a few words and pictures posted by a few people to keep a few other people up to date with ali

Wednesday, September 27, 2006

Someone turned the lights on again!



It's me back again! I don't just mean you've got me blogging again, after a guest performance by the 'man behind the scenes'. No I mean it's ME - I feel like I just got ME back again!

I saw registrar Peter yesterday (the new Justin, working under Sarah my consultant) and tried to tell him both, how bad I had felt last week and now, how well I felt in comparison. I feel more like the Ali before France and Greeenbelt and Bruges, the Ali of earlier this summer.

I asked him whether I could dare to believe this was already the effect of the first chemo treatment, and he said (in that wonderful cautious medical way) - well what we know about your cancer is that it is chemo-sensitive from before so yes, I think that's what we can assume is happening here.

Well, praise the flippin' Lord is what I say!!

The results from the bone scan on Monday is that it's not in my bones, so that's a relief. Interestingly though, the results from the CT Scan I did just before the 1st chemo, showed that my whole liver was a cancer mass. No wonder I was feeling so lousy and no doubt we're doing the right thing by kicking in with the chemo just now.

Monday this week (day 10) was the first day I felt good. Helen an old friend had been willing to accompany me to Barts. The radioactive injection they give you 3hrs before was no problem and then we went off for an extremely long, extremely delicious lunch break at Carluccio's. This posh Italian cafe has become quite significant to me and Chris as it's where we've chewed over several bits of life altering news...

With Helen on that day I just couldn't help reflecting that here I was again facing what should be (by all accounts) a 'hard chapter' of my life, but it just didn't really feel like that. There was too much to feel grateful for, sitting down pain free, chatting to a friend, enjoying the first time in ages something that felt like an appetite. Then to cap it all, we head back to Barts where I get offered that chance to lie down and 'not move' for about 1/2hr. A siesta! How civilised and Italian can you get!?

Tuesday morning I'm out the house by 10am biking through London Fields in the sunshine to meet Jo for a coffee and a celebratory kids-free natter. Jo is one of the many people who are holding things together for Chris and I. Jo and little Oscar have offered us numerous Asha pick up and play slots, sometimes throw in the brother too, plus tea and bathtime if I'm having a particularly hard day. That morning kids were not part of the occasion. Phil (whose 'with Gabi' and staying with us at the moment) had been left playing cars with Kirin who was due to be picked up by Esther and little Ihanie for a day of antics with his new adopted 'older brother'.

For once there was something bigger than mummy being poorly in our household. Asha started at Millfields Community School Nursery on Wednesday! Even I felt butterflies in my tummy when mum turned up last Saturday with those long white socks (with the holes that make a pattern all the way up, that has to be straight - I confess I know where Asha gets that from) and a small navy blue pleated shirt and a top that she stitched the all-important badge onto.

Proud parent moment when she can hardly wait for her dad to leave and and it's Asha that answers both of the first two questions Ashraf (her fab new teacher) asks all the kids during the 'circle time'.

As I think about tomorrow I do find it slightly hard to believe I'm going to have to do all my living in five day chunks just before the next chemo. It certainly makes you want to pack in the important things. Chris and I are going to go to Kandinsky at Tate Modern before the chemo at Barts because time is certainly to be savoured and lived while we can! I asked Chris yesterday whether it was nice having me pulling my weight again (I'd just done bath time and bed on my own as he cooked a sausage stew for 50 because it's the monthly Community Meal tonight) and he said he couldn't help thinking that it all felt a bit too brief.

My hope, going into chemo round two, is that the cancer was making me feel so crap before and that therefore I was less able to cope with the treatment's side effects. I'm daring to hope for these next two weeks, the side effects won't be as bad, or last as long. We'll have to wait and see.

My final reflection is much more sober and is just about how closely our bodies and emotions are linked. What I mean, is how effectively we can totally lose perspective, joy, humour, sensitivity to others needs etc, if and when we are fighting with our own physical frailty. Last week has to go down as the one when I was hardest and most hurtful to my mum and dad since this whole thing kicked off. Two people who are hurting most in all this and who I least want to load more onto. There have been very few moments for any of us where we have genuinely felt this is too, too difficult - but Saturday was one of those moments. Being what we all want to be, being what we believe we can be to each other, and then being crushed by the enormity of our own needs and feelings.

Mum and dad, Sue, Chris I love you. I keep trying to find ways of saying this without it sounding false or forced but I really wouldn't swop places with any of you. All our paths are steep and hard but yours more than mine. I love you and I'm sorry this wretched disease happened and this is what is being asked of all of us.

6 Comments:

Anonymous Anonymous said...

Dear Ali,

You did a wonderful job of communicating your profound respect and care and love for your parents, Sue and Chris. What a blessed example you are to me. I'm listening to the Spirit of Jesus, the healer, counselor, prince of peace, comforter as I pray for you often. Love, MaryTN

9:42 pm

 
Anonymous Anonymous said...

Dear Ali

So pleased to hear you are feeling better and hoping the next round is easier for you all.

It really is a small world OUR local primary is also a Millfields - if the name is anything to go by Asha will have a lovely time - can't keep Lydia away from the place. If only there was a Hunsley down South!!

Thinking of you often.

Lots of Love

Sue K

5:20 pm

 
Anonymous Anonymous said...

Hi Ali
What a blog! Joy and pain (physical and relational) and growth and newness (asha making her way in the world) all combined together--very moved in my heart because it seems to me to be real real life. LIFE in its fullness--strangely.An expresso rather than a latte version of life if you will forgive my metaphor!Its at times like this that I experience God---not the up in the clouds version I sometimes have in my mind--but the right here and now beside me--inside me God of love ,grace and mercy. I pray thats the God whom you will encounter Ali day by day--after all we can only live today!!
Excuse the rambling--but I find myself very touched by your experience of life at the moment.
Praying for you my dear Ali
love Stefan

3:30 pm

 
Anonymous Anonymous said...

You hang on in there dolly, this world is a better place for people like you! How gorgeous does Asha look in her school uniform, it´s such a proud mum (and Dad of course!)moment, sit back and enjoy. I´m so happy to read you are feeling more ´Ali´, and the lights are on again for you, wish I could be there for day in London Fields with you. I´m sending you much sunshine from Mallorca.
Amanda & Madison x

10:28 pm

 
Anonymous Anonymous said...

Dear Ali and Chris

There's a first for everything and I don't remember seeing "Praise the flippin' Lord" anywhere before, but we certainly say amen to it and are 100 % sure he likes the epithet!
Hope you enjoyed Kandinsky: I discovered him for first time in an exhibition in Charente France 5 years ago - and now "Several Circles" features in my favourite tie (bought at Guggenheim museum).

Loads of love Johngee and Gwyn

6:05 pm

 
Anonymous Anonymous said...

Dear Ali,

Just to say that I am still reading your blog and praying for you all. I am glad you have had a bit of time feeling better. Thank you for sharing so much.

with love, Fiona M

7:53 pm

 

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