Well here I am back with my computer on my lap. I will give more details tomorrow.

As you can imagine I am delighted to be home.

I am exhausted but happy.

Much love to you all

Anne xxx

Chloe writing tonight.

MUM IS HOME!! YIPPEEEE She is exhausted, but very glad to be home in her own bed.

Mum had her first lot of dialysis through her new line in her chest this morning. She didnt need the blood transfusion, as her haemoglobin was slightly higher and they thought that the lower level might have been an error.

We havent got a plan about chemo yet but it won't be this week now, as they need to decide which drugs are safe and if they can be given with the dialysis.

I'm so happy to have my mummy home!

The plan is now for Anne to be home on Wednesday. She will have "permanent" lines for the dialysis fitted in her chest today (the ones in her neck were removed after dialysis yesterday), and will have her first dialysis from this line on Wednesday. If all goes well, she can come home. We'll have to arrange out-patient dialysis (3 times a week).

Its possible she will need another blood transfusion before coming home though, as her haemoglobin count has fallen (white cells are fine). She was due to have her second lot of chemo this week, but should see her oncologist today to discuss her treatment.

On a lighter note, Anne is much lighter (and being weighed daily to prove it), so we need to fatten her up, and she needs to see a nutritionist before being discharged. A small part of this weight loss can be attributed to her hair, which is now starting to fall out (though not that noticeable at the moment - until you look at the floor).

Ben visited before school, and Chloe was with Anne all day. Paul visited in the evening, with photos of the garden (Anne's plants are now in bloom), and took a picture of Pauline and Anne, colour coordinated of course.

Anne looking at lot better - no dialysis today, and she was able to go outside (in a wheelchair) and sit in a garden in the shade with Josh, Chloe, Ben and Paul. She also managed roast beef for lunch. Having difficulty keeping her fluid intake down to 750 ml a day though.

The "provisional" biopsy result came back - but didn't say much at all - in fact, it hasn't ruled anything out. But they say that the kidneys can recover completely from this (but it may take 6 months or more, with dialysis as needed), so please pray for a speedy return to normal (and that chemo can continue).

Anne feeling quite poorly this evening - she had quite a lot of fluid on her lungs (removed by dialysis) and a raised temperature (but her temperature fell a little by the time we left). She needs an X-ray to check her lungs, but that may not be for a few hours, so trying to get some sleep now.

Paul here again. Not a lot of change yesterday or today. Anne had a kidney biopsy this morning, which meant that she then had to lie horizontal for 3 hours, which she didn't enjoy. She was going to have a day off dialysis, but had fluid on her lung so they decided to give dialysis again. Chloe was with Anne for most of the day again, and her aunt and uncle from Bexhill came to visit for the afternoon.

Paul here. Anne seems much better today, not been sick (not while I was there anyway), and quite a few visitors - Chloe most of the day, Ben after school, followed by Joy & Adam, then Josh (home for a few days) & Debs, with Chloe and Paul. Apologies if anyone else crept in that I forgot about. Anne is really enjoying having visitors, and looking forward to more this week. She is walking to the door of her ward. She had her second lot of dialysis at midday. Still not sleeping well, but quite nice if thats the main complaint.

Hello all, its Chloe writing tonight.

Mum's kidney function was worse this morning, and the doctors think the most likely cause is the scleroderma (part of mum's autoimmune condition). So they decided to start dialysis this afternoon. Mum had to have a line put in her neck for the blood to go in and out of and then later she was connected to the dialysis machine, named Pauline. We decided the blood looked like strawberry sauce in an icecream machine.

Mum's blood pressure has been better today and she has also been feeling much less sick. She even wanted chocolate this afternoon, a good sign. Mum has been very peaceful today.

It was amazing timing to find out that mum needed dialysis just as church was finishing this morning so they were praying as she was having the line fitted. Thank you for all your prayers and support.

Slight improvement on yesterday, initially thought that they would do dialysis but they really want to do a kidney biopsy, if platelet count and blood pressure would permit this. Platelets are improving, blood pressure about the same (so stronger drugs), kidney function getting worse but not as fast as they feared - so back to wait and see. Lots of theories but nothing clear.

Grateful for the many prayers that are being made.

A day of waiting. No improvement in kidney function (in fact it deteriorated) and blood pressure still high, so Anne was moved to the Kidney Unit at Royal Berks Hospital. Is being given a different drug to try to get blood pressure down, and more tests. Dialysis is an option, but not yet - at the moment they seem to be adopting a wait and see approach. Anne still has headaches and not keeping much food down. Chloe (now home from uni) is getting a crash course in renal treatment!

Things are not going as expected. Another night in hospital. Anne has kidney problems which are causing concern. This could explain her blood pressure (still high). She had an ultrasound test (all clear) and a kidney specialist is coming to see her this evening. Please continue to pray.

2 lots of blood today. Blood pressure slowly falling. Could be home tomorrow if all goes well.

Paul here again. Anne still in hospital. Her blood pressure is still too high, and they wanted to get it down before giving another transfusion. But they have decided to go ahead anyway, and latest reading shows a lower blood pressure. But another night in hospital. On the bright side, breakfast in bed was very nice (not something I want to encourage).

An update from Paul. Anne was very weak overnight, and short of breath. We phoned the hospital first thing and they told her to come in for tests. Her blood count was very low, and so they have given her 2 blood transfusions and have kept her in overnight. She will get 2 more lots of blood tomorrow, then she should be well enough to come home (we hope).

Our thanks to everyone for your continuing support, thoughts and prayers.

Better sleep last night - yippee! Woke 1.30, 3.30, 5.30 but went back to sleep in-between. Last steroid today. Feeling more cheerful this morning and ready for the new week ahead. Reminded again of joy in each day - how easily I loose that. We are looking at contentment at house-group - certainly a good topic for me now.

Friends for coffee today and then my boy home this afternoon - wonderful.

Tomorrow visiting wig lady! Look out for much laughter about this - it has been the topic of many conversations as you can imagine in our house. I have been thinking of a completely new look - as a young girl I wanted long black hair but we have been considering a Marge Simpson look or even some of the England fans had some fetching ones on Saturday evening! Any suggestions gratefully received.

Thinking of you all going off to work/school/uni while I sit here in the comfort of my bed.

Another lovely day with friends today. Although a rather tearful morning- just frustrated with all that I can't do at the moment. I am so breathless that just walking across the room is hard work. Feel rather pathetic!

No sickness and no sickness tablets today - wonderful. Just sore mouth and everything tastes rather odd.

It was Christmas today with our friends as we hadn't seen them since before I was ill last time. It was lovely to catch up and a delight to spend time with their lovely children. I held court and everyone sat around me!

I am hoping to sleep better tonight as I am now on a reduced steroid dose.

Well here I am again. Its 4.30 and I am wide awake. I can hear the birds waking up and its light outside with that sort of strange early morning light. I have slept from 11 - 12.15 and then until 4 hoping that is not it! I cut the steroids today so maybe the sleeping will improve after that. For anyone who has been part of our last journey you will know that I had an awful time with steroids before so I am really grateful that the Dr has given me a half dose and that so far it has been fine apart from the sleep. Thank you for those of you who have been specifically praying about this.

We had a lovely family day yesterday. We laughed a lot and I managed to eat a proper meal. The tablets are keeping the sickness at bay very successfully. My biggest problem is the breathlessness when walking anywhere - hoping when I start taking the iron next week that will help.

I am looking forward to seeing friends today. But not looking forward to my lovely girlie going back to uni. She has exams on Monday and Wednesday and then will be back on Thursday for the summer. Hurrah! Washing hair without her will be an adventure!

My big boy is coming home on Monday for 2 days so that will be lovely.

OK so here I am again at 2.00 in the morning! Having a picnic of shreddies and orange squash. Lovely. The house feels very silent - i wonder how many of my friends who sleep poorly are also awake. You are in my thoughts. I have been thinking of the chemo in my body fighting the cancer cells - me on my horse (or elephant) with my lance conquering the dragon. It is a powerful picture even more so when I have the creator of the universe on my side.

Again praying for those of you with struggles and sadness in your lives. LH I don't know if you read this but you are much in my thoughts and your family. Also SS my battle buddy I love you.

Well first 24 hours done. Just sick first thing but tablets have worked the rest of the day. Eating little and often seems to be the best plan.

So grateful for so many things, wonderful friends and family, fantastic work, great church family, for the internet enabling me to view the world from my lovely sofa bed. But most of all the peace that passes all understanding.

We are making a list of things to do when I am better next year. All ideas greatly accepted. The list is growing. I am also making a thankfulness list as I did last year. This comes to bed with me and reminds me of all that I am grateful for/ looking forward to. It is usually decorated in butterflies.

I had a slow morning followed by coffee and cake with a lovely friend this afternoon. Joy in each day.

I am really looking forward to the weekend - birthday party for Chloe and Joy here. I am sitting back and all is to be done. Kitty coming and we will all watch the football together. Lovely.

Then Sunday we have friends coming for lunch with their children. We are looking forward to catching up with them.

And sunshine what more could we ask for.

Well here I am at 2.30 in the morning - wide awake. The joy of steroids! I am very grateful for the internet and my lovely bedroom. I am warm and content aware of your prayers for me. I am grateful that I haven't been sick so far. I am putting into practice the things that I learnt so far with so many helpful tips from lots of you. Thank you. I will go back to praying at night for those of you with difficulties in your lives. What a privilege to carry everything to God in prayer.

On a lighter note we had a lovely evening yesterday for Chloe's birthday. Takeaway and cake (made by Chloe) Joy and Matt popped in (thank you) and we laughed - always a good medicine.

Ok we are done first chemo over. 7 to go. We have pictures of the very attractive hat which we will try and upload later. All went well. They aren't sure about why I am anaemic but happy to give chemo any way. Had first dose of steroids - hoping they don't cause me the side effects I had last time. Only have to take them for 4 days in every 3 weeks.

Chloe is making her own birthday cake luckily she enjoys cooking!

Ben is off out with friends and Paul is shopping for essentials. All is as normal as it can be.

Thank you for all your messages, cards texts etc.. I felt surrounded today.

Well glad that's over. Having been told it didn't need contrast it did! However they managed to get in first time. Hurrah!

It certainly was an interesting experience. You lay on the table and place your front in the holes. arms by your side and your head buried in a pillow. You are then given headphones with music as the machine is very noisy. My nose was trapped so I couldn't breathe very well and I am not very good at lying still. I used the time to pray for church and friends but I was very relieved when it was finished. I promptly then threw up - lovely.

I was aware of the room being full of all of your prayers - thank you

Sick again this morning and last night yuck - not sure what is going on. Feeling quite wobbly.

Had great fun having a bath this morning with my PICC line arm encased in a blue plastic 'thing'. Quite tricky! Decided to give up on washing my hair and going to wait for Chloe. Hoping it gets easier with practice - maybe my left hand will get better at doing things!

This is the second picture of this afternoons activity think I will be doing it without clothes on but it gives you an idea.

Chloe coming back this afternoon so we are really looking forward to seeing her.

This was written yesterday but we had no internet!

OK the deed is done! Slightly complicated by my useless veins. They found 2 possible veins and you get one shot at each. First go the vein didn't cooperate and decided it didn't want a tube in it. So we were down to last vein and discussing having to come back. But hurrah it worked! I had a lovely radiographer from Australia telling me all about her travel plans which made the whole thing so much easier.

Unfortunately my blood count has already dropped quite low before I start the chemo. This is probably due to the methotrexate and explains why I have been feeling rather yuck the last week. This means we will already be having a conversation about what we do before I even start the chemo. Please pray that they are able to do chemo on Thursday as I would like to get started.

Had internet all morning - maybe its mended - or is that wishful thinking!

I have just had coffee at work which was just what I needed. They are all so wonderful and I feel so cared for. Thank you girlies I love you.

I started the day badly by being sick - not sure what that was about - maybe more preparing!

Feeling better now. I will be glad to have this afternoon out of the way.

This is a taster of tomorrows adventure - guess what the holes are for!!

Okay so fun morning this morning. They started trying to find a vein at 9.35 this morning and gave up at 12.30! 9 goes - 2 nurses, 2 clinical specialists and an ultrasound machine and they couldn’t find a vein to put in the isotope for the bone scan. I am now full of holes – maybe I will leak when I have a bath! The new plan is to go back and have a bed on a ward with the specialists - having had a warm bath, wearing gloves and a thick coat (me not the specialists!). Ho hum!

On the plus side I spent the morning with lovely people all trying their best to make my life easier. I had an offer of a proposal, told I was lovely and described as a very patient lady. Not sure how else you could be when it is nobodies fault!

Glad to have my lovely husband holding my hand and discussing the weather while I sang as they poked me. I think I may have used up all their tiny needles!

On a lighter note I am glad to have tennis to watch on TV and an engineer coming on Wednesday hopefully to mend internet.

Ho hum! We still have no internet so my lovely boy is lending me his phone to connect with. We are frustrated now as they seem unable to decide whether it is a local fault or a problem at our end. We now have to wait until Wednesday for an engineer to come ( they cancelled the one that was coming on Tuesday)

On a happier note I have spent the morning in the company of some delightful children. They decided to come and sit with me in church and then came and sat with us at the church lunch. They were such lovely company full of conversation about their lives – just what I needed. We have covered such subjects as which is the best ride at Disney, what is the best meal at school and the newest design in shoes. All done with such beautiful manners and lovely turn taking. Each child listening to the others and asking questions of each other. What a joy!

It has been wonderful having Chloe home over the last few days. We have been singing together with Ben on the piano;

You are the everlasting God, the everlasting God

You do not faint you won’t grow weary

You’re the defender of the weak

You comfort those in need

You lift us up on wings like eagles

Our God you reign for ever.

Our strong deliverer You are the everlasting God.

She will be back again on Wednesday afternoon and staying until the weekend. Not quite what she had planned for her 21st birthday which is on Thursday (chemo day).

I continue to hold on to these words. He will not grow tried or weary over the next year. He will be holding my hand and comforting me when I need comfort. I need that picture of his hand in mine.

Hurrah we have internet!

I am feeling much better this morning - glad for new days.

I am beginning to get my head around the week ahead.

Monday - bone scan 9.30 - 12.30

Tuesday - PICC line fitted ( into my arm for drugs) 2.00
Wednesday - MRI scan 2.00
Thursday - Chemo starts 12.30

I would appreciate your prayers that the bone scan is clear and that all goes well fitting the line on Tuesday. Also that I tolerate the chemo well and cope with the side effects.

Look out for funny stories about Wednesday that will involve a hole and a 'feeder'. Also a cold hat on Thursday which I will try out while I have my chemo to help conserve my hair. I am not yet convinced that I will do this as it seems a lot of hassle to sit with a very heavy, very cold hat on your head which may or may not work. We shall see. Thinking that pretty scarves and bandannas are the way to go.

Hope you all have good weekends full of sunshine and laughter.

I have had a rather yucky night with my first migraine in 5 years. Ho hum! Suggestions have been made that it is preparing me for the chemo! At least I was able to practise using my bucket!

So today has been a slow day. Coffee with a friend and an afternoon snooze. We are having lots of problems with our Internet so texting is probably the best way of getting hold of me at the moment or of leaving a message. A man is coming to fix it on Tuesday.

I feel a bit like this is all a dream and maybe soon I will wake up and it will be over. However when I feel like that I remember that the creator of the universe is holding my hand and we are in this together.

Ben is sitting beside me making a foot - as you do! Or maybe as he does. Chloe is avoiding revision and chatting with us. What a joy my children are. Paul has gone in search of the internet!

I had a very good appointment with the consultant today. He spent 50 minutes explaining everything that will be happening. I will have a bone scan on Monday, a PICC line fitted on Tuesday afternoon(this is a tube fitted into my vein to put the drugs in and to take blood from), MRI scan Wednesday and then start chemo on Thursday. So a packed week. Following the consultant appointment we went to see the oncology department and to have blood taken. We met a lovely nurse who was very helpful.

We went back to Joy and Matts for lunch and enjoyed the sunshine in their lovely garden.

I spent the afternoon with a lovely friend who is travelling a similar journey. What a joy it is to have her as my travelling companion.

I am now exhausted but glad the chemo is to start soon.

Thank you for all your thoughts and prayers.

I see the consultant today. I am grateful for the sunny morning and that Jesus comes with me holding my hand. He promises to never leave me and he doesn't. Hopefully I will post later and let you know how I get on.

I am getting ready for chemo - I have books, knitting, sewing, and a sick bucket and bags coming in the post. I have a lovely pair of sun loungers for the garden so do come and join me when you can. I love company.

Sorry the date on the blog is confusing people I will try and sort it out. I wrote the last post this morning 2nd June. I see the consultant tomorrow 3rd June at 9.10. Appointment will take about an hour. We are having trouble with our internet at the moment so don't panic if you hear nothing from me. Technology is wonderful when it works but very frustrating when it doesn't!

I have had a lovely day today with a friend in Reading. We sat in her beautiful garden enjoying the sunshine and chatting. I couldn't quite believe that we were in the middle of Reading yet it seemed so peaceful. This afternoon another friend came and we put the world to rights!

Chloe has had her scan today and all fine. We are very grateful for that and hoping that all her symptoms continue to stay away.

Good shopping yesterday we managed to get most things we needed. Lovely time with Ben. I bought some sewing and knitting things ready for the yuckier days to come.

I will be glad when I have seen the consultant tomorrow and I know the plan and we can get on with it. Not very good at waiting!

Looking forward to seeing friends today and my girlie coming home - yippee.

Wow just realised it is June already where did May go?

I had a quiet day yesterday - just right.

I emailed friends and had lots of replies. I am so grateful for everyone's support.

It is lovely to hear peoples news and to know that life goes on all around me while I feel a bit like I am in a bubble. So if you have a moment do email and let me know about your days.

I feel a bit like I am in limbo at the moment - just waiting. I will be glad to be getting on with the treatment although it is good to have some time to get your head around it all.

Today is school trousers day. Poor Ben has been wearing trousers which are too small for him so we are off to buy more. I am looking forward to spending time with him on our own.

Josh went back yesterday after a lovely weekend with us. Chloe comes tomorrow. How wonderful to have such supportive children. They are a joy to us.