Where did that week go?

The count down begins - 4 weeks 1 day! 

This week has passed so quickly and here we are at Friday again. And it's raining - again! We are hoping that it is doing all its raining now so that June will be glorious. However, we are buying umbrellas, which will hopefully mean we won't have any rain. 

This weeks physio went well and was encouraging. He felt that my back problems are probably connected to the mixed connective disease as most things are connected. But that my muscles in my back are very tight and it looks like I did do something to my right side of my back as it is much worse than my left. So with manipulation and exercise it should improve.
My blood tests remain stable which is good and show no sign of secondary bone cancer. All is well. 

So this weekend - Chloe and Ed home for more wedding sorting - first reading of the Banns at church and Ed's Mum coming too, visit to the Hogroast farm, going to flower shop, planning flowers, meeting the vicar- J  to discuss service, a little sleeping and eating. All lovely!

4 years and counting!

Yesterday it was 4 years since Paul and I sat in a room and my world changed for ever. It feels like those 4 years have vanished in a flash but also that it happened to someone else. By the time I reached the room I was quite peaceful - ready for what they were going to tell me. But I had no idea what was to follow - the year of treatment, my kidneys failing and the 16 months of dialysis, laving me with a chronic collection of diseases which shape my life now. Many times recently I have been taken back to the following year when Josh and Debs got married. I was still having dialysis and had just finished my second lot of chemo. I was a tiny person with no hair! But the joy of being part of the wedding day and watching my son make forever promises will never leave me. And now I am preparing to do it again - watch one of my children make forever promises. There are many similarities - I still struggle to do lots of things, I am still often sick but the joy of being here and being able to be part of Chloe and Ed's wonderful day is so precious. We have spent a weekend wedding planning and sorting. Wedding dress fitting, my dress fitting and hat chosen, hair practice, make up lesson, car practice ( thank you J), clothes buying for honeymoon, bunting nearly finished, list making, emails sent, glass bowls bought, so many questions discussed, more lists made!!!!! I managed a morning shopping yesterday with stops for coffee and to sit down but it is the most I have managed for 6 months, which is encouraging. I am SO thankful. 
So this week - physio appointment, blood tests, more dress fitting, flower watering, book lists sorting for holiday club, cooking for weekend and today a bed day! 
I hope all those of you on half-term have lovely plans despite the dreary weather. 

Sorry....

So sorry for my lack of blogging this week - I have been quite busy and quite exhausted! All is fine - thank you for those of you who have asked. As soon as I have a few minutes I will write about Chelsea - which was wonderful. Chloe is home for the weekend and we are wedding planning, dress fitting, hair sorting, hat trying, car practicing, veil trying, list making!
I hope you all have exciting plans which avoid the bank holiday rain!

End of an era.

Last full day at school for my boy. I am no longer going to be the mum of a school child. We have made our last packed lunch!  I enter a new phase of life. It feels quite strange to be saying that. 22 years ago Josh started school and we began the journey with education. We have seen many, many changes over that time. Thankfully our children have all gone to great schools, where they have been encouraged to strive for the best that they can be. They have been given many opportunities to try new things and to experience travel, the arts, music, sports, etc.... alongside  their academic pursuits. I am very thankful for all the teachers who have encouraged and stretched them. We are particularly thankful to Reading School who kept Ben in school at a time when he was very sad. They put his needs above the needs for results and for that we are grateful. It is wonderful to be in this place now. 

I am so enjoying the sunshine. Hopefully it is getting ready for next Wednesday when we go to Chelsea. The tickets are booked, as is the wheelchair. We decided that without it we wouldn't be able to see very much as my back would seriously limit what we could do. I am particularly looking forward to seeing Alan Titmarsh's garden. 

This weekend we have a gardening theme. We are going to a garden centre and then coming back to plant. Our garden is looking very lovely - clothed in spring colours., it just needs it's summer clothing. 

Sunshine and exams .

Sunshine and a new week - lovely. This weekend I have struggled with the side effects of the increase in the dose of azathioprine. I have almost completely lost my appetite and have this background sickness all the time. I have also been exhausted - as if my bones are too tired to function! So yesterday I had a bed day with very little eating. Today I am feeling a little better, hopefully the worst is over and I will adjust to the new dosage. It is hard to keep taking the tablets when you know that they are making you feel so unwell. But as Paul reminded me - it is for the long term good of my hands and feet. Also once I have adjusted to this - I should have a period of stability ( well I can only hope). My back remains a constant hum of pain but thankfully is helped by the painkillers. 

For many this week is the start of exams - SATS, GCSEs, and A levels begin. For us this is our last lot of school exams. It has been a long time in coming and I can't wait for 18th June when Ben finishes. At times I wondered if we would ever get here! This week is his last official week at school. I am so thankful for the support the school have provided for Ben through thick and thin. 

We are on a countdown to the wedding now - just under 7 weeks and we are having daily conversations of the the things which are on our minds. So many little bits and pieces to think about. It is lovely to see Chloe so excited. 

This week - blood tests( last weeks one was stable), flower watering at church ( we did our second pedestal for T's mums memorial service last week), gardening, bible study, GP appointment, coffee with friends, lunch with another friend and some tidying of shelves as I sort out my bits and pieces from tutoring. A fairly quiet week with nice things doted around. I hope you all have some nice things planned - hoping for a little sunshine along the way. 

Photos from Hen Party

All ready to begin

Heads down - concentrating

glasses painted

Afternoon tea

knickers!

Ready for a night out

A foretaste of a wedding.......

I had planned to show you photos but still haven't worked out how to get them onto here from my phone so that they fit and aren't too big. I need a child to show me!!!! 

We had a wonderful day on Saturday - totally exhausting but so, so lovely. It was like a little taster of the wedding. The girls ( and ladies) arrived at 2pm all full of chatter and laughter. Our crafts all went very well and everyone joined in. We decorated knickers, painted a glass and drew on stones. Chloe has gone home with a set of stones with words on to use in her garden in the future. We had a scrummy afternoon tea courtesy of M&S, which we ate in the afternoon sunshine. It was lovely to see Chloe's friends getting to know each other and will help at the wedding to gel people together a little bit. At 7 pm the taxi arrived to take the younger members into Reading for cocktails, a meal and dancing. I think they had a great time - they arrived back all in one piece which was good! Papageno was quite surprised to be joined at 2.30 am by many girls and a lot of treats! 
Ed has also survived the weekend. He had a stag party in Southampton - interesting to see my future son-in-law dressed in a pink tutu, bright pink socks and a pink tanktini playing golf! Thankfully he will be slightly differently dressed for the wedding! 
On Saturday we also got to see the bridesmaids dresses which Ed's mum is making. They look so,so beautiful and seeing them made the wedding day seem very real. Over the weekend there has been a lot of wedding chat which is lovely. Chloe sent me a text last night saying - I am  so excited. With less than 2 months to go it feels quite soon! 
My back coped ok with the business of Saturday ( I did have wonderful help from A who came to be an extra pair of hands and Joy who helped clear up afterwards ) but I was very tired yesterday. So no big plans for this week. Blood tests today, then flower buying and arranging for a memorial service for T's mum on Saturday, an appointment with the occupational therapist and bible study with my ladies. I am sure there will be more list making from our discussions over the weekend! 
Hopefully I will post photos later! 

In the midst of the storm......... and a hen!

My reading today in Matthew is timly - fitting with yesterday's theme of change. It covers the story of Jesus and the storm when he walked on water with Peter. It reminds me that when the storm comes - and there will be storms for all of us - we must keep our eyes fixed on Jesus. It was only when Peter took his eyes off Jesus that he doubted and began to sink. How often in the storms do we take our eyes off Jesus and concentrate on the waves!

We used to sing this song in church 

Turn, turn your eyes upon Jesus
Look full in his wonderful face
And the things of earth will grow strangely dim
In the light of his glory and grace
Read more at http://www.songlyrics.com/hillsong/turn-your-eyes-upon-jesus-lyrics/#b7ul2rxhS84BU0jd.99

This weekend is the Hen Party. I am gearing up for a houseful of giggling girlies. The craft stuff is all ready and the afternoon tea is ordered. Today I am hoping to do a bit of cleaning and get the tables ready for the craft day - back allowing.  What fun! if I remember to take any - photos after the weekend! 

Change who needs it.........

Recently I have been thinking about change - and how much I don't like it! I like stable and same! But as Christians we are called to change - daily - to become more like Jesus. That is costly and painful. It is also very slow ( certainly in my case). I am so drawn by a comfortable, easy life and I don't like the discomfort of change. I am also stubborn and like my own way and my own plans! The last 5 years have been very far from my own plans and my comfortable, easy life. But oh how I have changed. The day in the hospital when I chose to put my life into God's hands was pivotal and I trust his plans ( with the occasional wobble). I may not always like the way his plans have unfolded and the journey it has taken me on but I know that I am changed because of  it. My priorities have changed considerably and have had to.  It is so easy to be led by what the world says is important, to look beautiful, to have a beautiful, perfect home, to have a fast car, to own many possessions, to go on exotic holidays, to have a well payed job......  but all of those things dim into insignificance in the face of severe illness and even death. What counts then is - how did you live your life, what did you do with this one precious life, what are your relationships like, do you love  Jesus?  So change may be hard and I may fight it but I want to be more like Jesus day-by-day. And if this journey is what it takes - then bring it on!