I've got lots of nice exciting things to write about the MRI so please come back and read tomorrow and leave a lovely message for us....please do.

Love to you

Ali

Hi guys! Was sick again this morning and in fact it was a good thing (to me) because I'd only had my pills a few mins before so they came up with everything else. I know I need them but they make me jumpy and jittery so I felt almost back to normal again his morning. At the moment I'm on 19 pills a day which is more than I'd like. Maybe for Christmas they'll bring them down a bit.

Anyway, Top man Keith at the hospital gave me a free massage and I'm entitled to one every day just because it's there! Awesome. I'm already booked in tomorrow (don't tell Fat Nick!)

Had the Buzzymachine treatment then went to see the consultant, Dr Wilson. Her and Alison are very nice indeed, answered all of our questions then that was it - off to home. I'm just about to hop into bed and have a snooze. Nighty nighty you lot.

Love

Ali

ps. Well over 100 postings from you all. Thanks so much, it really keeps us all going. Thanks.

A

Monday Evening 17th December

Good evening to you all! Thanks for logging in and checking what's happening. I'm really sorry that I seem like a stuck record but I guess thats what this is all about Oh, this morning Jeanette and I went to see the speech and language therapist to make sure I'm not having too many probs with my swallowing. She gave me a biscuit and felt my throat, no problems there. I nearly had her fingers off. Saw Alison and everything seems fine, had my blasting then off home. I'm going to see the councillor tomorrow because I've got a couple of questions that I want to ask...... I really don't understand why I'm not angry about it all. I'm not scared of dying as long as it doesn't take long. At least I don't think so. I've had a good think about it but I think that now is the time to ask about all this.

Don't worry, I'm still here! I had to write it in because that's whats's happening right now.


Oh! We had a lovely lunch at Mum and Dad Hallers yesterady. ROAST BEEFwith all the trimmings. It did my waistline no end of good(?!)

Love to you all

Ali

Friday evening - no blasting 'till monday yippee!!

Hey everyone. It's so good of you to log in and keep up to date with what's happening in frazzle land! Mum and Dad took me in today which was LOVELY thanks so much guys...photo to come I promise!

Dinga met us at the hospital which was great, zapping was really quick, maybe ten mins at most then off for LUNCH ha ha. Actually thanks for all your comments about the weight but I hope to get out walking tomorrow and work some of it off.

How do I feel? Well, It's all a bit weird. I don't feel angry. I wish it wasn't happening. I wish I was in France with everyone and working hard and skiing because the snow looks awesome! I wish - but when you do they don't normally come true.

I know everything will be fine.

Oh, I wish that Veyron was mine and yes, orange is GOOD!

Love to you all speak tomorrow

Ali

Thursday evening

Hello everyone. Well I didn't feel too good yesterday and I was sick on the way into the hospital. Nick and Dicky kindly escorted me in (well done on the quick dodge up the kerb Nick!) Treatment was fine although my head feels shrivelled and very sensitive now but I guess it would. Lisa popped in to say hello which was lovely. What else is super is that Jeanette and Martin were here when I got back from the hospital! No end of thanks to Martin for making the trip from France. I'm also having a bit of a problem swallowing fluid so I'm off to the speech therapist very soon at the Royal Free. So, not too much to report because yesteday was a write off. I had to sleep when I got home and did so for 3 hours! I felt a wee bit better after Jeanette spent about an hour trying to wake me up then off to Lower Farm for a lovely dinner with Phil, Diana, Tim, Dino, Ellie, Martin and the lovely Jeanette! Slept really well!

This morning my friend Paul kindly took me in, I think it was the fastest treatment to date. I was on the table for no more than 10 mins...awesome! Thanks to radiologists Brett and Kartrina for your expert and swift help! My friend Birchy came and said hello, we had a super lunch oh, and Jeanette spent a fortune on all sorts of natural concoctions in Holland and Barrett! Going to sleep really well again I hope...

Love

Wednesday Morning

Morning everyone! I had to tell you that last night was the first night I've slept through without waking up at all and without nightmares...yippee!

I didn't tell you about the nightmares. I've been told that the steroids do a great job of making you very jumpy but also give you nightmares. Last week I had the worst nightmare of my life, was awake for two hours and ended up sleeping in the bed with mum! Maybe I shouldn't post that.

I weight 13 (normally 12!) BUT I din't have a nightmare or wake up in the night...life is defo good!

My taxi today is Fat Nick and Dicky Marshall. Jeanette and Martin arrive today as well...yippee!

A good day I hope...

Hey folks! Woke up at Pats in Hyde Park Square after an Iranian dinner just down the road. We went to see Tony Blair's new house after dinner and I think we upset the armed policemen because we just walked by , turned and walked past them again! We certainly don't pose any threat, well I couldn't because I'm so dizzy!

Today was another mapping day and Brett was leading the pack so it didn't take as long as yesterday - whew! 4 down and now 26 to go.

Afterward we had a meeting with the Consultant Oncologist, Mrs Wilson. Phil and Si came as well and asked questions. All good because we MIGHT be able to bring down the steroids to eventually nothing. Yippee!

I'm feeling okay, but very dizzy now, still Mr Bump, Mr forgetful (sorry about the keys in Meribel Phil!) and Mr Clumsy.

Thanks so much to Phil and Diana for taking me up yesterday and for Phil taking me today and for Si coming and having a look at the Buzzymachine and asking the doc questions.

Love

Ali

Hello! I'm back from the 3rd blasting and my head feels frazzled again. They took a bit of time as this session was a mapping one and they wanted to get it just right. So nearly half an hour in the mask and it was enough to start making me feel claustraphobic. You can't do anything really with your face, you can hardly open your eyes, just open your mouth and certainly not move. Good job I suppose really!

So, 26 days to go and Mr Tumor will have shrunk so that he doesn't bother me any more.

Speak tomorrow

love

Ali

Sunday Evening

Hello everyone. It's Sunday evening and I'm ready for blasting tomorrow. Bit dizzy today and I'm starting to bump into things and knock things over (sorry about the milk, vase and the other vase Mum and dad!) Si and Jo, Charlie and Archice came to visit...yippee! Went for a slow walk with Jo then ate loads of nuts in the Bull in Wheathampstead. You'll all be amused to know that the steroids (to take down the inflamation in my brain) are making me eat like there is no tomorrow. I have a capacity to eat more food than you can imagine. I challenge anyone to a 'How much food can you eat' competition! The flip side is that I've put on a STONE since I left hospital which was only 2 weeks ago!!. I've been told it keeps going that way until I stop the steroids (3 months....damn!) I've got my turbo trainer and I don't think I can crash that yet so I'm going to have to put a few hours on that (with food breaks...doh!)
I'm so happy that you are reading my blog and now know what's going on. checking comments is the highlight of my day. Apart from speaking to Jeanette of course.

Love to you all

Ali

We are just blown away by the comments that people have posted. Thank you so much and it's great to hear from people that I've not heard from for years. Billy and Jo and Noah, Jez (send me some Electric Jellyfish and I'll add it mate!), thanks Darren (you must be busy so thanks for the time to write and I look forward to meeting Lola) and Janey for the rhymes - keep em coming! Ooh and finally thanks so much Jacquie I think I'll call it the BUZZYMACHINE.

Day 2

Hey there! Today was excellent and easy! I got a lift in with my good friend Julia which I'm sure gave dad a bit of a break. We had an early slot at 10.15 but the machine needed fixing so we hung around for a few minutes. Julia came in and watched as they lined me up again and she kindly acted as official photographer and took a photo of me with my mask on. I'll post that up later so you can see what it looks like.

Everyone out for the treatment. 10.5 mins later we're in the car and heading home!

Lucinda did Bangers and Mash which was awesome, then we went for a lovely walk, back, write this then home to bed.

My head feels numb and frazzled but we're now two days in to getting better which is awesome. 28 days of treatment to go then we're home and dry!

Love

Ali

Please forgive the HUGE picture above. This was kindly taken by my great friend Matt Cooke. I think he should take all the credit for sitting in deep snow waiting for me to get it right!

Thanks Cookie - The Greatest New Gen photographer there is!

Hi folks!

Well, it wasn't too bad at all. I've got a headache just now but I guess I would have after a jolly good zapping! They spent some more time getting lined up and then they all left the room. 'My friend the machine' started buzzing, moved, buzzed, moved and buzzed some more. That was it. Back in the car and home. I got back, lay on my bed and listened to Every Second Counts by Lance Armstrong. I'm going to have to go back and listen again because I fell asleep after a couple of mins. No nightmares though....phew!
My head is hurting and my skin feels weird but it's great to get on the road to recovery.
A Massive thanks to everyone for your kind messages of support, all the texts and post, calls and visits. I really appreciate it - keep it coming, it keeps me very positive./

Love

Ali

Well, today was easy by all accounts! I'm feeling so much better anyway which is good. I can wear my contact lenses and I'm not as dizzy by far and I can run up the stairs! So, at the hospital I met the team that would be doing all the zapping. I had to lie on a table and fit into my mask (which is attached to the table under the machine) They measured me up with lasers so that the machine would get the right bits when it actually starts radiotherapy for real tomorrow. I'm a bit nervous but I'm taking it that I'm on a journey to getting better and I simply have to do this. When I first saw the machine I really was scared but I've decided that he is my friend and he is going to help me! So, I'm allowed to take a cd in a listen to music when I'm getting zapped. I'm the only one listening to it so I can really not mind what is on it. The cd is called ' The machine is my friend' and it starts with Dreadlock Holiday by 10cc. I've been told my hair will fall out in places so one day me and Jeanette will go for dreadlocks and it will be on holiday! I start tomorrow.....!

Love

Ali

Grade 2 Glioma of the Brain Stem

Right, I'd better explain more about what's going on. Since June this year I was feeling tired and just generally worn out. 3 trips to the doctors and a couple of blood tests later they still weren't sure what the problem was. Finally I got double vision whislt driving back to Geneva from Annecy so I went back to the Royal Free and saw a super doctor called Gerard Davies. He booked me in for a brain scan and sure enough they found some problems. A week later I had a brain biopsy. I had to wait another week for the results which I did and it turns out I have a tumor in my brain stem. It's a Grade 2 Glioma. More on that later, gotta dash for this planning meeting.....bye!

love

Ali

I'm new to this....!

Bonjour everyone!! I didn't ever think I'd be here but none of us do I guess. Not to worry, it's my turn and by jolly I'm going to give it back everything! I'm writing this on the first day of my treatment. Actually, I'm going for a planning meeting with the Radiotherapy dept. at the Royal Free. I've already had my mask made (I'll tell you about that later) and I guess I'm just going to be lined up for zapping. They have to get it right because I don't want to lose an ear or something!

Right, I'll do my best to keep you all informed of whats going on. Messages of support are very, very welcome. I take a lot of strength from hearing from all of you lovely people. Keep 'em coming!

Love

Ali