Facing the future with no obvious next move
I sat in the CT Scanning Department at Barts last week reading a very old magazine. '10 easy ways to lose weight'... I'm desperate to write that article: 'Get Skinny Get Cancer'. Life has such irony, when I think of my endless dieting through my adolesence and twenties. (The longest lasting and most successful one I remember was the three pieces of fruit for lunch, every day for a whole term during my sixth form!) Well women - bring on those plump thighs, belly over-hangs and huge bums! Health is what we want - not hankering after a different 'us'.
Whilst the diarrhoea raged on and I tried my best to enjoy the peace and quiet of my side room, swallowing food, any food and then drink too, became increasingly difficult. There is something particularly hard about physically rejecting something that emotionally you know is your only path to recovery. My particular bug ('Chlostridium difficile') brings with it vomiting but I sort of knew my trouble was mechanical. Things were getting stuck, which could mean only one thing, the tumour in my tummy was obstructing my oesophogus. I had some investigations while I was in and on Friday (day I left) we got the full picture.
From my last (very encouraging) scan result to this one, they can see considerable regrowth. So much so, that Sarah my Consultant isn't willing for me to restart the next three months of gruelling treatment for, what they now know, has little to offer in terms of long term benefit. They clearly don't have an obvious third card up their sleeves. They want Chris and I to go down to the Royal Marsden to talk to the guys in the Research Unit about whether there's anything very exciting for me. I'm pretty wise to what it might mean to be in a clinical trial, but if it's a positive next move I'm up for a look. Sarah's lot at Barts will take me back and offer me something if The Marsden draws a blank, but noone's pretending that's ever so hopeful.
So on my return there are a few things I need to do. Firstly enjoy Asha and Kirin! There is something so amazing about being a mum - you disappear for nearly three weeks, you do nothing to ensure their comfort or happiness in that time, but you walk through the door and suddenly you are top of the pecking order again, you are 'MUMMY!'
Clearly I need to put some weight on. One day next week I'll got into the the Homerton for the insertion of a 'stent'. This is basically a little flexible plastic tube that will hopefully help my food get past the obstruction. I also need to re-train my horribly wasted muscles. It's incredible how quickly a bed based existence can render you completely weak physically.
So that's all the information but what about the emotional stuff. Well, prior to now I had reacted badly to any suggestion of those liquid meal drinks, but last week I was embracing them like they were my best friend. It's amazing how frightened you can get when you know you can't really eat anything. In the same way, sometimes you just need a bit of time to get you to the next stage in the battle. Our period of enforced separation and poorliness had been enormously significant for Chris and I. Once after 10 whole days we were allowed to see each other, we had such good chats in those precious slow hospital days. On Friday night once home, Chris asked me 'are you a bit low?' I said yes. He said your dad looks really sad too - I didn't want to say 'that's how he normally looks' - because this time the reality was true. We sat later, all around the double bed upstairs with our Chinese take-out and had a chat and a pray. I sensed that today sadness was allowed but with the dawn would come renewed vigour. And I wasn't wrong.
Thanks for reading and your continued support and love.

39 Comments:
Ali you do not know me but I want you to know your honesty before God and others challenges me so much. I have no quick answers or clever comments I will continue to pray for you and your family. You are an inspiration. Bathe in God's love and knowledge that He is with you and those you love no matter what.
8:01 am
My Dearest Ali, I can't pretend to even come close to imagining how life must be right now for you but your honesty, bravery and humility and as always your beauty shines through on these pages. As you know I have no defined religion but I do believe that God is Love. Know that you are absolutely loved and safe in the knowledge that God is always with you. Chris B x
9:51 am
Ali, I check the blog most days to keep an eye on progress.
I am delighted that you managed to get home after the C.Diff. incident and that you still seem to be keeping positive and relatively upbeat in whct must be increasingly difficult circumstances for you, your family and those who care for you.
Keep it up and take care - Len
10:26 am
Glad to hear your home with Chris and the children. Keep going, keep being beautiful.
12:00 pm
Ali, the beautfiul. thank you for sharing so much. I echo the comment that you are an inspiration to us all. Keep sipping the cartons of sip feed and if they are too yucky remember you can always mix them (my favourite ever patient had brilliant mix of choc ensure with choc icecream and milk: ensure shake stylie). You are all so loved by so very many.
victoria
12:29 pm
This must be so awful for you, we are thinking about you lots and praying lots too.
1:37 pm
Darling girl,
The 'next move' must be exactly what makes sense in the moment for you, Chris, Asher and Kirin. We are praying with you that each day you know God's gentle strength, enough to say, think, feel and do what is important to you now.
Loving you all the time and see you soon.
Manda & Freddie xxxx
2:46 pm
Darling Ali, You shine out of these pages. Keep being you and enjoy those wonderful people around you, especially the little ones. Let those around you give and be content to receive - you have given so much and "to all things there is a season". It was amazing to see even the hospital doctors (and the hospital cleaners!) fall under your spell. Just keep being you - you are very, very special.
Much love and big hugs,
Lucy
3:56 pm
Beloved Ali,
I thank God for you, your and Chris's wonderful integrity, courage and patient endurance. You are much prayed for here at Eckling Grange at all meetings. I love you so much.- Grandpa
4:32 pm
Ali, just wanted you to know that we're still here, reading the blog, and praying. It's so difficult to comprehend the journey that God has asked you, Chris, Asha and Kirin to travel together. He is travelling it with you.
We pray that His love will bind you together as a family, "with cords that cannot be broken". I remember singing that song so often with you back in youth group days. Then as now you are able to bring people together and inspire them. The community that gather via this blog love you and your family so much.
George, Savi, Mica and Anya xxxx
5:56 pm
Ali, I check the blog often to keep up with your progress. We are so glad to hear that you are home and hope that being in the love of your family is the best treatment of all.
I don't know how you do it; you are an inspiration.
Deborah, Paul, Eve, Abigail and Joseph xxxxx
10:09 pm
My lovely colleague Ali, You are so honest and up front, as always. It is such a privilege to share these difficult times with you and everyone who loves you through blogs and comments.
Thinking of you all so much.
Love Sue A
11:02 pm
ditto!!!
Much love
stefan
11:10 pm
Dear Chris and Ali,
I too am often drawn to your blogspot. I'm sure it's the Spirit. You are loved, loved, loved--know that when sadness feels overwhelming. In the middle of the tears say, we will all be loved, always. That includes Chris, Ali, Asha, Kirin, your parents, grandfather (God bless him), siblings, all relatives, friends and colleagues. God knows we need love during this kind of suffering! Love, MaryTN
11:26 pm
I read your blog with admiration and affection, Ali. I hope that you gain much comfort by being with those that love you. Everyone who reads this blog is hoping the very best for you.
Keep being positive.
Sally (G)
8:24 am
Ali, Do you realise the blog has almost had 20,000 hits. That's a lot of friends and a lot of love!!
Much love today and always,
Lucy XXX
9:18 am
lots of love from us down under. Praying for special times with gorgeous children.Thanks so much for sharing. Love to you all, God's peace,
Margie
9:56 am
Thinking of you all so much ...in our thoughts and prayers so often and we send you hugs and more XXXXX
Pip K, Richard, Joe and Isabelle XXX
10:27 am
Dear precious Ali, I'm thinking of you and praying for you. Love Minna.
2:02 pm
Keep going
Keep being strong
We are watching your progress from Mallorca. I feel like I know you better now than in Hackney!
Amanda & Madison x
2:26 pm
Dear Ali, Thank you for all that you share in this blog. It is an extraordinary inspiration. You, Chris, Asha & Kirin are so much in my prayers. With love, Imogen.
5:17 pm
Dearest Ali and Chris, what can we possibly add to all these lovely comments? Nothin except know that we love you and are praying for such beautiful, precious people.
Ali, Andy, Erin and Nia XX
7:18 pm
Gorgeous Ali
So very pleased you are home. Thank you for sharing so much. I read your blog with so much admiration, you are truly inspirational. I think about you so so often
Pip M
10:22 am
Dearest Ali, sending my love and prayers to you, Chris, Asha, Kirin and all your relatives. You are such a great great inspiration of love and courage. Thank you ever so much for sharing your journey with us all. Lots of love Vidya R.
11:11 am
Love you Ali, Thinking and praying for you all as usual, thank you for this blog. Julie in Sheffield
12:02 am
hello lovey,
well you may have lost your behind, but if fat works in a re-distribution sort of way, then it has made it's way over here for sure...
we miss you and Chris and your lovely little ones, thinking and praying lots ofcourse. Glad you are home again.
love Eden & David in New York at the minute
also, another helpful thought... If you need some extra cash, with 20,000 hits like you have you could start selling advertising space...
4:34 am
Dear Ali, sorry to hear you had such a rough time but happy that you have managed to overcome it. thinking of you always and admiring your determination to build up that strength, with God all things are possible.
best wishes E
1:51 pm
You, Chris, Asha & Kirin are in my prayers. What a beautiful family! Wish I could be closer to do something tangible for you and your Mum & Dad but all of you are never far from my thoughts.
Love, Merle
7:25 pm
Thankyou for sharing your "life in all it's fullness" with us, we will go on standing with you are sharing about our amazing friend.
Mark Liane Jonah Ethan & Miriam
10:17 pm
Praying for you and your family and thinking of you often. C Diff is a real stinker - you could have managed without that!
Take care and God Bless
11:49 pm
Dear Ali, love the photo with your doctor. Now that I am getting old I am constantly aware that doctors are getting younger !! Have taken a copy of the picture and pinned it on the prayer board. My thoughts and prayers for you all continue, strenghten by God. Some wonderful comments over the past few blogs I hope they give you support and encouragement. My love Portia.
2:46 pm
Dear Ali,Chris, Asha and Kirin,
As Mary TN said, you are loved, loved, loved. And you are awesome, even though doubtless you may not always feel like it. We are thinking of you and praying for you. Thank you for your honesty and willingness to share yourselves. How precious you are.
Love, and wondering if I can help with childcare, Cathy, and Andrew, Natasha and Aidan x
9:50 pm
Dearest Ali,
Your faith and spirit continue to shine out as an inspiration to us all. Our thoughts and prayers are with you, Chris, Asha, Kirin and all your family.
Keep resting in His love,
Sue H and your friends at Wood Green Mennonite Church
11:51 am
I will continue to pray for you, Chris,the children and your family.
I do not have the answer, but I do know we have a loving, merciful Father in heaven who has you in His hands.May the peace of God that passeth all understanding keep you in the knowledge and love of God.
12:49 pm
Hello Ali,
We are friends of Sue and Mark's. Just wanted you to know we think of you very often here in Paris.
Lots of love
Silvia & Chris
2:26 pm
Dear Ali,
Lots of love from Ana, Maja and Jens! I hope we can see you soon.
9:27 am
Dear Ali,
Having read your blog I have to add my comments to those already made, admiring your ability to cope against such rotten circumstances that you find yourself in. You are an amazing woman and I am very impressed at how your belief and religious faith has helped you throughout your illness. Chris and the children look a complete delight and it must be wonderful to have such commitment and support from all your close family and friends. Not being of a religious persuasion, I cannot join in with the prayers as suggested, but in my own way, I am sending lots of positive thoughts to you and hope that you will come through this, and that your pain and suffering is minimised. I know that Avi joins me in wishing you an upturn in your health.
All our love and good wishes
Gabby & Avi
4:34 pm
My Dearest Ali,
Y'know how we all look for 'meaning' in suffering? well, you can be cheered that yours has directly forced me to learn what a blog is and how to open it! (Black humour, if you didn't recognise it)
So out of bad comes....well..??? Nah, aint worth it, is it? Yes, I am wittering on. But ALWAYS thinking of you with love. Helen
6:08 pm
Dear ALi
Just to say , as so many others have, how much I appreciate your honesty in your blog - I check it often and we are especially thinking of you as you face the uncertainty of the future. You are an amazing family and I feel privileged to be able to share with you and be inspired by you all. With lots and lots of love and prayers for GOd's peace to enfold and embrace you.
Sue, Hamish and boys
11:50 pm
Post a Comment
<< Home