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.

Five days after chemo

Barts was a building site and as usual a bit airless and overheated. Asha stripped off and started applying liberal quantities of foot massage cream to various exposed parts of her mummy. She even got to hear ba-boom through a REAL stethoscope "just one ba-boom" she assured us, not two or three, just one heartbeat! Needless to say the foot massage was twin Sue's brainwave, who has been here for the few days. Utterly brilliant and covering all the bases - housework, kids, heart to hearts and so much else. When she went on Monday Ali felt quite wobbly.

Two units of blood went in after the three chemo chemicals and it was all done by the early hours of Saturday morning. Any immediate side effects seemed to be dealt with when they eventually got the anti-sickness drug authorised. Someone had forgotten to get a doctor to prescribe it so it was a horribly long two hours with Ali waiting and retching at midnight in full view of all the ward.

5 days later and Ali is feeling frustratingly routinely wiped. No amount of horizontal semi sleeping through the day will energise her. Except yesterday she got up and felt her old self. Then she crashed again with a mix of repeated retching (but nothing actually comes out of her stomach) sweats and ache around her torso.

The children are doing well and keep us focused on the"really important" details of life. Asha is counting down the days to next wednesday when she gets to wear her navy blue school clothes (well nursery actually - but "big school nursery") and so transforms into a school girl. Kirin is surrounded by motherly toddler girls who smother him with affection for two days each week at a parents co-op all day nursery - so he's high!

And me ? (Chris!) - I have even been able to get some community work done as an experiment in "what does it feel like to be doing phone calls which aren't just phone calls to arrange childcare or to talk about... arranging childcare...!"

Me being able to reappear in the Office is all because we are now being carried through the weeks by this remarkable bunch of people in our community which is what makes "urban village" life a surprisingly beautiful and intensely moving experience. We are being cooked for, we are being given time away from our kids so we can be more ready for their full-on energies when they do happen to us at the end of a day! Only shame is that so far most of our time away from the kids Ali has been flat on her back on the bed or sofas (today briefly- on grassy Springfield Park).

Where do we go from here? bone scan on Monday - 5 hours at Barts. Then pre-chemo blood samples given Wednesday then chemo part two on friday - this time we have an appointment time and a chair - no bed. It's supposed to need only a few hours.

It's hard. Ali's week has been a bit of a blur and negotiating the stairs one of the bigger challenges of a day.

But Nell turned up this morning - (87 years tomorrow - happy birthday!) - just to pray and sing a few old fashioned hymns...and that brought us close to God. (It also made us reactivate the other bit of the blogsite - "put your hands together" - see right hand column) ...So life is good - "under the mercy".

A bit about Bruges and trying not to be bourgeois

We got back from Bruges on Tues pm. It was both wonderful and quite hard as my ailments couldn't help to dominate. The home of chocolate and Belgium beer and basically I was having none of either! A combination of nausea, diarrhoea, back ache, lethargy, and swallowing problems/regurge are hard to play down.

The luxury of three completely free-from-kids days meant that Chris and I talked lots and crashed whenever we (ok - I, mainly) needed to. I think Chris would have put me on his shoulders and walked me around the beautiful city if I had been Asha's size, so we did the next best thing and tandemed it! Now there's a first! In my opinion, as a cyclist, you need to be in a VERY long term relationship to pull off that one! The person at the back has handles and pedals as you might expect, but just no ability to steer and no brakes... Utter trust and surrender to the person at the front, to keep you both alive!

We did feel slightly like everyone else we saw was a Brit, on the same Times Eurostar offer as we were, but just a tad older than us. Nothing mattered though because this trip wasn't really about travelling - it was about talking about the journey. Basically we did a fair bit of reminiscing. We couldnt help admitting how much of the detail of the last 5, 10, 15 years we had forgotten and how much of the detail of this last year - all the good things - were in one way or another, related to my diagnosis.


I know blogs aren't really the place for this sort of stuff, but I came away from Bruges overwelmed with how much gratitude I felt for Chris. The harsh truth of these last months is that I have often found energy for others and not for Chris. Positive and 'together' as I step out of the door and grumpy as hell, self-aborbed, lethargic and resentful at home. I wouldn't like to be living with me just now...

Which brings me to the next thing... From the moment I was diagnosed, people have suggested we think about a nanny or an au pair. Someone to help take the inevitable strain that the disease would put on us. Now for all that Hackney is inner city and deprived, it has its fair share of 'Hackney bourgeois'. You meet plenty of nannies down at the swings. I was definitely NOT going to go down that route. Chris and I were far too creative for that, we had our community and our church and anyway, au pairs were for people who worked, and we're hardly full-on working types and especially not now.


However it didn't take much of a nose-dive in my health, for Chris and I to find ourselves discussing the possibility of a 'live-in helper'. Now, the 'live-in' bit of course is no problem for us. David and Eden have moved out (apart from the times we persuade them to come back and stay!) and the house is big enough. It's not the idea that someone will take on our kids and become a very crucial person in their lives that I have a problem with - I had nannies until I was 10 (because that was the expatriate thing to do) and I adored them all I think.

Maybe one of my concerns is the 'employee' bit. I have never been good with builders or decorators and the cleaner relationship is all done through Chris. I can't imagine in my wildest dreams wanting to move into a family to look after two small, demanding children and negotiate a relationship with two adults exhibiting clear signs of stress! I struggle to imagine any enjoyment or job statisfaction in that, although I have been convinced by others that there are people out there who would genuinely relish that sort of a challenge!


The other thing I had to get my head around was that this person might not have to be instead of our church and community but that they would probably have to be willing to imagine becoming part of our thing here.

Might sound ridiculous, but if you know of someone that might be free for the next 6 months or so and might 'enjoy' helping us out, I know not to underestimate the power of this particular network. Not to mention the power of God to bring together people's needs and aspirations, linking together different lives in the most uncanny ways. I certainly think there is scope here for the old Creator to be a bit creative with our lives casualties and our co-dependency and vulnerability as humans.

We saw Sarah my Consultant on Thursday as a sort of re-run of the the previous week's consultation. Our discussion was conclusive! What's the point in feeling crap most days from cancer when you could be doing chemo, feeling a bit crap, but at least fighting the cancer! I told her that temperamentally I was probably much better on the offensive than on the defensive and that right now I just felt a bit 'got at' physically.

The chemo regime is a tough one - in every other Friday for a day's treatment (three drugs intravenously, only one of which my body handled before) for possibily as long as 6 months if its working.

I start this Friday (15th) and Sue's coming over from Amsterdam on Thursday. We agreed she's over to distract me as much as anything else. We well know though that the extra pair of hands around chemo is crucial, so I'll be lining up various friends and family to help us - for fortnightly visits !!

Nine old mates from Rectory Road Church turned up at one of our little Tuesday night prayers recently and I felt like the world was possible after the singing and the praying died away. Chris was in Cambridge so he missed out. If ayone's in Hackney this Tuesday (12th) at 9.30pm, it'd be great to do a bit of mountain manouvering!

Keep holding us, in whatever way you do that, your love and your reading is a powerful part of the healing for us in all this.

Thank you, as ever. Hope you like the pic's from our time in France

Shortest Ali-entry in living history

I'm supposed to be down the road at Neil and Lynda's for some delicious food (some things in life are absolute certainties!)but in fact I'm still packing to leave tomorrow for 3 days in Brugges with Chris, to celebrate our 14th wedding anniversary. In fact I'm obviously doing neither because I need to let you guys know the outcome of our consultation yesterday!

Cancer bla bla bla

I'm sorry I'd MUCH rather be telling you about our 2 weeks in France or our 4 days at Greenbelt Festival, but I guess you want to know the cancer stuff too.

I told them that I was not feeling great - nothing I can't live with but general aches and pains. We agreed to hold out for a month, re-scan at the end of Sept with a view to starting chemo in October. Regime sounds a bit more gruelling than first time round, but hey, no-one ever really knows how you're going to respond until you get there, so I'm not going to dread the unknown.

Now back to the packing. Thanks as ever for reading. And those of you near enough to call on, we're probably going to need to dump babes on a regular basis as I need to get my head down for a couple of hours most days, and (as anyone whose tried it knows) that's a hard one to get past a 1 and 3 year old!

To be continued when I'm not hungry and undressed...