So here we all are again - its Friday. Again a fast and wet week! I can't believe the school holidays are nearly over. Life seems to be whizzing by! I continue to treasure each day - so grateful to be getting better all the time. Even if it is slower than I would like.

My boys results were OK yesterday not as we would have wished but fine and enable him to go on to do A levels. He seems to have coped with results day and we move on. He is at Reading Festival - probably a drowned little rat!!!

Chloe is having a wonderful time - although interspersed with very sad situations. I am SO grateful for the NHS and for wonderful nurses and Drs who care for me. She was looking after a man yesterday with kidney failure who will die because there is only 1 hospital in Uganda where you can have dialysis and he wouldn't be able to afford to get there or to pay for the treatment. We take so much forgranted don't we.

So the week ahead hopefully involves, picnic and walk at Henley, coffee with friends, early morning dialysis, shopping with Ben for school, crafting, and next weekend in Bath for our 30th wedding anniversary. We are staying in a beautiful hotel for 2 nights. I am SO looking forward to it.

School will return next week and it will feel very strange. This will be the first time they have gone back and I will know I am not returning. I can't quite get my head around the change that will bring knowing I will no longer work. I am sure there will be new things to fill my life and give it purpose I just need to find them. At the moment I am just glad I can be a mummy again!

So last week. It was fine went past quite quickly (must be my age!) I had coffee and a walk at Dinton pastures, shopping and coffee in M&S followed by a picnic lunch in a park. My boy returned home and El came to stay. Plus the usual dialysis. Then my wonderful weekend away.

This week includes lots of sleeping to recover, shopping with Ben for last minute bits and pieces for Reading Festival, a patchwork evening with friends, some tidying and ironing, a mammogram on Thursday morning followed by dialysis, and a quiet weekend.

I have been asked again to change my time at dialysis and this time I have decided that I will do it. This will mean getting to the hospital for 8am. It will be another change for us but maybe for the better. I have less people with me now for dialysis so it won't be a problem. The plan will be to leave straight away when we are up, have dialysis and then come home and have a sleep. This will then mean I may have some of the afternoon left and the evening - hopefully. It may mean I just feel yuck for more time we shall see.

I had a lovely chat with Chloe this morning. She is having an amazing time - although seeing such sad things. So many babies I would like her to bring back for us to look after. She had a wonderful visit to an Island at the weekend and camped in a tent overlooking a lake under thousands of stars. I am SO looking forward to seeing her photos. It has been a visit of a lifetime.

Well thats me for now. Hope you have all had wonderful holidays.

Please keep evening of 8th October free for my end of treatment party. Just beginning to get organised.

My weekend away

We had a wonderful 2 days. The weather was great - no rain just slightly cloudy and sunny. We did so much.

• visited a sailing club
• had lunch over looking the harbour
• visited a pond and saw little egrets - huge white birds, herons, gulls of all sorts
• sat on the beach for 2 hours with the sea lapping our feet - quite warm (if I had taken my costume I would have been very tempted to swim)
• had ice cream on beach
• walked around harbour at dusk - very beautiful with the tide in
• went to mill pond with fantastic views out to sea - saw lots of birds, oyster catchers, godwits, greebs, swans, ducks etc....
• lunch on a hill overlooking Portsmouth
• went to hobbycraft and bought bits and pieces
• ate lots
• enjoyed one anothers company(great to meet Claires parents)
• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • Allin All in all a wonderful 2 days. I love water I have decided and need it to be part of my life more often! It was so peaceful and yet there was plenty going on. It also felt a lot longer than 2 days just getting away from everything.
                                • • • • • • • • • • • • • • • • • • I will write about last week later as I have to be off now to dialysis. If you follow me on facebook there are more photos there. Sorry about this chaotic posting not sure what has happened it now wants me to put everything in bullet points!
                                                                    
                                                                    
                                                                    Thank you Claire for such a lovely time

Thought i had better update on my visit to the consultant on Friday before I forget. It was a good visit. He was pleased with my skin and feels that the scleroderma is dormant at the moment. I will see him every 3 months for a year to make sure that it isn't progressing. It is just a wait and see whether the chemo has knocked it on the head for ever. I hadn't seen him for a year so it was good to hear that I was looking very well. I was in the middle of chemo last time and looking quite poorly. While I was there I had a DXA scan to show bone density. As I am taking Arimadex I am more likely to get osteoporosis so they check what your bones are like as a base assessment. (The dialysis also effects your bones) My hips were fine but my spine already shows slight changes. Hopefully taking calcium and vitamin D will be enough for now. I am not keen to add any more tablets into the mix! It feels a bit like no part of my body has not been affected by all that has happened to me.

We had a lovely time with Josh and Debz. It is great to be able to imagine them in their home now. We had a very yummy lunch and a lovely walk to the rockery gardens near their house. How grown up it all seemed. I still don't feel odd enough to have a married son!

So here we are Friday again and what a busy week. Last Saturday Chloe left for Uganda and by the wonders of Skype we have chatted most days - amazing. I can't quite get my head around that. She is doing well and enjoying her experience although I think she is very tired. Hopefully she will get to rest a bit at the weekend. She has seen her first deaths - the first one on the first morning. And seen how important preventative medicine is in this country. Lots of high blood pressure and heart disease which is only discovered because of other diseases.

Ben left for Turkey on Wednesday and unlike Chloe we have heard nothing - not even the phone call we had asked him to make to let us know he had arrived safely - ho hum!

I had my fistulaplasty on Monday which was quite painful despite sedation. It looks likely though that quite a lot of the sedation ended up in my tissues and not in my vein by the size of my arm and the bruising afterwards. The good thing however is that it has been successful and the pressures are now up to 1,900 from 400 so that is good. The stitches came out yesterday and were quite tricky to remove so I am now steristripped and plastered to reduce the scarring - ho hum!

Dialysis has been ok this week although I continue to be able to only needle the bottom needle. Think I will discuss making a new buttonhole next week.

Today I am seeing the rheumatologist to discuss whether I need to go back on methotrexate. I am hoping that we will be able to hold off for a bit longer as it makes me feel sick. Also think that it might be dialysed out by the machine so may mean I need to have a different drug anyway. I do have some tightening of my skin on my hands but it is not too bad and my joints feel ok.

Still no results from bone scan - I am assuming this is good news as if it was awful I would have heard by now - I hope! If no news by Monday I will ring again.

So the week ahead holds a visit to see Josh and Debz in their new flat, coffee with friends, shopping in m&s and most exciting of all next weekend i am going on an adventure to the seaside for a night away. Hoping for lovely sunshine so that we can have a paddle!

I continue to work through Job in my bible study. I think it is good to realise that however hard we find it there are no clear and cut answers to suffering and why God allows those he loves to go through hard times. The most important thing to grasp is that it is not about knowing why it happens but it is about knowing the God who knows why it happens. He is in charge and he knows and that is enough. It is good to know that God is unchanging - he always loves, always is good, always uses situations for our good, always is in control, always powerful, always trustworthy, knows all things, never leaves me. And that is enough. I hope it is enough for you too.

Writing on Friday evening as tomorrow morning will be busy. Tomorrow my girlie flies to Uganda. I am excited and scared for her all muddled up. It is such an exciting opportunity - to work in a christian hospital in a third world country. Wow! I think life will never be the same again for her. She flies tomorrow evening about 9pm. Ben is spending the weekend at my brothers building a wall. It will be very quiet here. Kit has flown to Greece and Joy and Matt are in France. On Wednesday Ben flies to Turkey - everyone is leaving me!!!!

I have had a good week although quiet, enjoying the sunshine and the warmth. I love the feel of the sun on my skin. I haven't had raynaudy fingers or toes all week - that is very rare.

This week is full of hospitals.

Monday - fistulagram (scan of fistula) probably followed by fistulaplasty if there is a narrowing. This involves being sedated while they put a balloon into my fistula and blow it up!

Tuesday - dialysis

Wednesday - no hospital

Thursday - dialysis

Friday - rheumatology appointment with consultant to review the mixed connective tissue disease and discuss whether I need to go back on methotrexate again

And hopefully at some point the results of my bone scan. Ho hum!

I am missing writing the blog and sharing my life with you. I often think ... has happened I must write about that.

Please pray for my uncle this week as he has an operation on a lymph node in his neck and waits to hear if he will have radiotherapy or chemo.

Hope you all have exciting weekend plans with family whenever possible. Treasure your days.

I thought I should update you on the bone scan and thank you for your thoughts and prayers. It went well. I turned up at the physics department in my jumper and gloves despite the 27 degrees outside. I kept my glove on until the very last minute and the physics girlie got a butterfly needle in first go - yippee! It was wonderful - no clinical skills - no 9 attempts and no bruises. CA and I then went into Reading and had a lovely lunch at Jamie's outside watching the world go by - a real treat. We also shopped - me for Chloe's list of things for Uganda and CA for bits. We returned for the scan 3 hours later. I kept my eyes closed as the scanner came VERY close to my face and it was over in half an hour. It will be reported on in a few days and then I will hear the results. I am SO praying for it to be clear.

For your prayers also - I am having my fistula scanned next Monday with the probability that I will need it ballooned again. I have a bed booked straight after the scan to have fistulaplasty. This involves putting a tiny balloon into my vein and pumping it up to enlarge the narrowing in the fistula. It can be very painful so they sedate you. Last time i had it done it was fine - I have very little memory of it. Just that I bled for a couple of hours so we had to wait for ages. So thats next Monday taken care of!

Also please be praying for Chloe who goes to Uganda on Saturday. She flies on Saturday evening. I am trying not to worry but to be excited for her. What an opportunity to see medicine so different from ours.

Also Ben flies to Turkey with friends for 8 days next Wednesday - it is all go here! His first holiday abroad with out us.