Update at last!!

apologies for the break in communication, but life has been fairly busy with Easter hols, children at home and just generally coping with living.

Caroline
Life has had its ups and downs recently. The week after my visit with the consultant everything went down hill on the eating front. I lost 3kg in one week and just couldn't swallow much at all, even soup and milkshake wouldn't go down! I became fairly worried about this and after a few attempts finally tracked down my dietician at St Thomas' who was wonderful. She said I was doing all the right things, pureeing everything down etc and basically starting from scratch again. Apparently the body rebels sometimes and decides its' not going to do it anymore and has a paddy and this is what seems to have happened! Since then I've only lost 1kg last week and none this week so hopefully am stabilising out again. So now I am an unrecognisable size 6 and I feel as though I look like a stick from sideways on. Strangely enough I have never wanted to be less than a size 10 whereas most of my friends say they would love to be this size, funny how life works really isn't it. The dietitian also put me in touch with a CNS (clinical nurse support) as mine had left while I was in hospital. This person is the first point of contact for any concerns or just there to contact if your having a bad day physically or emotionally and want to talk to someone, so that was encouraging too.
On the medical front I am now definitely morphine free, having returned the rest to the chemist, and have tried 2 days without paracetamel aswell, not sure about this one though, I think I am still going to have to take some. Certainly feel much happier not being on morphine though and less pain killers.
Sleeping is still fairly interesting. I sleep most of the night sitting upright still but wake up about 2am and sleep on my side lying down for a couple of hours until this becomes too painful on my thighs and then sit up again for the rest of the night. I'm hoping when I start putting some weight back on to be able to sleep for longer periods lying down.
In myself I can definitely feel a difference; I am very aware of my limitations (and they are very limited) but am feeling stronger in myself, I can walk further each time I go out and set myself a target slightly further to aim for. The milkshakes have lost that foreboding feeling whenever I wake in the morning and have become part of the daily routine. I have discovered they taste better frozen so have some as a desert at night with sauces and fruit like an ice cream. The chocolate one heated up tastes like hot chocolate, so there are ways to make them better which has made life much easier.

Ray
I have managed to get some time off during the Easter break. It was great seeing old friends and chillin' out. I did a day trip to Bristol to talk about Church Army ministry at a theological college. It is always humbling listening to people's life stories and hearing about how God has worked in their lives.
This week I am trying to sort out a communications strategy; handle some applicants for the gap year and preparing for some lectures (with a colleague) at the Church Army College in Sheffield. So I am busy, but mellow.



Nathan
Nathan is off on another scout camp called BNI this weekend, an area competition this time, and he really enjoys them. It's great to see him getting so much pleasure from the challenges it brings and he loves being out door under canvas whatever the weather ( it was minus 2 at Easter at night).
We still have not got the results of his grade 4 trumpet exam yet.
The week starting 8th May is his year 6 SAT's week so it's going to be lots of early nights and fun evenings after camp to keep him calm and relaxed so he can go in and enjoy them.

Bethany
Well what can I say about her that hasn't already been said, she is still full of life and excited about everything. The only thing that she's not so happy about is that I'm 'too bony to have long cuddles with' at the moment and she keeps pointing out where she can feel or see the bones sticking out. Apart from that she seems to be fine and is very excited as it is her class cake sale this week.

All in all the children have coped and are still coping really well, they know it is going to be a long slow process before mum is anything like back to normal but they are very encouraging, talking about next year being able to do things like we used to. It's funny how things you take for granted you suddenly realise you can't do. We were all set for Greenbelt this year and then it dawned on me that if I could only sleep upright I couldn't sleep in a tent, so we had to tell them we may have to cancel and although they were disappointed they understood. It is all a learning curve!

Prayer points
That my body doesn't have another 'rebellion'
That my 'swallow' becomes easier and I can start building up my energy levels and put some weight on.
To be able to keep a positive attitude and not give in when it gets tough.
Nathan's SAT's

To give thanks
We have much to give thanks for, to so many people.
We have received so many gifts, not just presents but others aswell practical, peoples' time, evening meals cooked for the next month and many others that help us through each day.
For the amazing support and care I have felt from everyone at Mustard Seed preschool (my workplace)
And most of all to God for putting all this support network in place and teaching us to rest in Him.