A surprising day.....

Today has been a really happy day. My boy has got into Birmingham University to study Political Economy. We are all delighted and there have been plenty of tears. He had a couple of exams that hadn't quite gone as he would have liked and so he had persuaded himself, and us, that he hadn't got in. So we were planning for a day of finding out how to get into uni through clearing. So it was a great surprise that Ben arrived in the bedroom first thing this morning holding out his phone to show the message from UCAS welcoming him to Birmingham Uni. We are so thankful that after some very tricky years he is now moving onto the next part of his life and we are so very proud of him.I will miss his constant presence in my life and of course his singing every day brightening my life. But I am so excited for this new adventure. His lovely girlfriend Anna is at Birmingham studying medicine and so she is so delighted to have him near her. This day has been a long time in coming but we are so pleased it is here. Results days for us ( as I am sure for many families) has been a real mixture of sunshine and showers. It is lovely to finish on a high note. My best wishes for all of you who have also had results today. The waiting is so hard. 

Weekend and hospitals!

Thank you so so much for all the emails and messages that you have sent since my last post. I have felt really blessed. It was a very hard post to write as I want to write that I am getting better and that every day is a joy but I don't want to mislead you. Chronic illness is rubbish and for those of you who suffer or care for someone who does you will know the ups and downs that come with the diagnosis. However I don't want you to think that I am sitting at home sad all the time - that is not the case either. I just have good days and bad days and sometimes good mornings and bad afternoons! There is very little pattern although I can predict that after a busyish day I will have a bad day. I am thankful for sleep ( even if it is broken sleep ) which restores me eventually! 
My weekend was lovely. It was great to see Chloe and Ed's new flat in a lovely part of Kingston. Chloe is 7 minutes walk from the hospital which is perfect after late nights. They have a little garden which they are already enjoying using. It is smaller than their last flat ( the joy of London prices) but is light and airy and only has 1 bathroom to clean instead of the 3 in the last flat! Their wedding presents arrived yesterday so I think they will be needing more storage as they have filled their existing storage. 
The cycling was wonderful. We managed to miss the pouring rain, thunder and lightning unlike the poor people cycling. We saw some of the 30,000 amateur on thier way back into London and then the pro cyclists just leaving London. We were so lucky that there was a cross over at the end of Chloe and Ed's road so that we could see both. I have a few photos which I will post later of cyclists whizzing past. I love all the pagentry of the cycling - the motorbike outriders, the sponsors cars and then the head of the race car and then the cyclists passing so fast that you almost miss them followed by the streams of  team cars in bright colours with the ambulance and police cars at the back. Often there will be a lone rider mixed in with the cars seeking support of some kind. Knowing some of the cyclists and their teams really helps and I can now pick out cyclists from the peloton (sometimes) as they whizz past. On Sunday we saw Bradley Wiggins with the team sky boys. We returned to see the return of the pro riders later in the day having followed the race on television through the afternoon and were delighted to see 2 British boys in the breakaway who eventally came first and second. It was so wonderful to be able to do that on Sunday without very much walking at all and a nice little wall to sit on while we waited. It was the first time Paul had seen a cycling race live and I think he glimpsed a little of why I like it so much - although I don't think he will take up following cycling! The journey home was quite exhausting and I was very, very glad to be back in my bed by the evening. 
Yesterday I had my annual visit to the oncologist. Sadly my consultant has retired and I was unsure who I would see. After some confusing phone calls the previous day where they tried to cancel my appointment as I have a mammogram next week and they wanted me to wait until October for the results, I managed to persuade the nurse that I needed to be seen now. I had a good chat with Dr A and he decided that we did need to exclude the possibility that my back pain could be caused by bone secondaries so I am having a bone scan next Monday. I am sure this is a precaution but I don't want anything to be missed because we assumed it was part of the autoimmune disease. He took that very seriously and agreed. So next week is going to be a week of hospitals - I have a bone scan on Monday. ( injection at 9.45 and then the scan at 1 pm), Wednesday a mammogram and Friday a rheumatology appointment where hopefully we sort out my drugs. I will then have an oncology appointment when my bone scan results are back - in about 2 weeks time. Hopefully after all that we will have a better idea of the plan - and we all know how much I love a plan! 
Tomorrow is results day and hopefully after that Ben will have a plan too. I can't quite believe that after 27 years of having children at home it will just be Paul and I. Life is ever changing. 

Absence....

Thank you for all those who have contacted me wondering if Paul and I are ok. I am sorry for my absence. I have always wanted this to be a place where I honestly say what is happening and how I am feeling. Recently I have been really struggling. Paul has recovered from his operation very well. Today he returns to work. For me this has just highlighted the fact that I am not getting better. That may seem a rather strange comparison, as of course he was going to get better and I am delighted  that he has. People have been kindly asking how he is and we have been able to say that he is improving every day. Then people turn to asking me,as they have over the last 5 years and mostly in the past I have been able to say - I am improving, except for the last 9 months since I started the methotrexate and ended up in hospital. These 9 months have been so hard. It has been one thing after the other - mostly drug related with pain thrown in. Obviously there have been wonderful times - Chloe and Ed's' wedding being the highlight. But I can no longer say I am improving. I have reached the new, new normal and that includes slow decline. I have had to accept recently that there are many, many things that I can no longer do and that I may never be able to do again. I have always felt that being reliable was very important and I am not reliable. I have good and bad days and unfortunately I can't tell when they will be. This means that I can't take on any role where I need to be depended on to carry out that role. This is hard to accept. I have to rest daily and I can no longer do evenings. I have to take a cushion to places to support my back and carry a sick bag just in case! I cannot walk very far without pain and that restricts what we can do. This is hard to write as I feel like I am moaning and groaning. But I think this is the truth about chronic diseases and the life that people lead who have them. It is hard to watch other people getting on with their lives and not to feel sad. The main reason for all of this is the return of the autoimmune diseases and the side effects of the drugs I have taken to try and control them. Having come off one of the drugs the  pain is creeping back into my joints.
All of this said - I am sad but not despairing. I am aware that this sounds like I am looking for sympathy but that is not the case. I just want to be honest about this journey. As I have said often before it is so, so easy to feel poor me! As if there is some unfairness at work but that is not the case. This is my journey - this is the plan and my part is to trust that the creator of the world is here with me. Sometimes I am clinging on by my finger nails but he is still there holding my hand. There is still joy every day to be found all around me. That means taking my eyes off my own situation and looking for it. It is my choice!
So that is where I am - I am sorry that I can't say I am improving every day. I know that is what people want to hear.  They don't want to hear yet again about what is hurting today! I am learning - very slowly - to take each day as it comes. For a planner that is very hard! Maybe that is my new lesson.
This weekend - all being well we are going to see Chloe and Ed's new flat in Kingston. Chloe and Ed are coming to pick up some more of their things which are here and then will take me back to Kingston with them. The prudential Ride London is passing by the end of their road so we are hoping to wave at the cyclists on Sunday.
This week I have my annual checkup with oncology, it doesn't seem a year since I last had an appointment. My blood tests yesterday were all stable which is good. Despite all that this year has thrown at me my kidneys have toddled along very nicely.
Thank you for your continued support - even in this struggle.

Surgery - no problem

So here we are Monday again! Paul is doing so, so well. He was first on the list for surgery on Friday which was nice. He had taken the bus and train to get to the hospital at 6.30 in the morning. Ever independent! It was a long wait until I heard from him at 1 o'clock after he had woken up. Even though I was sure all would go well there is still that little niggle ( not helped when Paul started looking for our will a few days before the op!) He wasn't worried but just wanted me to know where it was. We were hoping he would be able to come home in the afternoon but unfortunately he was sick and so it was evening before Matt could pick him up. Paul was relieved to be home - not wanting to have to stay in. The first night was a bit tricky as he had to sleep sitting up due to the pain in his shoulders from the gas. But since then he has been getting on really well. He even walked to Waitrose on Sunday afternoon - he decided that was a bit far - after the event! I am so proud of him. This week he has a few little projects to get on with. We have coped quite well although I have been aware of all the little things that Paul does every day which I struggle to do. On Saturday night I was asleep really early - exhausted from just the extra little things I had done and frustrated by all that I can't do. 
This week is about recovery - we haven't planned too  much and will just see how Paul gets on. I will be found near a TV or radio following the Commonwealth games which have been wonderful 
My thoughts and prayers are with all my church friends who are holding a holiday club for about 350 children. What an amazing opportunity to tell so many children about Jesus. 
I hope you all have wonderful summer plans. 

Weekend photos

Canterbury Cathedral

 These are photos from the weekend - see post below for words!

A light kept burning to remember Thomas Becket

Beautiful view

A body of nails

Chloe and a lizard

Lunch at the marina

Boats!

Lovely weekend

We have had a lovely weekend with Chloe and Ed. We managed Canterbury Cathedral - I can now tick that off my list! It is huge and has so many little chapels and a very large crypt. The spot where Thomas Becket was killed is very poignant. It was very busy. We had lunch in a lovely cafe with delicious food - my favourite pate. I now have starters as my main course when we go out for meals and this seems to work well. I am a cheap date! Then a little shopping while Paul 'did' the cloisters. We visited a pottery with such lovely, lovely things - I could have bought the whole shop! On Sunday - after much discussion - we visited Shorne Country park - perfect for a short walk and coffee and cake. Then lunch at the marina - watching boats. Ed's perfect spot! It is amazing to think that their year in Kent will soon be over. It has been interesting to explore more of a county that we didn't know but we are looking forward to having Chloe and Ed nearer. They move in 2 weeks and Chloe begins in Kingston a few days later. 
So this week - it is strange not to have the routines of the school day any more both for me and for Ben. I need to find new routines to define my week. I have a mountain of washing to do - still working through bedding from wedding week and holiday washing. I think we must have another families washing as well - it feels never ending! Recovering from weekend, blood test, flowers and I am hoping to do a little cooking now the sickness is lessening, the Proms have started so Paul will be off there a couple of evenings this week before his op on Friday puts paid to any more for a bit. He is anticipating a 2 week recovery period - so our 'nurse' will be busy! I hope all my 'school' friends have wonderful summer holiday plans. I am sorry I haven't got to visit this term. Hopefully next term I will be feeling much better. 

Eyes off the plan.......

This has been a tough week. I am still struggling with some background nausea and knew that I had to speak to the hospital to tell them I had stopped taking one of my drugs. For me it is always a balancing act between the need for drugs and the difficulties of the side effects. My kidneys hold onto the drugs much longer meaning that I have more side effects or that they last longer at lower doses. The azathioprine had been making me very sick and eventually I couldn't cope with the sickness any more. Some level of nausea and sickness is ok but I was being sick 2,3 and sometimes 4 times a day. It is very hard to manage life when you are that sick and even harder to cook. After a discussion with the GP, who told me that I was looking more poorly than she had seen me we decided that I shouldn't restart the drug but phone the hospital. They were very helpful and I have a few options to try before I go back for my appointment at the end of August. It looks like it is a bit of trial and error ! Unfortunately these drugs take ages to work and ages to leave your system so it takes a long time to work out whether I can manage without them or what dose I can tolerate. Basically I am turning my immune system down so that it doesn't fight my body but not so much that I can't tolerate the side effects. 
This has all been very hard and has left me struggling to cope. I love being busy and nausea and sickness make this very difficult. I have lost sight of the plan and I am never happy without a plan! Thankfully my ladies have reminded me that God is in control and has a plan even if I have taken my eyes off it. How easy it is to sink into the poor me place and wallow! Never a good thing to do! So today I am going to ' fix my eyes upon Jesus' .....' and the things of earth will grow strangely dim, in the light of his wonder and grace' 
This weekend we are going to Chatham to stay with Chloe and Ed before they move to Kingston. We are hoping to visit Canterbury Cathedral. I hope you all have lovely weekend plans in the sunshine.