Two additions to the household

I keep reading and re-reading the comments from last time. I love them all so much (even the ones that tantalizingly don't tell me who they are from!). Guys - what can I say? Thank you for equipping me for all this.

There are perhaps moments in this journey that feel very little to do with me and more to do with something that is being gifted to me. This is one of those moments. The sort of joy and resolve I feel now seems to me to be less to do with 'doing this right' and more about reaching a place that you thought might be scarey, only to realise you recognise it and it all feels very familiar and very safe. Chris and I feel the same. I think this has a lot to do with the fact that we've talked about a fair bit ahead of time and that I'm feeling a bit better evey day. Progress is painfully slow, but eveyday I eat a bit more and walk a bit and build up my strength.

So, two additions to our household, both I am sure are destined to improve my health. Firstly, The Stent, sounds like a movie title, rather than a bit of meshed tube inserted down my throat, under local anaesthetic on Tuesday morning. It certainly makes its presence felt, with an occasional spasm (like an acute stitch that lasts for about a minute) and I was on some pertty strong painkillers for the first few days. The greatest, most glorious moment is downing half a pint of water or my mum's homemade lemonade without fear of that 'moment' - the 'moment' I mean is when a gulp hits an obstruction and sends back the message 'hurt Ali, so that she doesn't do that again!' I just don't get that anymore. It's fantastic. Or at least it will be even better when my body finally gives up fighting the foreign object and welcomes it open-armed as part of my 'new look interior'.

At this point I could become extremely boring and need to tell you that I had some scrambled egg and bacon (one egg and half a rash); two supplementary meal drinks; some soup; some fish kedgeree and some chocolate yesterday. I am determined that the woman that never gave a second thought to what she might eat or when, doesn't become food obsessed. However it's hard when I'm supposed to be eating something every two hours!

On to more interesting things - this is Jessie, who has come to us hot foot from Vietnam, via Hendon (where she has some family) on high recommendation of a mutual friend. Being as she's only 18, has very little experience of babies and young ones and really only wanted to stay a couple of months(!!) it was slightly amazing Chris and I still said, yes please. However we did and she's become our total hero. We're now starting week three and anyone who can decipher an English shopping list; cook a fish pie; work out my laundry fetishes and travel to the moon with the kids in an indoor tent, can stay for as long as they like. It now even looks as though she might stay till December! Jessie has an amazing way of dealing with the Asha tantrum (of which there have been a few). She is willing to take it on the chin without becoming angry and then talk to us parents about why she thought it happened. If you're a parent you know what an indulgence that is - the debrief afterwards. We keep telling her that it's a compliment that Asha obviously feels safe enough with her to throw the odd paddy just for Jessie.

Tomorrow I'm back in the Homerton for 3units of blood. I'll keep you posted as to how we get on, as and when I get inspired. Thanks for reading AND especially for Commenting.

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.

Ali gets home

Today (Friday) we are expecting Barts to let Ali home - a bit of quiet (children permitting!) recuperation, normality, tlc.... more news soon.

Still in hospital - 13 days and counting....

Well, we knew that Ali being admitted on Boxing Day was running the risk of losing her to Barts for a considerable time... she was running a very high temperature and lots of diarrhoea...and we had no choice but to get her in. Even so it feels so tough on her, the children and all of us, that nearly two weeks later she is still there. The news is that she is still down with a diarrhoea bug that antibiotics are not really shifting. The frequency of the diarrhoea has reduced, but not enough to get her discharged. She is having big problems swallowing and holding down any food. That means she is losing a lot of weight. Asha and Kirin are getting very occasional brief visits because of the hospital's strict infection control policy (Ali is in a side room). So it feels a bit bleak. No chemotherapy has been administered since November 29th and none is likely to be given to her until after Ali has had a spell at home, with the bug erradicated, after a few days to "normalise"....Which may be a while yet. In the meantime it feels that possibly, may be, the cancer tumours are growing back again (which they will check over the next few days)...that's not surprising I suppose... Ali is being very very brave and she is full of life - brimful - shining out of her eyes. So we are not as a family feeling defeated.

Thankfully my (that's me Chris's) flu and ear infection/burst ear drum are now sorted. David and Ann took Kirin for a 4 day trip to Norfolk. Friends Lucy and Andrew took Asha on a fantastic holiday to Oxfordshire. Ali's twin Sue came over (we never did get that flight to Amsterdam) and so Sue and me and Ali were able to spend long hours together at Barts over the last few days.