WE'RE UP AND RUNNING AGAIN!

Dear Friends

As you can imagine the last seven weeks have been very tough both mentally and emotionally and doing Ali’s blog proved to be just too much. As it was such a marvellous vehicle for everyone and new friendships were made and many old ones renewed, we felt we must keep it going as a valuable way of keeping in touch with you all. So here we are!

We have been working hard behind the scenes, though, and as you can see the money’s rolling in: www.justgiving.com/alirainback which is such a wonderful tribute to Ali. Thank you for being so generous in your giving and let’s exceed our target and ‘keep on keeping on’ for such a worthy cause.

We intend to create a Charity to enable us to get some serious corporate sponsorship and help with publicity, which we will let you know about as soon as it's set up. We want to use ‘Ali was a STAR’ as our theme and will need a logo incorporating a star and which epitomises Ali and all he meant, so any ideas would be most welcome. Are there any graphic designers out there who’d be willing to help design tee-shirts, posters etc?

We have many events in the pipeline and will publish details in due course but in the meantime please note:

Ski for a STAR: Courchevel 10th April 2009

Kimpton to Courchevel Cycle Challenge: 6-13th June 2009

Watch this space for further information and send any suggestions to: dianarainback@aol.com but please share your ideas with us on the blog and let us know about anything you’re planning so we can support you.

With Love

Team Rainback

ps We would still love any photos and memories of Ali that you may have and thank those of you who so kindly sent them-they mean a great deal to us.

Friday 4th July 2008 - An Amazing Day.

Dear Friends

Friday 4th July will long be remembered for the very special send off for a very special man - our beloved Ali.

The sun shone, the Churchyard sparkled, friends met, smiles exchanged, memories shared, the Church packed, the flowers beautiful, the music wonderful, the words powerful, the tears flowed, the singing emotional, the laughter spontaneous, the tributes moving, the love palpable, the VW camper van raised applause, the village gridlocked, the pubs busy, the wine flowed, the mountains of sandwiches and cakes eaten, the memories happy, the loss irreparable.

God Bless you Ali-we love you so much and you'll live in our hearts for ever. Sleep tight Darling. xxx

Order of Service http://www.skinewgen.com/Alistair%20Rainback%20Order%20of%20Service%20v2.pdf

Thank you to everyone who was able to join us and for the best wishes from all of you who were thinking of us elsewhere, you lifted our spirits and helped us through a difficult day. It was wonderful to see so many old friends, to meet new ones and thanks for the photos and stories about Ali you shared with us.

As a family we have been touched by all the love and support that’s been shown and for the hundreds of letters, cards, emails, texts, phone calls and visits and we do hope that will continue. Ali’s blog has drawn people together, reunited old friends and inspired many and we thank you for the wonderful comments and are proud that others too recognised his worth and loved him as we did.

Ali was a true STAR and in order to keep his memory alive we are planning some big fund raising events for 2009. Please watch out for information about ‘Ski for a STAR’ and ‘Cycle for a STAR’ which we hope will be challenging, memorable and FUN in true Ali Rainback style!!

Many of you promised to raise money in Ali’s name and we do hope that you’ll post your ideas and dates on the Blog so we can support your efforts great or small. Let’s try to keep those promises and raise as much as possible to enable us to help others through tough times as Ali would have done. We would love to keep in touch so please send your contact details to:

Alistair.rainback@skinewgen.com

With happy memories, heartfelt thanks, hope for the future and all our love

Diana, Ian, Simon, Jo, Jeanette, Charlie and Archie xxxxxx

Dear Friends,

For those of you in the Alps who can't make it to the UK on Friday, there will be a gathering to remember and celebrate Ali's life at La Boulotte (ex-Maracas), in Courchevel 1650 at 15.45 on Friday 4th July.

With love,

Team Rainback x

TOTAL CARE WHEN TIME IS PRECIOUS

Dear Friends

How that statement resonates with me!

Ali and Team Rainback certainly had that in abundance!

We were so lucky that Dr Ros Taylor was able to provide a bed for Ali in Hospice of St Francis when he needed it and enabled him to stay in that safe and comfortable environment for 7 weeks until the end of his life.

Not everyone is as fortunate as beds are not always available, and there is a shortage anyway, and that cannot be right. We should all be allowed access to a Hospice whether for pain relief, symptom control and respite care or to allow us to end our days with grace and dignity in a peaceful place.

Those of you who were able to visit HOSF will know what a special place it is. The beautiful buildings set in lovely gardens, the dedicated professionals giving such wonderful palliative treatment, the loving care from the nursing staff and the marvellous food from the chef all backed up by a huge number of volunteers all help to provide a calm sanctuary.

The Hospice of St Francis is an independent charity that provides free, specialist and professional support and care for people with terminal illness but will receive only 22 per cent of their running costs (£3.5 million) from the NHS leaving a massive amount to be raised annually.

We owe such a debt of gratitude to everyone at HOSF for everything so freely given that we have made the commitment to raise £100,000 in Ali’s name to open another bed.

To achieve that target we need you to give generously and fund raise energetically so that others too may benefit at a time when they most need it.

We thank you and hope that you will do all in your power to spread the word about the wonderful holistic care given in Hospices and in particular The Hospice of St Francis, Berkhamsted, Hertfordshire.

On line giving: http://www.justgiving.com/alirainback

Or please send donations to:

Hospice of St Francis
Spring Garden Lane
off Shootersway
Northchurch
Berkhamsted
Herts HP4 3GW and write Ali Rainback Fund on the back of the cheque

Thank you

Love

Team Rainback

Wednesday Evening

Dear Friends

The Funeral Service for Ali will take place in the Parish Church of St Peter and St Paul in Kimpton Hertfordshire, SG4 8RR, on Friday 4th July at 2.45pm and afterwards at Kimpton Memorial Hall, SG4 8RD.

Family flowers only but donations gladly accepted for Hospice of St Francis. Details for online giving to follow shortly.

Dress code is no black tie.

All are welcome.

Love

Team Rainback

Tuesday

Dear Friends,

How can we honour our wonderful Ali? How can we know him better?

His passion for life, adventure and ability to touch everyone around him has given us so many precious moments.

We all have a special time that we hold close to our hearts, a tale to tell that we will recall to him with tears and laughter next time we meet.

We would love to share those treasured memories of Ali, your ‘standing on London Bridge in your boxer shorts’ moments! Please print and send us that photo with a short explanation so that we can create a memory board for us all to enjoy.

Love

Jo and Team Rainback

Please send by 2 July to:

Team Rainback
c/o The Post Office
5 Station Road
Wheathampstead
Herts AL4 8BU

Monday

Dear Friends

It is with great sadness that we have to tell you that Ali passed away last night on Sunday 22 June at 10.35pm

It was very calm and peaceful and those of us who loved him so dearly were by his side constantly and supported him to the end as he would have wished.

We now have to make all the necessary arrangements and will announce our plans as soon as we can.

Sleep tight Ali and God Bless.

With Lots of Love
Diana, Ian, Simon, Jo and Jeanette – Team Rainback.xx

Saturday Morning

Dear Friends

Our apologies for not keeping you up to date but this has been a very difficult week for us.

Ali’s condition is rapidly deteriorating and on Wednesday a review was held with the whole medical team to consider the next stage. As usual everything was fully explained with the principle being to control pain and agitation caused by the disease and to that end he is now on continuous medication which is keeping him calm and comfortable.

We thank you for keeping him in your thoughts and prayers and ask that you continue to do so please.

With Lots of Love

Team Rainback xx

Monday Evening

Dear Friends

For some time now I have been typing Ali’s words as he found it increasingly difficult to see the keyboard and so asked me to do it for him. His concentration is limited but I read the comments to him and as he gets so much enjoyment from the anecdotes and especially the jokes please do keep them coming as he certainly hasn’t lost his sense of humour!

Those of you who have seen him recently know how poorly he is and that he is unable to do many things for himself now but he is being tenderly looked after by dedicated professionals in this wonderful place which is such a blessing. He is very tired, sleeping more each day and having continuous medication via a patch to keep his headaches under control so he is pain free, calm and very happy for which we are so thankful.

We have been in the Hospice of St Francis now for six weeks and cannot speak too highly of the loving care we are all receiving from everyone here. We will remember this forever as a very precious time in our lives and be eternally grateful that such a beautiful place and such special people are here to help us now and in the Future and we thank them all from the bottom of our hearts.

Please continue to keep Ali in your thoughts and prayers.

Lots of Love

Diana and Team Rainback xx

wednesday evening

Bonjour everyone

I had a rotten day yesterday because of a bad headache but felt much better after the morphine! Simon came in the evening and we had a laugh which was great.

Today Jet and I had a quiet morning together and then I slept all afternoon. Si and Tom came to see me this evening for a glass of wine with Mum and Dad and to eat my chocolate! Thanks guys!

More morphine so night night.

Lots of Love

Ali x

Monday Evening

Bonjour Everyone

Well done Lezza and thanks for doing the triathlon and raising so much for HOSF- hope you're feeling ok.

Yesterday Trish took me outside in my Naked Chariot (easier than Chorlton) and I spent 2 hours on the patio in the sun.

Watched the Grand Prix with Mum, Dad and Jeanette and a glass of white Paal-wicked! Sorry about the race Lewis -good luck in France-you'll need it!

Today had visits from Luce and Dinga -but sorry I was too sleepy to see Auntie Marg and Uncle Peter but thanks for coming.

I've been skooshing with Elsie today too but that's our secret isn't it Nan?

Must tuck down now.

Lots of Love

Ali x

Saturday Evening

Bonjour Everyone

I've been very tired but today I felt I could walk when I woke up. It must have been the chats we've had Ros thanks a lot you're a superstar!

I have been better but I do feel so tired now and just want to sleep. Haven't been out in Chorlton for a while as I feel safer in bed.

Good to see you Nick and Tony and thanks for the jelly supply-the chef will be pleased!

Lezza -I do miss you-hope the triathlon went well and you raised loads of money for HOSF-big hugs and thanks.

Lots of Love

Ali x

Wednesday Morning

Bonjour Everyone

Sorry I feel a bit shite today and very fidgety (and it's only 7.15) but it's gonna stop raining soon.


Thanks for the lovely chocolate cake Auntie Liz-um nice!


Lucy who gave me a massage last night is related to my friend Ch...der Waller who came to see me last week.

Thanks for cutting my hair Si all the girls like it it!

Lots of Love

Ali x

Saturday

Bonjour Everyone

Great to see Ewan again yesterday especially as he was loaded with 4 bottles of wine and a corkscrew and have a good chat. Thanks for the Paal and Gigondas Ewan and thanks for the Barolo Dicky M. We had a glass (well 2 little ones) before lunch of the red Paal-magic-defo our favourite.

My good friend Rachel came this morning-Happy Birthday Rach-and Simon spent the day with me so I'm really happy.

Thanks everyone who's sent flowers or yummy parcels we will try and write soon.

Lots of Love

Ali x

Thursday Evening

Bonjour Everyone

It was a great sunny morning so we were out before breakfast inspecting our mighty oak after the storms and later Liz (the Chaplain) blessed the tree for us:

I think I shall never see a poem lovely as a tree,
A tree whose thirsty mouth is pressed against the earth's sweet flowering breast;
A tree that looks at God all day, and lifts her leafy arms to pray;
A tree that may in summer wear a nest of robins in her hair;
Upon whose bosom snow has lain; who intimately lives with rain.
Poems are made by fools like me, but only God can make a tree.

Sow sparingly, and you will reap sparingly;
Sow bountifully and you will reap bountifully.
Go and sow love and peace and you will reap love and peace in abundance.

Thanks for that Liz.

Yesterday good to see John T who came from Vallandry, Tom from Liverpool and Sean from Scotland but sorry I fell asleep before Si came. See you again on Saturday Si.

Having reflexology soon so Good night sleep tight and don't let the bed bugs bite!

Lots of love

Ali x

Wednesday morning

Bonjour Everyone

I'm still in bed I'm not bored neither is Mum and we're happy writing the blog. Dad's just arrived for breakfast and he's really happy to talk about planes and cars.

Julia came yesterday I was disappointed that she didn't bring any chocolate but the twiglets and juice were ok!! What about the sport gums?

Jeanette's looking as lovely as ever and has had her hair cut and kindly helps me with my food.

Sue and Joanna the physios are helping me today and Si's coming tonight.

Thanks for the offer Ewan-I really love South African Paal-don't forget the corkscrew!

Lots of Love

Ali x

Tuesday Morning

Bonjour Everyone

Well done Lewis!

I'm really happy because I saw my good friends Martin and Deirdre yesterday. We had a glass of wine and chocolate cake (thanks Nutty Tart) together and tremendous laughs. Thanks for coming such a long way. Love ya.

Lots of love

Ali x

Sunday Morning

Bonjour Everyone

This to say a big thank-you to all those of you who have written to me over the last few months. I've read every single note which has really helped me - so thank-you.

Lots of Love

Ali xx

I'm by no means going anywhere just yet besides I have a new watch which I've just worked out how to use, Sally!

Friday Evening

Bonjour Everyone


Felt better and had a wicked day yesterday. It was Jet's birthday and we had lunch together with wine too. In the morning I planted a lovely little oak tree in the gardens which I hope will grow well for others to enjoy. Great to see Tom again in the evening and have a good chat about New Gen.


Today not so good-can't see so well and feel very tired but nice to see Jeanette's parents. Thanks for coming Trish and Peter.

Love


Ali x

This week has been a rollercoaster ride and we've all been very worried about Ali. He was very poorly for three days but is better now and back to himself.


We've had 2 early morning shower sessions with Ali in charge and the bathroom awash! Elsie, Jackie and Kathy were soaked but he was so funny and we all had a good laugh to start the day!

The staff are wonderful and Ali feels very safe and happy here which is a blessing and we all feel priviledged to be cared for in such a special place.

Love

Diana xx

Tuesday Evening

Dear Friends

Ali has had a difficult day and due to heavy sedation is increasingly tired and sleeping more and more.

Time is precious and potentially short so therefore we have decided that it is in both his and our best interests to limit visiting to family only.

I know many of you wanted to see him but I hope you will understand and respect our decision so that we can spend this special time together with him whilst we can.

With Love

Diana xx

Tuesday Morning

Bonjour Everyone

Had a bad headache yesterday so spent the day sleeping after strong drugs and missed out on breakfast, lunch and supper! Doh!! Making up for it today and am on second breakfast already.

Thanks Sam and Vicky for the wicked portable chocolate supplies-looking forward to a choc feast between meals.

A big thank you to Ingrid and Grant for making super meals and looking out for my Dad and to everyone who's been so kind and sent cards and pressies.

Love

Ali x

Sunday Morning

Bonjour Everyone

Yesterday I had a great day with Si, Jo, Dad, Mum and Jeanette-very special. Thanks for helping me in the banana bath Si and Jo-glad you managed to stay dry!

I had a lovely surprise visit from Dr Elena Wilson-sorry I was so sleepy but thanks for coming and the wicked chocs. Please send my love to everyone at the Royal Free and especially my good friend Alison.

It's a beautiful sunny morning and I'm looking forward to a big fry up with Dad after my bath and then a push in Chorlton later with Jeanette.

Love

Ali x

Saturday Morning

Bonjour Everyone

I'm still in bed and been fed warm weetabix and Mum's chocolate goo for breakfast and watching Sky Sports. I feel really tired but that will go I guess.

Thanks for coming yesterday Wozza great to see you and go over old times.

Thanks for the tee-shirt Jane-Anne the Zen Dog quote is wicked:

He knows not where he's going
For the ocean will decide
It's not the DESTINATION......
...It's the glory of THE RIDE.

Keep em coming

Love

Ali x


Ali is very tired now but happy to be here. He's so well cared for and as always has made his mark. Everyone loves looking after him because he never fails to take an interest in them, is always ready with a joke and a polite word and has never complained. I'm so proud to be his mum.

He knows the score and that he doesn't have that much time but is talking about it and is accepting of the situation which is comforting for us.

Please keep him in your prayers.

Much Love

Diana xx

Thursday Morning

Bonjour Everyone

Mum said to me this morning 'While there's life there's hope' which really stuck with me. I suppose while there's warm weetabix, honey nut cornflakes, Maynards Sours and chocolate After Eights I'm alright. So no-one worry we're being looked after.

On Tuesday Jet took me for a spin in the Golf and we went to see the Bouscale family at Lower Farm which was really cool. Thanks Jet for the lift and sorry for my music taste (Music of the Incas) which I know you don't like!

Simon sorry I was asleep when you came but it was wicked to see you (and pizza) and have a good chat and thanks Lucy for the massage

Dad glad we had breakfast together (fry up) yesterday and it was great to see you Rachel thanks for coming hope to see you before your 40th (oops).

Thanks everyone for your support and I'm sorry if I've missed anyone but I think about you all.

Love

Ali x

ps Awrabest-who are you-please let me know.

By the way the picture of me in the bath (nice one Ann and Julia) is exclusive to the Blog and is not to be passed on without a health warning!! (Joke)

Tuesday Morning

Bonjour Everyone

Great news my hair is growing so I'll have a mullet in no time!!

Sorry I missed you Phil as I was asleep but look forward to seeing you this afternoon.

Great to see you yesterday Dinga as always (all the girls fancy you) Ow Ow Ow!! Thankyou for the super music but sorry I nicked your memory stick!

Thanks for coming Chris and David and bringing the memories of happy days with Powder Hound. Loving the grapes, chocolates and the roses. Keep blogging as I love to hear from all the Conways.

Love

Ali

Sunday Morning

Bonjour Everyone

I've got some lovely yellow roses from Mum at the bottom of my bed and I feel very safe here because everyone looks after me so well. My steroids are going down again so I'm eating less and feel happier because of it.

I had a great day yesterday because Jane-Anne (J-A) came to visit and I haven't seen her for 18 years since we were neighbours in Kimpton and she made me a lovely big Guiness cake -yummy! Thanks for coming J-A great to see you again.

Sally Chapman dropped by too and took me for a push in Chorlton round the beautiful gardens-please come again Sally good to see you. Bernie and Karin came as well on their way back to London. Today I'm looking forward to watching the Grand Prix with Dad and seeing my old friend Franny later.

Thank you Bob Wilson, Russ, Fatnick and everyone here for helping me to have some happy dreams of an awesome day out.

Thanks everyone for your comments we read them all so please keep them coming.

Love

Ali x

Friday Morning

Bonjour Everyone

What a day! Fatnick and I had a trip to the Arsenal training session and we met every single player including Arsene Wenger- thanks Russ for arranging it.

I started the day with a big breakfast (Chris came in specially early) and we went in the Hospice Minibus with Brian and Alison and parked in Mr Wenger's space-he didn't seem to mind! We met the players, had our photos taken, watched them train -then a healthy lunch before coming home. The whole day was excellent and we can't thank Arsenal and everyone enough for a super day.

The Chaplain (Liz) bought round some cans of IPA which I had with Matt and Tom whilst talking New Gen how exciting. Jeanette came in the evening (and looked gorgeous) and Jo came with Si, Charlie and Archie and also looked gorgeous.

Love

Ali

Tuesday evening

Bonjour Everyone


I'm being looked after very well by everyone and I'm so happy because had a safe bath in a jacussi shaped like a banana this morning!



It was lovely to see Marzipan and Jo yesterday and Julia who brought me another Easter Egg which we had in the night! Nick came today and Si and Jo are coming tonight for a few days.

I'm so hungry because they've doubled my steroids but the food is great and the chef made me a splendid apple pie for my supper!!!! Thanks Chris you're a star!

Love

Ali

Monday Evening

Bonjour Everyone

On Sunday I had a bad headache and was rather wobbly so I came to the Hospice of St Francis in Berkhampstead.

It's a beautiful place and I have a lovely family room overlooking the gardens and Mum is staying with me. The Doctors are going to assess me and sort out my giddyness and I'll be here a few days before going home again.

Everyone is so nice and helpful and they food is great!!

Love

Ali

Friday afternoon

Bonjour Everyone

Well we are home now. Dad did a super job and we did the journey in 12 hours (700 miles). Mum kept us provided with food although I slept 90% of the time.Mum and dad had quite a lot of difficulty waking me up.

Looking forward to a quiet weekend at home. Still very giddy but hope to be on my turbo-trainer soon.

Thank you Bob Wilson for your blog and the support from the Gunners.

Lots of love

Ali

Thursday morning

Bonjour everyone,

I'm very sad to be leaving Annecy but it's only temporary. We'll be back in a few weeks.

Simon is here and yesterday we had a super push near the lake and we all went to La Bilboquet for the best lunch ever! The pudding was devine with hot chocolate sauce and ice-cream.....ooooooooh it was nice!!

Dad is going to drive us home today and I shall sleep in the back. Mum is the navigator.

Paul Chambers has kindly organised a trip in a helicopter and a A9 Audi! Oh it's a bad boy! I can't wait to see it and take some photos.

I'm so looking forward to going to the Arsenal and meeting the squad next week with Fat Nick. Good times to be had!

Love

Ali

Monday morning

Bonjour Everyone!

We've had a great weekend! Been for several pushes round the lake, had coffee and ice creams and driven to our favourite places. I love it here and Annecy is wonderful in the spring.

I started on Prof Pilkington's pill regime (Clomipramine) on Friday and feel ok. I'm still very dizzy but don't feel as tired which is good but I'm hungry all the time and I'm eating like a horse! Hey Ho!!

Simon's coming tomorrow night until Thursday and I can't wait to see him.

Love

Ali

Friday afternoon

Bonjour everyone,

Dad chased UPS until the cows came home last night. At 5pm they were supposed to be here and they were still in Luton. DON'T USE UPS!! So this drug regime I'm trying starts tonight. I feel happier because I'm actually doing something.

I had a lovely day today. It was great to see my friends, some of whom I haven't seen in a while, including Katie, Chisper, Rob, Pip, Andrea and Laurent.

Will blog soon, love to all.

Love Ali

Thursday morning

At last we're doing something. Today at 4.30pm we are getting some drugs UPS'd from England. I don't know much about these drugs but Emily thankfully read about them. I'm very happy to be doing something.

Yesterday we went for a push by the lake and lunch in La Bilboque, which is a lovely restaurant with a cheese-board to die for! We saw Rachel & Tom and Jacques, Francoise & kids. It was so kind of them to come.

Today, hopefully Jacques & Francoise are coming to take me for a push and then Tom's coming over again to chat. I love seeing Tom.

Simon is coming after the weekend - I wish him well with his new house! And HAPPY BIRTHDAY TODAY ARCHIE!

Love Ali

Tuesday morning

Bonjour Everyone!

I feel like I'm in a dream - every time I open my eyes I'm at home in Annecy! I love it here so much!

Firstly, I need to apologise to Mum for pestering for food (steroids) for the 13hr journey down here and secondly thank Dad for getting us here safely.

I still can't walk on my own and need help getting around because my balance isn't so good. My sight and my hearing aren't so good either but I'm happy don't worry!

It was great to see Martin and Deirdre yesterday and Tom here for dinner and I'm looking forward to seeing more friends soon. Jeanette and I are going for a drive today up Semnoz and Forclaz! Yippee!

Love

Ali

BONJOUR EVERYONE!!



I'm in bed at the moment dr. Ingram is coming today to check out whetherDr Pilkiington's was of treating me could work. I hoipe so then at least we are\doing someyhing. I did feel that if I took the PCV drug it was doing plenty of harm and not much good. From speaking to people in the know it sounds like PCV is not as helpful. Dad kindly drove up to the 'free yesterday, got my scnas and we parcel forced them to anoethr professor in Stockholm. I hope we go there because #ve heard it's nice. Never been!


I ike staying in bed - It sems safest fore me but Paul took me for a spin yesterday which was really nice to get out.

LOVE



Ali

Wednesday morninig

hello all

we've decided that Sunday is easier to drive to Annecy so we are going then - no lorries on French roads on Sundays!

Im ok, i am not down for some reason, I intend to have some fun (as soon as this dizzyness goes!) WE will go to Devon, and Suffollk when we can.(Where we went as a young family) Oh I do want to go there . I have such
Seems like i want to go to so many places - i do and we will. fell out of my bed yesterday and dad had to xcome and rescue me - i have such fond memories.

You mighthave read that we are not going for Chemo. I just don't want to feel ill ( and I will) so, we have decided not to go for it.W e 'll see what happens. I'm stll tired from the radiotherapy so gosh knows about the chemo. I'll tell you!

Love

Alii

Hello eveyone

We'r off to Annwecy on Thursay.....yippee!! I'm so excited. Dad is going to drive, I'm navigating and so is mum.....from the back seat ha ha!

Then, we hope to go to the chateua du berne for a wee break next week. It's such a lovely place - we'll take some photos.

I 'm okay Im not down. I have so much love and support from you lot. I read the comments every day and so do Mum and Dad - thank you.

love

Ali

Hi eveyone

I'm in bed at the moment. We've just had a lovely Macmillan nurse called Lisa come round and ask a few questions - she is really nice - good job! '

Mum needed to ask some questions and so did I. We have the answers now! Can't really say what they were - bit morbid! Actually ou arwar friemds and we've been through a whole lot soo i'll tell ou. I just wanted to know how it will end - very sleepy and upstairs - good job eh?
pppjet is here and actualy I'm very happy apar from the fact that I'm out of balance and have a big tummy and cheeks - they will go. we had a sd a super day on Saturday at tony and Alison's wedding - absolutely brilliant all the lads and Tony and Alison - brilliant. We all wish them all the best. We are off to my apt. in Annecy on Thursday and then down to the Chatea du Berne in Provence. Therefore we may be offline for a few days.




love

Ali

Thursday evening

Hello Everyone

Oops! It's bad news I'm afraid. I have what is a fast growing tumor in an innoperable place that is the brain stem. A level 4 tumor. All that remains is chemotherapy and to be honest we're debating going through that. There are a few side effects that are not too nice and we can't decide whether to go foer it or not.. It's only a 30% chance.

I was in awe of my mum, Dad, Simon and Jeanette today.To see people so positive for me was wonderful, truly wonderful. For that I'm in their debt. Well, THINKSHRINK didn't work,it wasn't meant to but thank you all the same, thank you.

There is too much love and supportfor us to drop THINK SHRINK so please keep thinking! Don't wory if I sound a bit down, I'm far from it, jsut a bit shocked.

Hey I'll write tomorrow

Love


Ali

Hello everone!

Mum asked yesterday morning why I haven't done my blog. I said thgere is not uch news really apart from the fact that Julia gave me the nicest and thinkest Eatser Egg you have eve\ra seen - thank you but Mum and Dad won't let me eat it!

Ok so yesterdays news is that Mum and I went for a ride in anbulance ha ha! We#ve never done that before.

I fell over in my bedroom and cracked my head ( I really cracked it!!) It started bleeding pretty badly then I was sick (it's alright we got it ALL) so we called the ambulance. They (Dan and Michele) said it was a good call caling them - phew you always worry.

So we went to A&E and got glued up.

All is good don't worry. all is good.

Mum went mad and now there are towels round all sharp corners in my bedroom. I fell over in the bath on Thursday so we have to work that one out next. The life! Haha.

Love

Ali

Sunday eveninng

Aparently I being a pain in the bum. I've gone down on Steriods and could eat a horse. Well, almost! Poor old Mum and Dad face a constant harrassemnt about food. I've gone over 13 stome and am normally 11!! I've lost caring because I t shoshould wear off quickly once i'm back on my trainer.. TRouble is it''s in France!! Good thing is that we're talking about taking the train to Annecy yippee!

Wednedsay Evening

Bonsoir eveyone!



Mum told me that I had to blog so here I am!! Right, the competition for naming the wheelchair is now closed. thank you for your entries and I've chosen 'Chorlton' thank you Zoe, it just stood out for me and Mum did some research to find out that Chorlton is the happiness dragon and happiness follows him wherever he goes. Here is his website if you're bored.... .http://80scartoons.co.uk/-andchorlton-the-wheelies.html

Ha ha it was quite funny yesterday. Mum and I went for a 'push' yesterday. Cor, wheeling in a wheelchair is wheelie difficult! aha . I'm trying to be funny sorry. We only went about a kilometer so and it nearly killed us.

Right, as far as Think Shrink is concerned we have a consultation with all and sundry next Thursday at the Royal Free. Cant wait. ha ha. Seriously, I don't know what is going to happen but of course I'll let you know asap so hang by your computers next Thursday afternoon. As far as I know there are a number of different option of whci I'll tell you about in the next blog or so.

Love

Ali

bonjour everyone!



Sorry to keep you waitimg but no news I'm afraid. So, we have to wait until 12th qpril for news. It's a bit frustrating but i am okay to wait if you'll wait with me?



The only nightmare is this dizzyness I hope it goes. I'm so giddy you wouldn't beliieve. It's as if you've turned around quickly about 5 times and then tried to be normal. Mum and Dad have been superb - I have to ring as bell for them to take me to the loo - it'\s quite funny really.



I need help getting up and down the stairs. Thats not as funy because the stairs is quite steep.



Never mind.



Si, Jo and the boys came yesterday so we had a wonderful time by the lake in St AlBans. Poor old si had to push me round the lake, now I know how much effort that was to the hoo end and back again Phil! YOU must be really fit!!!

Love

Ali

Saturday morning

Oh! had a perfect day yesterday.I had my appoitmentb with the speech therapistist and scoffed what in she gave me. Wendy,and pam were at the scan, bianca was away so I took some biscuits from scotlnad - i hope they're nice! TaTheyt.ts so that kind when they stick the needle in!
Thanks for lunch Dinga!
Then the highlight of our day - we went to shenly and got fitted for a wheelchair.....excellent! It fits wel and 'm very excited!

We'll give it a go this morning.

Result for think shrink should beeee out on 10th april and I'LL MAKE SURE THAT YOU'LL BE THE FIRST TO KNOW

LOVE

ALI

ps From Mum: Ali's eyesight is screwed at the moment as you can tell and it's difficult for him to type but he wants me to ask for names for his new friend, the wheelchair, please.

Bonjour everyone!

Big day today, We're off for my first scan at the Royal Free I'm looking forward to showing them how much of a change there is. Well, If i'm thiss giddy there must be a channge!!!!!! Yippee Think shrink!! Will write later Love you all Ali

Wednesday Evening

Evening all!

I am happy to report that I'm back in England and I'm being looked after tremendouly well by my Mum and Dad.

Thanks again so much Martin for taking me to Chambery and to you Phil for dealing with the well organised easyjet wheelchair fandango!!!!!

I am sorry that I missed you the Finches and Turbs the other day, I was in the land of nod.

Friday is the start of many scans to checkout the size of my friend. So please THINK SHRINK.

Love Ali

Friday Morning

It’s 4am and I’m trying to sleep, Good job I’ve got my laptop!! So I’ll write the blog.
I’m sorry that I’ve not written anything for a few days, it’s just that nothing much has happened.

I’m really happy at Chalet Tarentaise, I so feel that I m looked after by Martin and Deirdre. It’s coming to an end though, off to the hospital for a scan.

Thanks to you all everything should be fine though 0 of course I’ll write the blog so you’ll all know

Love

ALi

Bonjour

I think (and so does martin) that a bath before a little snooze does wonders. It does!! I woke up after about a 4 hour kip and felt great. I must admit, I feel a bit less dizzy and therefore get rid of the last thing that’s wrong with me. All I’ve said for the last few weeks is that I feel fine, just a bit giddy. I wonder if it will go?

So today;
Cup of tea
Muffins!
Write this blog
Nice hot bath
Sleep for a few hours
Martin. Deirdre and I have lunch
Martin and I go out for some fresh air (hot chocolate!!)
Back to bed before dinner
Back to bed
MORNING AGAIN

I don’t mind the sleeping bit because I know it’s s helping me get better.

Speak soon

Love

Ali

Monday Morning

This is the fourth time I've tried to blog and lost it all! So, I'll tryagauin tomorrow.

My mum and dad were married for 40years today!!! Big congratulations them!!!!

I'll try again tomoroorow with th eblog sorry about this technical fault!!

Love
Ali

Bonjour everyone!

Not much to report yesterday I'm afraid because Jet and I didn't leave the apartment. I just felt that I should stay in bed so I did. I'm just following my body at the moment. Tom.and Sean came round to say hello which was lovely. I fell asleep from about 2pm and I woke up at 8pm - great! The more sleeping I can do the better.

Jet has taken over mum's mantle of looking after me - awesome!! Thank you both

We're off to Meribel today so I'll have more to to report in the mormimig!

Love

Ali

Awrabesr ok!

Wednesday Morning

Bonjour evetyone!

I'm sorry for not writing for a couple of days -things have over taken me a bit

Monday I was biit dwn and out because I'm so, so dizzy. and , for the first time, I'm getting tired of not being well - 'How are you doing? and I alway, always seem to answer with 'just dizzy, giddy an out of balance'.So, Mum made me draw up a list of things are improving right now -

1. No bad dreams
2. More Energy
3. Not eating like a horse
4. No sweating as much during afternoon sleep
5. Dry mouth is going

There are 14 things but the piece of papaer is in the other room, it's 6.3am and I'm not hunting around for it!!

I was very sad to see mum and Dad go and in a way have lost my protection but it's okay - thyeyare coming back very soob. Jeanette is here and we're up and running again. I didn't leave the aapt. yesterday - thought it might honestly be safer to stay indoors!

This dizztness will go and if you don't mind keep THINKING SHRINKING as that should help aswell.

Awrabest, thnka for the static bike suggestion, I'm about to get mine set up and running -will let you know how it gows. Just a quick question. Who is Awrabest?

Love

Ali

Sunday Morning

Bonjour Everyone!


It's 5.30am and we're part of the wide awake club this morning! Yesterday saw the Thomas family come down and visit us as they needed to do some shopping for their Australia trip next month - awesome!

John and I went for lunch together, had a great catch up and that was that. It's just the giddyness for me. Sitiing down I'm fine, it's just up and walking that the problem occurs. As soon as my head isn't spinning I'll be out on my bike and getting fit again. I can't wait. If that is getiing all problem for the moment, then I can deal with it but I am getting tired of this dizzyness as the moment. I hope it goes.

Mum and Dad have been great! I've got clean windows all round te apartment and clean floors, new flowers in the window boxes and new lamps by the beds oh! and a new microwwave!

It's always great having your Mum and Dad over.

Today is a very chilled out day - I don't think we'll even leave the apt.

Love

Ali

Saturday Morning

Bonjour everyone!

I'ts early, I'm still in bed but I did sleep better than ever. Great!! All these little steps that I'm failing to acknowlege but other people are pointing out - the sleep patterns, the eating patterns etc. None of that matters when you've still got major problems with your balance!!
I can't remember being this out of balance before. I certainly can't be left alone and i cant be let out alone....yet!! I'm a liability! We'll see. I just want to get out on my bike and start shedding haha.

Anyway Mum and Dad are being brilliant at looking after me. Actually to tel a secretI didn't sleep in the day yesterday which is good/bad. I reallywant to try an dget back on to normal peraon sleep pattern so I guess thats the best was to do it?? Any Suggestion?

Today we're really excited because we've got theThomas family coming to do some shopping and we cant wait to see them!!

Love

Ali

Bonjour eveyone!!

I'm so happy!! Martin kindly brought me down to Annecy yesterday yippee!!. We met with good old Mike Johnson and went for lunch in my favourite restaurant. It's my fav becauswe it's always hussling and bussling - I love it oh and the food. The desert was awesom , sorry Jet and Dee but you did have to have the pudding mmmmmm haha. Can't catch meeee. haha

Mum and Dad met us at the apartment and after a bath (thanks Martin!) all was good.

Great, absolutely super, to spend some time with Mum and Dad and just fiddle around the apt. I'm so happy.

I think we need to make the most of days like these. Absolutely

I love Annecy

LOve

Ali

Monday Afternoon

Bonjour everyone!





I'm still in bed but I had a great day. Yesterday I just didn't feel like anything - completely exhausted. Martin and i went for a small walk. I hadn't slept much but went to bed at 3pm and didn't wake up until 3am!! Wicked. I then had some breakfast at 3am with Martin (thanks for the muffins pal) then slept through until 9am. Great. Sleep is the great healer.



So, after having so much sleep I was up ready to walk. We didn't walk as far as the other day but still it was beautiful. Looks like the weather is changing a bit and we go the last of the nice weather.



Back home, bath, Travis's fish soup which is lovely - just divine - it's worth coming to the chalet JUST for that!! then be again, I can't stop fidgiting (my left side is going mad!!). I'm not well YET I intend to be very shortly, everything is on target to being better.

I haven't forgotten about THINK SHRINK and neither should you!!!!

Love

ALI

Sunday Morning

Bonjour Everyone!

Wow! What a great night Friday was. New Generation had a mid season party at Evolution Bar in Merbel and Jet and I went along. We got a small clap from about 60 people when we walked in! It was so lovely to see our Friends again. I'd not ever even met a couple of instructors before so it was really nice to put a name to a face. It was all a bit overwhelming so we left after an hour but absolutely loved seeing our friends again. Thanks Jen for organising that.

Guess what?! I'm very excited!! On that Friday afternoon Jet and Francoise went to the bank to talk about my Annecy mortgage. In France you choose a mortgage protection in case you are ill. Well I guess that applies now so it look like the bank will pay my mortgage for the foreseeable future yippee!!Well, lets hope so! I'll let you know!
Mum and Dad are in Nice and driving up to Annecy for Wednesday to meet us and give Martin and Deirdre a wee break. We are staying at the Annecy apartment for a few days together - yippee! I'm looking forward to seeing Mum and Dad again.
Love

Ali

Bomjour everyone!

I've had a lazy day today. I fact I've done nothing. I woke up at 2am,wrote my blog, watched a bit of Heros then tried to sleep again but no joy oh these steriods!

I've not left bed today, it's funny I know I should walk or at least do something - it's instinct but in fact it must be my body saing hold up - wait a bit and rest. So I am.. I actually have got up don't worry!!

Tomorrow Bernie is taking me to Meribel as New Generation have a small mid season party. I can't wait to see my friendsa agaim.

So,It should be fun tomorrow

Love

aLI

Bonjour everyone!

What is a brain tumour? I can't see or feel it but I know it's there. I wish I was back to me again but i'm not so I just have to wait until I guess I just get better. Thats is all I'm thinking of at the moment and it's what keeps me going - getting better. Well, better than this. Sue, Tom and Oscar came to see me yesterday and it was lovely to see little Oscar with so much energy. Oh I wish!

I do feel that I'm completely in the best place for getting better. Martin and Deirdre are tireless in their help throughout each day in helping me get better. Thankfully they are able to see the changes and constantly remind me of it to keep me going. It does , it helps tremenndously.
Yesterday was great. Jeanette came in the morning and we had breakfast together then I was offf to bed for annther sleep until 4 pn ish. Tom, Sue and Oscae came to visit, we had a walk up toward the next village and then came back - awesome!

It was great to see the Saxlund bunch on such fine form.

Then we had dinner and bed. It seems like I'm sleeping loads and I am. I'm waking at 2am and writing this blog then I try a get back to sleep for an hour or so then up for brekkie back to sleep for a few hours. Then lunch and a walk then a bath then bed again. Up (sometimes) for dimmer then bed again. We all know that sleep helps so I'm the first one to bed!

I'll be better - you'll all be part of that. We're fighting a good fight.........together. Thanks for being on my side! It gives me so much confidince to know you are there.

Love

Ali

Wednesday Evening

Bonjour everyone!

what a day! Im positive because I had a great day. It was very simple actually but ar rhe moment that suits me fine. I woke at 2am,fidgeted for an hour then watched a dvd for two hours. has any oe seen Heros? Well it kept me occupied! at 5am I tried to sleep some more but noj joy. Neber mind, Martin came in at 8 to get me. Cup of tea, grapefruit juice and muffin later I'm bcak in bed. I didn't feel like getting up so I didn't. Back to sleep amd I'm off until 1pm would you believe. Okay. fitness has sort of started now. Martin and I went for a 4 km walk!! It was along the cycl;e track, beside the river below Bourg St Maurice. What a beautiful wallk! I was so really tired my legs were killing but we kepy on going. Tunrs out Martin and I did just undet 4 Km. Awesome - it's started!! Getting fit. Yeah! We came back from the walk. I had a haircut (thanks Martin and no, the side bits haven;t grown back yet but THEY WILL!!!! THen I went to bed untul 10 30pm!! I needed sleep after that walk. I'm acuatlly really excited that the exercise will help me sleep through - wicked!!!

How do I feel? My vision is slightly better but I'm dizzy and out of balance as ever. That might be the tumour plukking on my vision bits or hopefully it will be a continuation of the radiotherapy. I hope it's that one!! Other than that I'm just tired and out of balance but hey -It could be worse. Much worse. At the moment it's not so I'm counting my blessings!! Best things today? Getting fit by walking with my great friend by the river. Yours

Love

Ali

Sunday Evening

Bonsoir everyone!

Hey folks I've had a good weekend. My eyes are still squiffy but I'm getting 'used' to things now. Oh how I wish I was better. It seems to be one things after another. Anyway we drove back to Meribel Friday evening (Jet and I) and stayed the night together. Saturday morning we drove to Courchevel and saw John in my apartment to see how he's getting on, then we met Maxim who came to value my apartment for selling it. We'll see how much or how little he suggests! Then we met Paul who needed a nights bed in Meribel then my good friend Jacques and Fracoise. I've been dreaming of the time that I met them again and it was no different to the dreams - excellent!

So, we drove back to Meribel had lunch with Paul which was super (okay so I shouldn't of had so much chocolate mouse!) then I slept for a few hours. I got up for another two hours then 'slept' through until 5am.

How do I feel? I'm really worried that I will stay this way for ever. I do not know what I'll do because I'm definitely an invalid right now - very dizzy. Nightmare! If It's getting better it's getting better really, really slowly. I'm dizzy, giddy and out of balance - massively. Someone wrote to me in November 'If you're going through hell - keep going' (Churchill) and I am. It's not a painful hell as you would imagine more a psychological pain of not knowing what is going to happen.

Anyway after a lovely drive back to Chalet Tarentaise with Paul (thanks Pal) I was really happy to get back to see and be with Martin and Deirdre again. Promptly to bed and sleep for four hours up for soup and for the first time I fancied a walk. So Martin and I had a stroll. Tomorrow we're going for a longer walk by the river. I'll talk some photos so watch this space...

Love

Ali

Friday Morning

Bonjour Everyone!

Thank you Dinga, Tom, Sean and Roy for making the two hour drive over to come and see me - I very much appreciated seeing them

I've just had a bath and feel brilliant! I tend to have baths a bit too hot and need constant supervision throughout. Thank you Phil (Happy Birthday Jenna) and Martin for being Bath Guardians and I'm sorry you both had to deal with my 'episodes' and perhaps see my bits!!

Yesterday Bernie, Jet and I went to Bourg and met Sian, Carolyn, Lotti, Gill and Tilda at Bazoom for a drink. Excellent!

I'm a bit nervous that my eyes and giddiness might stay like this. I guess it's the radiotherapy doing it's best so we'll just hang on I guess. Fingers crossed it gets better.

Love

Ali

Bonjour everyone!

Well Martin and Deirdre have been superb in looking after me because foe some reason I'm as dizzy and out of balance as ever. I can't be left on my own at the moment. Its good and bad because Deirdre feeds me good stuff and there are no shops in the village so I cant sneak a 7 up or sprite without her knowing. Jeanette. Martin and I drove up to La Rosiere yesterday -it was so good to get some fresh air and out for a chaf. Okay I might have looked liked Bill Oddies in that photo - so much so that I have changed it to Jeanette's little nephew's bottom - that is what I think of Bill Oddie!! He wont take offense I'm sure!

How am I feeling?

I'm a bit nervous because if I feel as dizzy and out of balance as this for the rest of my life, I'm not going to be fit for much. I hope this goes. I can't ski just now, I can't ride, drive and walking is really difficult. I've had to go up on ,y steroids. I don't mind or care anymore because I'm home and I should be getting better.

I've not seen many friends because my phone has been turned off. We decided that its best to sleep and get over this. By golly I've been sleeping. I should win some sort of award for sleeping!!

Love

Ali

Tuesday Morning

Bonjour everyone!

Sorry for not blogging for ages. I've been having so much fun and being looked after tremendously well by Martin and Deirdre. I have to do something about the photo of me that Martin posted - I 'm sorry but I do look like a county bumpkin. You'll be pleased to know that I have had a proper wet shave (it hurt like hell because Chris's blade was blunt).

Days go like this at the moment:
Wake up at 3am sharp. Fidget for an hour. Decide to watch a movie (watched Million Dollar Bay this morning - Excellent!). Then watch news till 08.30. Martin comes in with a cuppa and then we are up! Martin, Deirdre & I have brekka which consits of muffins, porridge & orange juice. See, I told you I was being looked after. Do my relaxation exercises, then back to bed. 2 hours sleep then up for lunch. All healthy. Out for a stroll in the sun and a hot chocolate somewhere in the village. Then back to bed. Up again for dinner and one of Travis's desserts.... Luverley!!. After that it's back to be until 3am.

I've still got a numb face and I still can't see properly so I've had to up the steroids to 14mgs. Damn. Not to worry Jeanette is coming to the chalet this evening Yippee!

Love Ali.

Good Evening.

It's Martin here. Ali is staying with us for a few days and has asked me to let you all know how he is getting on.

Although a little better today, his eyesight is very "squiffy" at the moment and he is finding it quite difficult to type. He was going to dictate something but the lure of his bed was too great!

He is in pretty good form but would like to see his vision and balance start to improve a bit. He also has some numbness around his face which he would like to see the back of. On the good side, he has been sleeping much better for the last few nights.

Two of Ali's good pals, Tom & Sean came to see him tonight which he really enjoyed.

Agenda for tomorrow is breakfast, short walk in the sun, coffee on a sun terrace, sleep, lunch, bath, shave (Jeanette is coming to stay on Tuesday night!), sleep, bit of telly, dinner, a visit from John & Carolyn, then off to bed again.

I'm sure Ali will be back in full "blogger" flow tomorrow. Meanwhile I will try to post a photo I took of him yesterday.

Martin

Friday Evening

Hello everyone!

I still can't see too well so I wont be long I'm afraid. Today was great, I woke up at 4am but felt that I wanted to sleep through and so I did! Normally I need to do something like go on my lapdog or listen to a talking book, but it didn't happen. Thats a big step for me. Each day I find little steps like that take place and it's normallly forgotten inless it's big. Jet notices how I am and the changes as well,

So, I got up at 8.30, brekkie, bed, up at 1pm, lunch, chill, we even walked outside and sat in the sun. It was simply lovelly just sitting in the sun just talking about things. Wow. Every day I hope to go out and do the same. If i can see more tomorrow I'll write more so I have to apologise for this meagre amount......;-)


Love

AL

Hello everyone!!!

I've got a bit of a headache, my hair has fallen out, my nose is numb, my mouth is really mettallic, I've put on a stone - we measured my waist, it's a metre round and my leg and arm muscles have wasted away. Do I care?

I'm home. I don't care because I'm happy at home.

The Farewell team (Rachel, Carolyn, John, Martin, Deirdre, Nix, Tom, Dinga amd Phil) came to visit us last night and have dinner. Martin cooked a wicked chilli and Carolyn cooked an awesome date pudding. oh, not to forget Nix and her salad - thank you.

I've been feeling a bit dizzy, giddy and generally out of balance. Jeanette will not leave me on my own when she goes to work. So, I'm going to stay with Martin and Deirdre for a few days and I can't wait!!

It just leaves me to say a huge thank you to my good friend Phil. from both Jeanette and I.

Thanks Phil (I found the chocolate!!!)


love to you all

ali

Ali is back home

Hi,

Ali is really tired at the moment so he wanted me to let you all know that he arrived home yesterday after a smooth journey. A massive thanks to Phil who embarked on the roadtrip with Ali and delivered him safely back to the Alps.

You know when you speak to someone on the phone and you know their smiling and happy, that's what I felt yesterday and certainly the best thing that has happened to me over the last few days. We are all hoping and praying that he gets better in France.

Ali hopes to be in touch shortly, watch this space!!

Live strong

Si

Bonjour Everyone!

It's 5am again and I'm waiting for the sun to come up again. My sleeping is still eratic and I know I'm not too well just by the way I feel. There was a close shave at the Royal Free yesterday! I met a new doctor called Sarah who was really nice but concerned by the numbness in my face. She wanted to bring forward my MRI Scan TO NEXT WEEK. How very dare she?! Think Shrink continues for a couple of months I'm afraid. I could do with your help.

All, ok because she phoned through to my consultant DR Wilson, and she wants to keep the date of my first post radiotherapy something or other , the same. We're all systems go for Monday. Yippee!Oh, by the way, Alison told us yesterday of a Grade 4 Glioma chap that was diagnosexd 4 years ago and is now back again driving. Grade 4 is the most dangrous of them all. Malignant. That was fantastic news for me because I really miss my driving. I really miss it. I'm sorry for being a back seat driver Dad/Jet for the last few months! Doh!

I won't Blog for a couple of days because Jeannette, Phil and I will be busy trying to get home. Now this doesn't mean you shouldn't visist the Blog if you don't mind! I've been checking the counter at the bottom and we've had more than 12,000 individual hits. Si and I, well Si set that up on boxing day. Stay with us please. We're on a journey, together.

I'm really quite excited right now because today I'm meeting the man who really taught me how to ski. More about that next time!!

Love

Ali

Thursday Afternoon.

Bonjour everyone.

I've just had lovely soup for lunch...MMmmmmmm. Carrot and coriander soup. Thanks Jeanette.

Never bite the hand that feeds!

We went to the docs yesterday just to check blood pressure and ask him a few questions about going away. See, I told you we were being sensible!

He asked me if I'm in any kind of pain. It made me think actually that I've never been in any kind of pain since day one (all those months ago) to right now. It's been more emotional pain than anything else. I really, really feel for anyone who might suffer through pain in all this, actually, it's been quite easy regarding pain, there hasn't been any apart from when I didn't have enough steriods and my head really hurt at Christmas time. That was PAIN BUT, there was MORPHINE! Cool!

Love

Ali

Thursday Afternoon.

Wednesday Morning

Bonjour everyone!

It's early wednesdayMorning and once again I can't sleep. I've had my quota of Tomazapam and I can't really have anymore. I could, but not yet!! Only kidding mum, don't panic! We're going to do the Great Escape sensibly, would you all believe? We've got an appointment with the Doctor tomorrow then we're going back to the Royal Free to see Alison on Friday (Radiotherapy Review Specalist). Once we've got the general all clear, Phil and I are heading off Monday morning. Oh how excited am I? I'm beside, myself with excitement. We'll stop in Annecy for Monday night then head up to Meribel For Tuesday. The 'farewell' team should be there Tuesday evening to welcome us back again. Yippee!!

I forgot to mention that Jet and I are in full flow for organising our wedding. Yippee!!! This is great because it takes our minds off things a bit at the mo. We seriously have the BEST BAND in the South of England! At Warrens wedding 10 years ago he had a band called Bonabrill and they were fantastic. I remember thinking that when I get married we'll try and have the same dudes because they were grrrreaaatttt! Well, we have! All booked - that was the first thing I wanted to do. Oh, we have no caterers yet. That's todays problem!
I'm stil not well yet. I don't expect to be for some time - I'm really, really tired. BUT, I can now be bothered to do some things. Fatigue is aweful, it's like you're a really lazy old man all the time. Many thanks to Jet, Si, Mum and Dad and Jo for going to do things that rightfully should have belonged to me! I'll be back doing them and a few more things - dont worry!

Love

Ali

Tuesday Morning

Bonjour everyone!

I'm sitting here in bed in Hertfordshire and it's really, really raining outside. Not to worry, it's less than a week before we head out to France. It's STILL snowing over there so the same thing I guess!!
We had a super couple of days down with Si, Jo and the boys. I slept all day Sunday but the guys were so welcoming and understanding to what is going on. Sleeep! Thanks guys!

How do I feel? Well, I feel better for the first time in months. My ears are still itching like crazy (that aqueos cream is awesome thanks Alison!), I can still taste the mettalic taste, sleeping at night is a mission although tomazapan is making a very small comeback and the worstthing is my balance . In a crowd I do feel like an invalid. Not for much longer though - that's down to all your support and help - THINK SHRINK!

Best thing yesterday? My good friend mailed the Arsenal`football club and somewho managed to get an a friend/helper into the first team training!! We get to meet the team and have lunch with them ha ha!

Worst thing yesterday? The only date available is when I get back to France!!

We're working on it - donta worry!!!!

LOve

Ali

Sunday Morning

Bonjour everybody!

I'm still in bed! Well, it is Sunday morning I guess. Best thing that happened to me yesterday? It's my Nephew, Charlie's Birthday later this month so I got him a red arrows flyimg suit. He loves it and wore it to bed because he liks it so much! I'm really happy about that. I'll post a photo that I just took of him and get rid of the......' Dead Mens' Fingers ' which is a sort of Sea Aneneme which Roy and I came across when Sean Kayaking just off the ummer Isles a few years ago...anyway, moving on! No-one got the right answer!
We had a great day yesterday as we drove from Jeannette's parents in Tunbridge Wells to Si's in Poole. I'm bored of being a backseat driver but happy to be one at the moment, if you see what I mean.
In terms of health I'm getting better each day. Thanks to you Thinking Shrink I feel better. Still a bit dizzy and my legs are weak but that's about it. Eyes not quite right, sleeping badly but we're nearly there. I can't wait to get better. I really can't.

Love

Ali

Thursday Evening

Bonsoir everyone!

I'm really sorry for not blogging yesterday - I pretty much slept most of the day apart from when my good bro Si got here. To be honest I got up feeling a bit naff both in terms of how I felt physically but also emotionally. I was tired of getting up once again feeling out of balance and giddy - another day of it. I can deal with it in the short term but I just felt that yesterday was enough. There is nothing I can do about it apart from feel miserable. Thanks for pulling me half out of it Jeanette and thanks for doing the other half Si! I went to bed having had some Ben & Jerrys chocolate fudge Mmmmm. Good things they said to cheer me up started with it looking like my cheeks had gone down a bit and they thought that my hair had started growing back! Wicked! Only a little bit is starting to sprout and pretty much only on one side but there we go! Good news.

Today saw us go and pick up my good friend and colleage Tom, from Watford at rush hour. Lots of cars going somewhere but very slowly! It was great to hear first hand about New Generation and I'm really excited to get out and lend a hand. I won't be skiing for some time but even going to the office and drinking tea and eating biscuits with Matt will help!! I'm so excited.

I feel much better now. Si and Tom came and saw me - that really helped.

Love

Ali

Thursday Lunchtime

How much Blog could a Web Blog Blog if a web Blog could Blog Blog?

Thanks Carol - see you in France!

Sorry for not blogging guys, it's been a bit hectic at this end. I've got my good friend Tom over until this evening. When he goes I'll give you an update. I'm fine thanks - no drama this end.

Love

Ali

Tuesday Morning

Bonjour Everyone!

We're back at the bungalow in Welwyn now and ready to do nothing today. Well, actually there are a few things to do like insurance and paperwork but you don't need to know about that!

We had a super weekend at Lower Farm and yesterday were going to do something after Jeanette had finished work but I was sleeping for England! I got up, had breakker then went to bed and slept until 4pm! I could hardly get up the stairs again. That is actually quite scary. I had Jeanette pushing my bum and me on all fours. scrambling up the stairs. Good job we've come back to the Bungalow! It's a weird sort of tiredness. My legs just start to collapse and I sort of come in and out of conciseness - scary! I need to be prepared for it and generally I am. I wasn't in the cinema with Si and J whilst watching the Golden Compass. I snored so loudly that I woke myself up! They had to carry me out at the end!
Then we went for a curry in St Albans with mum and dad last night which, as always, was awesome. Thanks for dinner dad.
So, actually there is quite a lot to organise before leaving so we'll get through this paperwork.

As you can probably guess, feeling okay this morning. It's grim outside but hey, that happens here. I guess it's what's inside that makes you feel good. Less than 2 weeks and counting!

Love

Ali

Bonjour everyone!

Monday morning and it's grim weather outside. Not to worry, we're feeling much better after the weekend. Thank you for your comments and support (we read them all the time and they make SUCH a difference to how we feel). Okay, so I/we were a bit down. But all is okay now. We're just going to crack on with things, plan ahead for the good things, take on the bad and enjoy as much as we can.

Phil and I have planned our trip back to France for two weeks today. I'm so excited I can hardly wait. Strict rest at the other end is required. No skiing. :-)

How do I feel physically right now? I'm okay apart from my vision. It's just that I'm a bit out of balance still. When that stops I'll be soooo happy. Everything else is fine, I just need to and will do loose that big tummy of mine.

Down to 8 milligrams on the steroids today....yippee! By the way, today is our day of not talking about it. So, if you call me or have the good fortune to bump into me, then not a word ha ha!

Yesterday was awesome. Let me quickly talk you through it. Cooked breakfast, walk with Dino in the woods, soup for lunch, snooze in the avo, went to see Abbie, Claire and Ruth at the Bright Star in Peters Green (which was brilliant and so good to to catch up on the news), snooze again then roast beef and yorkshire pudding then another snooze in fron of Ski Sunday. How could it get much better?!

I', still not with my laptop with the photos but promise to post some more asap!

Love

Ali

Bonsoir everyone!

Well, today was much better thanks.  We had a good talk about things and decided to try and just go ahead with open minds.  It's tough because we don't know what the future holds.  I know that none of us do but we know that my future is certain.  It's tough for Jeanette and me.  We're not sure about a number of things.  Please don't think that we're sad, we'll work though things and come out the other end one way or another.  I think that we have a sort of holiday for the next 8 weeks because we simply can't do anything - I just have to get better and quick!

On Monday we're having a day when we are not speaking about my illness at all.  That should be good actually because I'm a bit tired of it and I'm sure everyone is.  Arsenal are through in the F.A. Cup so there's a start for the conversation. Ha ha.

Linz, Al, Phoebe and Rufus came round for tea this morning and brought some yummy chocolate cake.  It was good to see Linz especially because of the lovely comments that she posted on the blog - it was nice to see her and thank her for the kind words.  Thanks once again Linz.

Then we went to see Jumbo playing rugby for London Scottish against Old Albanians at St St Albans.  What a great game and Jumbo - I hope your date tonight goes well ha ha.  There is a photo of Jumbo and me but I'm not on my home computer tonight so no photos updated I'm afraid.  I'll do it tomorrow.

Then off to Lower Farm for sleep/dinner/Sleep again.

I feel that it's now that we need a bit of direction before we can get on the straight and narrow.  We'll find a way.  I went to the Brain Tumour UK website last night and read about Grade 2 Glimoas.  The chap that it was about had a Grade 2 but had unfortunately dies since.  Damn!  It doesn't help when you read that.  Thanks though for being so positive Jet and sorry for being down.  Better days are around the corner.  

It was tough at the Rugby being amongst people who could do things I couldn't like run and catch (well, some of them could).  I just want to be me again.......I hope so much.

Love  

Ali

Friday Evening

Bonsoir everyone!

Well, it did come back and get us! I'm tired so we didn't do much today. Still, it's nice to do nothing much! Nearly a 3 hour sleep this afternoon. Talk about Think Shrink - the skin around my torso has started to go like orange peel of which I have reliably been informed is cellulite. Big tummy, neck and cheeks! Think shrink please:-) I know it's only a small thing but it's on my mind!

Steroids - wow. I know they are doing me no end of good but I'm getting tired of the taste in my mouth, the dry mouth at night, the water retention, my face etc. I've got to be super careful about coming off them (2 milligrams per week) otherwise I could be in the slammer again and I don't want to do that before we head back to France!

Insurance. I've been using the British Mountaineering Council Insurance for years and they have been super. I was told yesterday (after a long call) that I can be insured as per normal for everything not to do with my brain tumor. There's a risk! We're going to wait until I'm absolutely ready to go back to France otherwise we don't want any shennanigans at any stage.

Well, Linz and her gang are coming tomorrow so that should be great! We've also been invited to a London Scottish match to watch my good friend Jumbo flounder in the mud....I hope. ha ha

Bit down on the whole - It's getting to me. I guess I want to get better not only quickly but just get better. The radiotherapy, I've been told, will continue to work for 6 - 10 days and act like a normal day of treatment. It's a real hassle standing up but once I'm there it's all systems go!

I've never been a writer and I'm sorry if this doesn't wind like a story. I feel like I have to write what I feel and pop it down. Some days are great, some not. Stay with me and Jeanette, your company is appreciated sometime more than you can believe.

The Grand Essentials for Happiness are:
Something to do
something to love
and something to hope for....


Love

Ali

Bonjour everyone!

We're so excited! I feel fine today and not too tired. I think it's a mental thing as well because I've made a conscious effort today to get up and do things. I've made the tea a couple of times and I made dinner. It's nearly 5pm and I've not been for a sleep yet. Don't worry anyone, the moment I feel tired I have no choice - bed. It's weird, my body just sort of gives in and Says 'Whoa down there Ali Bedtime!'

We've got this far and I feel that with everyone collective help we've overcome the radiotherapy and pretty much beaten it. I'm probably speaking too soon as it will come back and whack me when it wants. I suppose it was always there to help me but oh my, it takes it out of you!

Jeanette and I are now coming to terms with the future. We went for a lovely walk today and talked things through. It was tough actually because we're no nearer to knowing about our future. I know that no-one knows what the future holds but at least everyone else has it roughly planned out. I'm not complaining, I'm just saying that we need a bit of time and a lot more walks to fathom this one. I don't know where I'll be in the next few years which obviously affects Jeanette, Cor, now that's a tough one. We'll battle through but in fact today was harder than we thought it was going to be.
Never mind, we'll fight the good fight.
Love
Ali

Wednesday Evening

Bonjour eveyone.

Well that's it! I feel like it's the last day of summer term! The sun didn't shine today but it certainly did in our little bit of the world. Oh how! I walked out of the hospital and wondered what I could do tomorrow - all those things. Awesome. Massive thanks to Alison who really did look after me over the last 7 weeks. Thank you and good luck Alison.

You wouldn't believe that how many times, in the last couple of years, when we were walking in the alpine meadows high above Annecy or cycling around the lake on a hot summers day, that we looked at each other and said how lucky we were. So many times. Only today did we have a little cry and wish it wasn't me. After all this. We're strong and will continue to fight, with your help, to make sure this goes completely.

When I was first diagnosed I sat down on my own for a bit and had a think about it. I did just accept that I had to get on with it. To be honest there is not a lot else to do. One thing was clear in my mind and that was that some good thing would come to us all as a result of my being ill. It did. I'm bowled over. Thank you all for your support.

So what now?

We carry on until it's gone.

See you tomorrow? I hope so.

Love

Ali

Tuesday Morning

Bonjour everyone!

Linz thank you so much for writing those lovely words. It's almost true to believe but also saved me from writing yesterday so double thanks.

Sorry about last night, I was exhausted. That's what's I'm going to call it now. Tired doesn't seem to merit how I feel at the moment because I could hardly get up the stairs. I slept from 8pm until 8am, still the dry mouth but less sweating. Can't make head nor tail of that but I'm coming down on the steroids so it might make a difference. I'm now on 10 milligrammes of Dexamethasone and no headache which is awesome. This means that we're still going for 10th March off them. then fitness kicks in and no double chin, hamster cheeks, tummy etc. I guess that you gather it means a lot to me?!

I had a thought at the hospital yesterday. I looked around and yes, I'm the youngest by far in the waiting room but I imagined children waiting there and going for treatment (they go to a different hospital) and I think I prefer it the way it is. For the oldies I guess I have done my best to cheer some of them up. I'm going to miss them.

2 treatments to go and to be honest my mask wouldn't last another week because my face is so chubby! It's really tight now, almost too tight. If I was having a few weeks more of treatment I would have to have a new one!

My good friends from BASI (British Association of SnowSports Instructors) came over to Costa to say hello. Sean, Dave, PK and Roz. Thanks for coming it was lovely to see you (particularly in better form than last time Sean!) Thanks.

So, two treatments to go. Thank you so much for the support in counting down. It hasn't been hard, it really has not been a problem. Yes, I've lost a bit of hair, my skin is a bit sore and red, I'm full of radiation, tired, exhausted even, I'm tired of the Finchley Road, the A1, the queue at Costa Coffee in the hospital but at the end of the day MASSIVE thanks go to everyone that has been taking me up and supporting me. They are the ones that had to REALLY put up with the traffic. I just slept!

Mum and Dad, Phillip, Julia, Fat Nick, Paul, Lucinda, Si and of course Jeanette. I always think it's dangerous putting up names because with my brain, in the state it is, will probably have forgotten some key people! If I have I'm sorry and I hope you'll forgive me. Tomorrow It's just me and Jet and then off we go

So, what next? Well, today we see Dr Wilson and with some luck she will give us some dates in the next 2 months to come back and check out that THINK SHRINK has been working. I hope to be able to go to France as soon as I'm ready to recover. Don't worry, the blog will be here everyday for the forseeable future - I'm going to blog piccies of my escape home and the reduction of my hampster cheeks. Stay with me won't you? I still need you to THINK SRINK for the next 2 months!
2 to go.
Love
Ali

Monday Evening - 2 to go

Hi,

Ali is again very tired today so has asked me post this great note from Linz which was left today.

The start of the next chapter

The man knows he is coming to the end of this stage, the road tunnel is getting lighter and he can see the daylight at the tunnel exit. He was so excited, but now he feels nervous and he slows his bike down, gets off and starts to walk. He stops for a moment and looks back up the tunnel, the darkness is familiar now, he has seen and heard things that were beyond his wildest imagining but they have become common place. The sunlit world beyond is not so easy to reenter….

As he gets to the mouth of the tunnel the sun feels warm on his face and the road is solid beneath his feet. He squints his eyes, but they adjust quickly to the light, so he sets one foot in front of the other and walks along the road. He is joined by friends, someone takes his bike, another takes his hand. They walk along together, slowly at first, enjoying the sun and the fresh air.

When he turns to look back the tunnel is far behind him, he didn’t realise he had come such a long way. He picks up the pace, and listens to the everyday conversations that flow around him. He has rejoined his old life without even noticing. An old friend who he hasn’t seen for a while calls out to him ‘Hey Ali, I haven’t seen you around, how are you doing?’ The man smiles, there is no need to tell his friend of the darkness he has left behind, so he simply says ‘I’m ok, I really am ok, let’s get together soon.’ And he walks on….

Thanks Linz, I think you'll give J.K.R a run for her money!!!!

From all those close to Ali, both family and friends, we would like to thank everyone for their continued support for Ali over the last few months. As you all know it's been a roller coaster of a journey thus far, but it's been made infinitely easier through the love and support we have all received. We thank you from the bottom of our hearts.

Live Strong

Si

Sunday Evening

Bonsoir tout le monde!

I just had to get on the blog because today was great and I wanted you to know about it. It's 8pm and I'm in bed absolutely exhausted. I was up at 4am doing bits and bobs and I felt fine - my eyes were not scwiffy and I wondered if it might be okay for the day. Si came and picked me up and took me over to the bungalow to have breakkie with Jo and the boys. I did but fell asleep on the sofa for an hour. Back over to mum and dads to meet Franny and Rachel who came down from Hinckly to meet me. I felt the best I felt since before everything.

I'm so excited that little things are happening slowly, so slowly that I am returning to me. I hope.

Rachel, Fran and I went out for lunch and started planning about New Generations 10th birthday surf trip to Croyde Bay on 11/12/13th Sept this year. Wanna come? I'm so excited that we're talking about it. Lunch was awesome and Phil and Diana came and joined us and we were all on top form. I felt so much better.

Exhaustion or some kind of massive tiredness hit me then (it's okay we had already sorted out the bill, I can't use it as an excuse yet but watch out....I might!) Had to br driven home from he Bull in Wheathampstead. I could hardly get up the stairs! Slept like a baby until 8pm. I still can't get out of bed but I will because mum and dad have recorded Ski Sunday YIPPEE!!!!!

Love

Ali

Sunday Morning

Bonjour everyone!

Wow, in fact yesterday was awesome! My eyes didn't go scwiffy for some reason, I'm just a bit dizzy and giddy and out of balance. Other than that I'm cool. I do feel like an invalid at the moment and yesterday was the first time I was in a big crowd so it made things worse a bit but I didn't care because.....

My good friend John (who is the Academy manager at Fulham Football Club) was kind enough to get tickets for Nick, Chris and myself for the Arsenal match. Awesome! What a great day - thank you so much John. Those meat pies were lovely a well. Thanks for driving Chris and good to see you Nick!
Sometimes I don't know what to write. Like now. Writing is good for me, it just kind of lets me get things off my chest, it let's you know what is going on and hopefully we're all happy and informed.
Apparently it's quite common to get a little bit depressed after treatment ends. Mmmmm. Not sure about that one but to be honest the girls at the hospital have been spot with what is happening on so I'm not discounting anything now. I'm going to be really happy though!
I'm feeling tired but good!
Love
Ali

Saturday Morning - Good Luck Agnes!

Bonjour everyone!

I thoughts I'd get up early before my eyes go a bit scwiffy and do the blog because it is 'Scwiffy Saturday'

Yesterday was great. It was my dad's 65th birthday! Cor, well done dad. Lucinda picked me up and zoomed us up to the Royal Free coffee shop for hot chocolate with Si. Waited nearly an hour because......'machine are running late again' It didn't matter because 4 treatments quickly became 3 and we were out of there. Bit sad in a way because a lovely old lady called Agnes left today and that was her last treatment. She wears a wig in a brilliant style - looks really great. She said goodbye and goodluck and we wished her the same. She walked out of our lives. I wish her luck. In the waiting room there is a group of about 15 people who I see every day. We have started to bond and you say hello or just smile. We are a group of people who know what each other is going through. It's quite comforting in a way. I can't wait to say goodbye and goodluck to them on Wednesday next week. Very exciting.


Thanks for the packed lunch Julia and Lucinda. It nearly takes me the whole trip home to eat it but by golly it's great. Marmite and cucumber sandwhiches mmmmmmm. TURKISH DELIGHT AGAIN! MMMMMMMM

Home and bed. Jo, Si and the boys came round for a bithday tea party for dad. Charlie is adept at blowing our candles but Archie is learning and more dribble comes out than air. I got a clean piece ha ha.

Big day today. Family coming round in the morning then we're going to try and see the Fulham/Arsenal match with Nick, Chris and my friend John. Can't wait.

Love

Ali

ps. You might notice that there are no more recent photos of me. I've got hampster cheeks, a big tummy, red, bald head and I'm sure there is other stuff. Jeanette still loves me. Whew. Old piccies will have to do ok?

Friday Morning

Bonjour everyone!



4 days of radiotherapy to go! Yippee. I'm planning the 'Great Escape' with Phil as I write. I just can't wait to get home. Don't worry, if you're ever bored then no probs because I aim to keep the blog going for sometime with some recent photos and so on. I hope it goes like this....

Finish radiotherapy next Wednesday. Rest for a couple of weeks and see how we go. When I feel better then head back to France for some more rest. I'm under strict orders not to do anything and believe me, I can't or won't. After 8 weeks I need to go and have a scan and meeting with Dr Wilson and the gang. That's when we find out that everything is going to be fine. If not we fight the next fight....together? I hope so. I've taken so much positiveness and happiness from the blog that it's kept me going in a great way. I'm glad that you're on the journey with me. Makes me feel much better knowing that my friends and family are with me. Thank you.

Thanks for the lift up Dad (sorry for eating all the jelly babies) and sorry I nearly missed you in the hospital Phil, but great to see you.
Now, I have been trying visualisation on the BuzzyMachine and mostly it's been going well until I pictured Dicky and Nick sitting on the big guns pounding away at Mr Tumor. I don't know if laughing is good but I can't concentrate on that one anymore!
I need a bit of help from all of you for my last 4 zappings. Sorry it's a bit late but I've been doing fine for visualisation until now.
My favourite is Rachel's - imagine the old Space Invaders game in a circle around Mr T, pounding away, shooting, making him smaller.
My last one will be everyone of you holding hands in a ring and running in together jumping on the nasty thing. That should do it.

Physically? I'm okay but my eyes are a bit scwiffy...again. I thought that was the tiredness but it seems to hang in there regardless. I'm struggling typing (my lovely assistant, Jeanette will correct for me... :-) but hopefully that will sort itself out. I just want to be back to normal. Thats it. It's been a few months now but I just want to be bacl to normal. I do want to ski, cycle, and run. When I do you'll all know about it....photos, blog, the lot. Never fear!

Alison, my lovely assistant/nurse got engagd on Monday so you have to join me in congratulating her and Dave...awesome! Thanks for not sticking in the needle too hard yesterday and we'll take a wager on my cholesterol?

Love

Ali