Day 1 after Chemo 2

I am supposed to be feeling at my most poorly - the day after chemo, so I'll be heading to bed like a good girl soonish... but before I do - thought I'd blog a bit of stuff!

Last thing they gave me intravenously yesterday was a couple of units of blood (for you medical lot - haemoglobin down to 9.3 - not too bad, but worth giving me a bit of a boost). The Consultant said we call this 'best claret' and I have to say it's working for me! Also had mum and dad around all day to help and so have eaten well and had 2 naps.

Pinned to a bed for a day at Barts proved to be a great opportunity to catch up on a few years with Manda, my old art school mate and Stefan Chris' mate from Cambridge days. So much for the music and journal and paperbacks I'd taken in!

Chemo is a funny thing, it already feels so 'routine' ...in on the bus, got given the same bed (eventually after an hour or so wait) even got the same nurse again. But there are definite reality check moments. This time it was me in the loo (wee thats rose wine coloured from the chemo) negotiating bald young woman coming out, older very sick looking woman with zimmer frame coming in and me with my drip trolley! Sometimes it really does feel like Faulty Towers Cancer!

Now about the hair...

I think I've just about got there in my head that Bald is Beautiful - most of us women secretly want the chance to be Sinead O'Connor - but losing hair... now that's odd. For two days now Ive been like a moulting cat! I leave hair wherever I sit and on whoever I hug. Very odd. It's still there but thinning. I'll have to keep you all posted. Eden (my house mate) just said when I see people with bald heads I dont think 'cancer' I think there's someone fighting their cancer, doing their life like the rest of us. That'll be me very shortly - or do I mean very baldly - sorry bad joke! Local girls - I might need you to put a date for the 'hat party' in our diaries for next week.

Well, dad has already crashed in the bed behind me so time to blog off I think. Love Ali.

(additions of photos by Lynda the day after Ali wrote this - moulting with the last ever No 38 Routemaster buses down the Narrow Way with Granny Annie and Kirin)

Spirits lifted at Barts Hospital

Ali and Chris went to see the oncologist today. Ali said it was such a positive meeting and described how she felt she could see the load visibly lift from Chris's shoulders. (I asked Chris if this was 'Ali spin' but he conceded that it had been a very helpful conversation).

In good timing for Wednesday's second lot of chemo Sarah (the onco woman) was able to reassure them about the continuing treatment. Now that Ali has done so well on the first lot of chemo she doesn't see any reason why the next doses would make her any more sick or anything. Hair will probably go sometime and over the course of the next 5 lots she might feel generally more tired, but that should be it.

She also said that there was no reason that Ali should have to stay in over night for the next chemo session, even though Ali had been told by the ward that she would definitely have to.

They've been given a definite date for the next scan: Tuesday 6th December which will be followed a week later by a meeting to discuss the results. This means that they have also changed the date of the fourth chemo to December 14th which works much better for them - Ali will be coming out of the 7-10 day 'infectious zone' on 24th and not having another lot until Jan 4th which means no chemo in the Christmas period.

But the most positive thing was the response to Ali's tentative questions around her reducing symptoms - as she really assumed that it couldn't already be having an effect. But Sarah (albeit in a reserved medical way) did say that yes, that would be a very good sign.

Feels almost worth an extra bottle of bubbly.

Few thoughts from Ali

The pressure to be profound...

so I decided to stop trying and just write something - anything.

Firstly about all those cards...

When Chris and I miscarried a little 10week old baby, before Asha, people sent cards. They didnt try to make anything alright, they just said they were sad for us. I remember thinking - blimey I don't know whether I would have known how important doing something like that is! I'm a great 'nearly-card-sender'. Now an awful lot of you have got it together to go to the shops, trawled the hideous ones to find the right one. Get it home try and think of something to say (Chris is most impressed with that part - for the boy whose great with words he's completely thrown by the card challenge) and then, that last but most important bit finding or buying the stamp! Like I said I know what's involved, I aspire to this guys! What you have done for me is completely overwelming. Every morning they arrive - still. Cards from friends near and far, old Swanland youthgroup friends and their mothers! In fact lots of mothers. Cards from work, where colleagues have become friends. Cards from people I hardly know, in fact, one card from someone I don't know, saying that her Church was praying for me! Its incredible. I decided very early on that I would put them all in a file so that they could go in and out of hospital with me. They are my Alternative Medical Notes. And by the way, the emails are just as amazing. I'll be honest it was lots of days after the dreaded email before I sat down and really went through our inbox. The emails were as moving and life-giving as the cards. I emerged from a two hour session blubbing like you do after a beautiful romantic movie where love conquers all and the beautiful people get to kiss each other!

About the Champagne...
I never dreamt! You guys have risen to the challenge. The doorbell will go and I'll think - its a Wednesday! My sister in law Amanda, being a midwife knows about champagne. They got given so much that once they made a champagne punch using 8 bottles - now that's extreme living! Those of us in my household are keen to be educated as we feel set to become experts in the field. Any help via the 'comments' would be great - you know - big bubbles, small bubbles, pink, not pink. We'd hate to be making bucksfizz with the wrong one!

Think I'll stop soon but before I blog off, thought I might do a bit of a Good Moments/Bad Moments for you to feel up to date...

BM: seeing Chris struggle to work out how to live with the shadow of all this.
GM: swimming 30 lengths with my twin making me laugh.
BM: realising my mum's tealoaf (usually my absolute favourite) tastes all wrong in my mouth - its happening with sweet things mainly, I'm even fairly unimpressed with chocolate nowadays.
GM: a turquoise hat in a jiffy bag to go with a jumper and a pair of red linen trousers all perfectly sourced by different friends.

Happy Birthday Dad/Poppa

Oops sorry I forgot! 65 today so sending you love!!

for the pray-ers among you

You may have already spotted a small addition to the blog - a place to Put Your Hands Together (on the right hand side bar). It felt like it would be worth telling everybody about specifics which Ali and Chris would value prayer for. Have a look and continue your conversations with the Almighty (you can jump back to the main site by clicking 'All about Ali' under 'Back to main blog'). They really are very grateful for all your promises of prayer.

deep slumbers

He's beautiful, he's a good eater, he adores his sister but until recently Kirin has not been sleeping as well as you'd like (as babies have a tendency to do). But all that changed a few days ago and for the last 4 nights Kirin has slept 12 hours - yippeeeee! Typically Ali has not had such good sleep the last couple of nights: the second lot of mistletoe has been hard on her with sweaty and disturbed sleep. But she's delighted that Kirin is sleeping well and more sleep for him means more sleep all round in the long run.

After chemo 1

Ali has been trying to rest a bit over the weekend but is generally doing really well after the first lot of chemo. She had a bad headache yesterday but has not been sick and has actually not been 'knocked out' by it as much as she thought she might be. Chris wonders if it might mean they will give her a stronger dose next time, which at the moment they think will be on Wednesday 26th October.

First lot of chemo

Ali went into Barts Hospital today for her first lot of chemo. By 4pm she still hadn't seen a needle so it was a little frustrating but Asha and Chris visited and she got a bit of reading time. Right now (10pm) the thin red line of poison is threading down the tube hopefully doing what it's supposed to do.

The hospital food leaves something to be desired and what with the red stuff probably going to be pumping for hours I think she will opt for doing it in a day next time, rather than give them the opportunity to faff about till late at night!

The registrar said that Ali's cancer is an extremely rare sort and that really they have no idea how it will be affected by the chemo. Ali (characteristically positive) hopes that this means the chemo drugs will actually work better for her than they do on more common forms of stomach cancer.

They have also told her that they have really improved all the anti-sickness stuff they give to cancer patients so there's really no need for her to be vomiting at all - that they should be able to manage that for her, which is just great.

the start

On Wednesday 21st Sept Ali was told she had stomach cancer. This was confirmed within a week as an advanced stage cancer in the stomach, the liver and a lymph node. It is not possible to operate due to the spread.

Needless to say we are all still reeling and finding the right words, or indeed any words at all seems hard. Ali has tried ...

I said to a friend last week - I don't know whether I want this never to have happened. Life just became more focused, more precious, more real. Believe me when I say - it is more of everything.

I feel like I want to wear turquoise and red everyday; that putting on make-up is worth it; that every conversation needs to be honest and lengthy and savoured. I want to do more singing, more swimming, more charity-shop shopping. That Kirin is worth every single full-on face to face, face to tummy cuddle (and there will always be dishwashers to load, calls to make, clothes to fold). That Wednesdays were made for champagne. I want to dance with Asha and not get bored before she does. I want to fill my house with people I love who will all meet each other and in some mysterious way, discover that this truly evil ' EVIL', "works for good for those who love God."

I want more laughs, more tears, more time.

Every day since the 21st (the day they put the camera down my throat) 12 days ago, I wake up and think - is this the day when I'm going to fall down that precipice where the sadness and anger will hit me? Every day I seem to be being held by something that feels much more real than the invisible disease I'm facing. Prayer is a beautiful way of holding on and being held onto.

On Friday I will receive the 1st of 6 treatments of chemotherapy at Barts. We wont know how successful it has been in shrinking the tumours until December when I will be scanned again.


all our love -

Ali and Chris, Asha (2yrs 7mths) and Kirin (6mths)