This is a photo from our evening with Blake - the singing group. This is one of the members of the group signing Claire's wheelchair. We had a lovely evening. More forever memories to be stored up for a rainy day! Thank you ladies.

Yesterdays physio appointment went well. She was amazed that my arm had gone down so well - it is now called my skinny arm. In places it had shrunk more than 4 cms. We have agreed that I will wear my sleeve just when I am out and about with my arm down most of the day. When I am able to rest it I will try and keep it up - mmmm easier said than done! I only have to go back to her if it starts to swell significantly again. In the mean time I have to watch it carefully for signs of cellulitis and go straight to a Dr if that happens. My blood test was speedy and successful. I had the same lovely phlebotimist as last time. She is very gentle and uses the tiniest of needles and slowly withdraws the blood. It takes a while but it is so much less painful. The surgeon was very happy with my arm and hopes not to see me again! If he does it will be to make another fistula as my kidneys would be failing or to have a transplant - neither do I want to happen! I will need to have a scan of my other arm to make sure that we have a plan for another fistula if ever I need one. So that will involve another hospital visit. I have had so many visits in the last 2 months which I had expected to be free of hospitals - oh well never mind. I had to park up near the uni yesterday and walk down to the hospital and then the whole length of the hospital for my appointment and then back again. It is the furthest I have walked for a very long time. It was good to remind myself that at one time I couldn't even walk half the length of the hospital and had to have a wheelchair. How times have changed. I am so grateful for my new energy levels.

Today is a quiet day. I am sitting in my bed and typing and there is no one else around. Paul has gone to London with work and Debz and Ben are at school. It is very quiet and peaceful. Again I am remembering those days when I couldn't cope with being n my own and the silence was deafening. I am so thankful for so much recovery. Yesterday I was listening to the debate about sleeping tablets and addiction on the radio. It made me so grateful that I had been able to give up my sleeping tablets so easily 2 years ago. I remember how anxious I was to give them up and I would never take them again. Thankfully I sleep quite well now but I am only too aware of how awful it is not to be able to sleep but also how horrible it is to be dependent on anything.

Goodness - a lot of waffle today. You can tell i am on my own!! I will be off now to start my day. Some planning for tomorrow - Ben's birthday. He will be 17 - I can't believe that he is so grown up. His performance part of his AS music exam was yesterday and he feels it went well. It has been a joy to hear him singing the songs. He has been asked to sing a solo in his schools combined concert with Abbey School. I will really look forward to that. More forever memories - hurrah! Life is so full of joy.

Good day yesterday - lots done and energy to do it - hurrah! I am on the mend again. Coffee with a friend yesterday left me feeling inspired to get on with my projects.

Today - lymphodema physio, blood test and review with surgeon for my arm.

Yesterday was a really lovely day. I hope you were able to enjoy the beautiful sunshine. How wonderful to feel the sun on your skin. The colours at Savill Gardens were wonderful. Despite still being winter they manage to get so much colour into the gardens from stems, trees, and bulbs. The light was perfect for photos too - casting everything in dappled sunshine bringing it to life.

We also had the joy of listening to Ben sing. He was practising his pieces for his music exam on Tuesday with his teacher, as Ben had been ill all last week. It was so lovely to hear him sing.

I am looking forward to a week of feeling better. I have more energy again and hopefully will get lots done despite plenty of hospital/Drs visits.

2 days of sunshine what a difference that makes. I can hear the birds welcoming the new day and I'm thankful. The last 2 months feel like they have been hard work. The surgery on my arm and following pain threw me and has made life quite a struggle. But I am getting to the other side at last. My arm is feeling much better and I can now do most things with it again. The swelling has almost gone which is fantastic and it looks like my arm again not an elephant arm. Yesterday I managed without my constriction bandage and it seemed to be ok.

Paul and I had a lovely time at the garden centre yesterday planning this years gardening. We even bought a new propagator for seeds. I am looking forward to filling it with seeds. There is such joy in growing things. The garden is still looking good despite the frosts etc that we have had. Paul's alpine bed is looking great with little crocuses poking up their tiny heads and new buds appearing. We are looking forward to the bulbs we planted in the Autumn appearing soon - if Papageno didn't dig them all up! He loves digging in freshly dug soil!

Today we have church and then we are going for our first visit of the year to Savill Gardens. Hopefully it will still be sunny when we get there.

This week I have more hospital visits to see lymphodema physio and surgeon for a review of my arm. Later in the week I will see the GP for a review of my tablets and a blood pressure check. I also have to have a blood test to check on my muscle enzymes to make sure that my muscle pain is not due to autoimmune disease. ho hum! Its a good job I don't work as I wouldn't have time for it!

The photos above are from Tuesday when we went to see Anton and Erin dance at The Hexagon in Reading. What a lovely evening!

Today I have ladies bible study and ladies who lunch. Last night I went to a patchwork meeting with some of the ladies from church. It is really lovely to meet together and sew. Most of the others are doing much trickier projects than me I am still making my cushion! However it is still lovely to be part of it. I am really glad to be able to hold a needle again and sew. I am determined to get on with my cushion now and finish it.

Yesterday was wonderful - I met and had a cuddle with Anton Du Beke and Erin Boag - photos to follow I hope. Their show - 'Let's do it' was wonderful. Great mix of lovely dancing and music. It has gone into my forever memories box to be kept for sad days. They were as lovely close to as they are on the television and they spent a long time chatting and having photos taken after the show.

Today as you can imagine I am exhausted. Thankfully I haven't got much planned just a peaceful day.

I did manage most things on my list yesterday which was great. Maybe things are improving. I am also very grateful that it is not so cold - it makes life much more bearable to be able to go around the house without white frozen fingers. Hopefully we have finished with the very cold days.

I think I need some more sunshine - I have had enough of grey days. Please could we have spring now! I continue to struggle just wanting to be well. I think I need to learn to be content with how I am now. Accepting my limitations and being grateful for all I have and all I am able to do. So often my plans out way my energy levels. This means that I go to bed not having done all that I wanted to do. This is OK I just have to accept that I can't always do all that I want to do.

I have a busy day today, coffee with a friend, visit to the library to return books, finding my floor in my bedroom, some tutoring, some pancake making, and Anton and Erin at the Hexagon tonight. I am hoping to have enough energy for it all - a sleep this afternoon will be necessary I think. See already I am planning more than I will be able to manage! Before I was ill I packed my days with activity - and now I just have to realise that I can't pack them so tight - I need to leave some air in my packing!

My tidying is at last going better. I have managed to sort out all my craft projects and tidy my desk. It looks much better. The rest of the house is a mess but at least one area is tidy!

Yesterday didn't quite go as planned. The rheumatologist was pleased with my joints etc.... but was quite concerned that I had a large clot in my arm just above my fistula which was sore. I said that the surgeon had told me it might clot but he wanted me to go to Royal Berks to see the renal Drs to be checked. Unfortunately this was 3pm on a Friday afternoon. I phoned the hospital and eventually after quite a while managed to speak to a renal reg. who asked me to come in. We then went to Victoria ward which is the renal ward and had to wait for ages for some one to be able to look at my arm. Eventually the consultant came to see me (while waiting the nurses looked after us really well). She had a look and said that the vein had clotted which is ok but that it had become inflamed which was why it had become sore again. The ideal drug of choice is toxic to the kidneys so I can't take that so we just have to wait it out. My arm will get better it will just take a while. I am also having a reaction to the increase in statins and I am getting muscle pain so now I have to wait to have blood tests before I can stop them. Will it ever end!!!!! So more Drs and more blood tests this week. Ho hum! I am weary of being ill.

I don't often speak about Paul apart from telling you he is off to the opera or ballet. However he has been my constant companion and my bestest friend. He has loved me through the best and worst of times. The last nearly 3 years have been so difficult for him. I think it must be so much harder to be the one watching cancer and kidney disease attack the person you love than being the one it is happening to. He is so patient with me. Our lives have managed to continue because he has been there keeping everything going. He has walked every step beside me and without him I am not sure I would have coped. He is my tower of quiet dependable strength. Even on the toughest of days he has made me laugh and held my hand so very tightly. I am the luckiest of girls to be loved by him.

Tidying didn't quite go as planned yesterday. I emptied shelves and my desk and placed it all onto the dining room table and began to put it back, sorting as I went. But I ran out of energy and most of it is still there! Clearly it is not all going to go back but where to put it ......... ho hum! I need an organiser!

Today some more tidying (- think it is going to take a few days) and a visit to the rheumatologist.

More sunshine peeping through the clouds. Hurrah! Blood taken yesterday after quite a wait. I think the whole of the Reading area were having their blood taken! It was VERY busy. The nurse used the tiniest of needles and the blood dripped out but at least she managed to get it. We did have a discussion about having to use my feet which is very tricky and painful apparently. I think we will give that a miss! I had a lovely visit to Hobbycraft and bought more bits for projects.

My new sim arrived while I was out so I now have a lovely working phone. It is like magic - it can do everything except make a cup of tea or wash up! It is my new window to the world. I am very glad Paul is so good with gadgets because I would never have been able to sort it all out - it is so complicated. He loves the maps!

I am not at all sure what happened to my post yesterday I wasn't trying to shout at you! It just appeared that size and I can't make it any smaller.

Today - some sorting of projects and tidying of craft stuff so that I can find everything. I think I need boxes but until I have sorted my stuff I don't know what boxes I need!

My blood results are good from yesterday. My creatinine has remained low - which is wonderful. my Gfr is 19 - this shows the amount of kidney function and has to remain above 10 for me to stay off dialysis. Normal kidney function is above 60. I was 16 when I stopped dialysis so it has risen. However (isn't there always a however) my phosphate levels have risen so I must watch my diet more carefully. I suspect it was too much milk and yoghurt recently. Ho hum! I did love that pudding! The good part is that my potassium levels remain completely stable and at an acceptable level.

²² Because of the LORD’s great love we are not consumed,
for his compassions never fail.
²³ They are new every morning;
great is your faithfulness.
²⁴ I say to myself, “The LORD is my portion;
therefore I will wait for him.”

²⁵ The LORD is good to those whose hope is in him,
to the one who seeks him;
²⁶ it is good to wait quietly
for the salvation of the LORD.
²⁷ It is good for a man to bear the yoke
while he is young.

²⁸ Let him sit alone in silence,
for the LORD has laid it on him.
²⁹ Let him bury his face in the dust—
there may yet be hope.
³⁰ Let him offer his cheek to one who would strike him,
and let him be filled with disgrace.

³¹ For no one is cast off
by the Lord forever.
³² Though he brings grief, he will show compassion,
so great is his unfailing love.
³³ For he does not willingly bring affliction
or grief to anyone.

Thankful for new days and new possibilities. His compassion is new every morning. Though he brings grief he will show compassion. Those 2 things walk hand in hand.

I had a lovely sisters day yesterday. We should do it more often. It was great to catch up on news.

Today blood tests and maybe a little visit to Hobby craft while I am there as a reward for going for my blood test! Hopefully they will manage to take my blood despite the many restrictions on the places to take my blood now.

My new phone has arrived - without a sim! So I still can't make phone calls or text! It is frustrating that people can't do a good job - everything seems to have some little problem to accompany it. My new compression sleeves should have arrived yesterday - well they did but they had only ordered the hand ones not the actually sleeves which I need! So more phone calls and more waiting! I know everyone is busy but ......please just do your job!

I am loving seeing the sunshine this morning although it still looks quite cold. Soon be time to plant my first seeds and then I will know that spring is on its way.

I can see a slightly blue sky poking its way through the cloudy grey sky and that is just how I feel today. It has been a struggle to recover from the surgery to my arm and I have been a little bit grey but today I can feel a little bit of sunshine creeping in. It was lovely having Chloe home but she had to go back yesterday - ho hum! Children are always leaving! We had a lovely day shopping on Saturday although I was completely exhausted - as in couldn't even put sentences together tired afterwards! I now have SOOOOOOOOOOOOO many projects to get on with. At least I managed to finish one yesterday - a little owl. Hopefully I will post photos later as I am having a new phone today with a lovely camera. My old phone which I have loved for 3 years has decided that it doesn't always want to be a phone and doesn't make phone calls or texts and sometimes won't receive them either. Not much use. I am sorry if I haven't replied to a text you have sent - it is probably my phone deciding it won't tell me you have text me!

Today - some tidying of a very messy house, some cooking of biscuits and an afternoon spent with lovely people of a certain age. Tomorrow lunch with my sisters - lovely. Wednesday - blood tests - not so lovely as now they can only take blood from the lower part of my right arm or my right hand. I have to now protect my upper right arm and elbow in case I need a fistula and they can't use my left arm at all. Soon they won't be able to take blood at all! Friday trip to see rheumatologist. And that's the week gone!

So grey has turned to white! It does look very beautiful all painted white I must say and a great improvement on grey! yesterday I had my second attempt at church flowers. They weren't quite as good as my first attempt as I had help with the first go. But at least they look ok. The church looked so beautiful in its snowy setting. as I type the sun is just coming out and everything is sparkly - a reminder that Spring is on ots way with all its beautiful colours.

My stitches are now out and my arm feels SO much better. It had become very tight and itchy so I was glad to have them taken out although it was a bit tricky for the nurse. It looks less like a worm and more like a tiny caterpillar now! I think it will look much better once it has settled down. The swelling in my arm is slightly up and down - worse in the evenings but hugely better than before. So all heading in the right direction.

More hospitals this week - ho hum! Blood tests and a visit to rheumatologist.

This weekend Chloe is home and we are having a cold trip into Reading.

Its lovely to see her - she is very busy making now the sewing machine is mended.

Grey, grey, grey............................. enough grey! I am struggling this week to find joy only grey! I need to work through the grey and find .... yellow and orange and purple and pink and red and blue and lilac and ....................... the list continues. It is so easy to focus on all things grey.

I saw the physio on Tuesday - she fitted me into a little slot as she is away for a couple of weeks. She has ordered me a special compression sleeve and a glove to wear all day to reduce the swelling. This should help with the last bits of swelling and my arm may go back to normal. At least even as it is it is much more normal and I am not sure you would notice it now if you looked at me and didn't know. That is amazing! Tomorrow I have my stitches out so hopefully my arm will feel even better without them.

I am off to look for colour in my day!

This week has been some what tough. I have struggled with the pain and been grumpy and impatient. It feels like I take 2 steps forward and start getting into a routine and catching up on life and then wham bam something happens to stop it. I just want to do normal!

Despite all this pointless moaning I am getting better. My arm is less painful and I can move it more. I am now using 2 arms to do some things at least. By the evening it is quite painful again but it is improving. It has remained at just a little bit larger than normal which is fine. My hope had been to be able to get into my t-shirts and jumpers and mostly I can. It maybe that the physio can help me to get back to completely normal we shall see.

This week I have coffee with friends, some shopping, some stitches out, some cooking, some flower arranging, bible study and Chloe comes home for the weekend.

We have enjoyed lovely meals over the weekend thanks to my bible study ladies. Cooking with one arm is very tricky!

My youngest boy has kept me happy with his singing. He is good company and I love hearing him laugh.

I have discovered pinterest which is a site where you collect pictures on boards of all things you love. I love it - it satisfies my creative need when I only have 1 arm and can't create.

How beautiful everything looks in white! All sparkling. I am very glad to be tucked up in the warm though and grateful for no dialysis.

Papageno ventured out into the snow - very surprised by all this white stuff. He tried to dig it all away! He then walked around the garden shaking his paws after every step looking very frightened by all the drips landing on his head. He quickly decided that he needed to come back in and is now sitting at the back door miaowing at the snow! He would like us to make it disappear.

My arm is slowly improving - still quite sore and I am living on paracetamol. But it is better than it was. I am learning to manage with one arm. Hoping that we have no hospital visits this week.

mmmm - still very sore and now quite lumpy! My scar looks quite like a little worm creeping along my arm. Hopefully it will settle down. However my arm looks so much better no longer like an elephant arm. It is almost back to its normal size. Who would have thought it would be so quick. Maybe the pain is as a result of the lymph drainage - who knows. Just hoping it isn't the nerve being damaged.

Our poor neighbour has had a flood in her house. A pipe has split and leaked into her bedrooms and lounge and dining room. Everything is soaked. It is going to take ages to get sorted. So not the weather to have this happen. I am very thankful for my warm house.

Friday - and my arm is still very sore but at least it is the same size as yesterday. Hopefully it will improve over the weekend. I am pretty useless with only one arm! Also I am finding it quite difficult to concentrate on anything due to the pain which is very distracting - I have decided that I really don't do pain! I become pathetic! And impatient! And grumpy!

So all plans for weekend cancelled and I will go with the flow. If pain still here on Monday I will be complaining loudly!

Awoke this morning with a very sore but much smaller arm. I can't quite believe it but my arm has shrunk in the night. The consultant said yesterday that it might take weeks to see any change so I wasn't expecting that!

It was another long day yesterday - we left home at 9.30 and got back home just before 8. I was the last person on their list so waited from 11.30 until 4.45 to go to theatre. Thankfully I had taken plenty to read and listen to. The surgery was quite straightforward although I bled quite a bit. My arm is now nicely bandaged and very sore. I have to go back in 6 weeks to have it checked and to make plans for the other arm if needed in the future.

The nurse who looked after me after the surgery couldn't understand that I hadn' t had a fistula made and tried to give me instructions as to how to look after a fistula. She gave me a stethoscope to listen to the buzzing and I explained that it wouldn't be buzzing as it had been tied off. She just kept insisting that I needed the stethoscope. Then she gave me a letter to take to dialysis, which I told her I don't do. So she then said 'oh you will be doing that in a about 6 weeks when your fistula is ready'. I again explained that I had had my fistula tied off. It was only when I explained that I used to do dialysis and had now stopped that she seemed to understand what I was saying. I think she thought I was stupid and didn't understand fistulas! Once she understood she was then amazed and said she had never heard of anyone stopping dialysis except if they had a transplant.

Thank you all for your good wishes, thoughts and prayers. Think it might take a few days for recovery.

Well here we are hopefully last day of hospitals for a while. Thank you so much for all your messages this morning both text, email and facebook. I am feeling surrounded by your thoughts and prayers. They mean so much. Hopefully today will go smoothly. It does seem amazing to be having my fistula closed off. |I did expect to have this fistula for the rest of my life. It will be strange not to have the buzzing in my arm any more. I am not aware of it until I touch my arm and then I can feel it - the swishing of the blood as it pulses through the vein at high speed. It is almost exactly a year since we started using it in dialysis. It would be wonderful if this does sort my arm out or if it at least enables me to be able to wear a compression sleeve to reduce its size. We shall see.

I will let you know later how it goes if I can or tomorrow if it is too late when i get home. My appointment is 11.30 in Oxford for an afternoon op.