Saturday, 31 December 2011

I have been thinking a lot about what i would write today - the last day of this year.About my plans for next year and all that I will do ............ and then I remembered its not about me. Its not my plans but His, its not my life its His

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Eph 3

I can have hopes and dreams but I must hold them lightly trusting that the creator of the world has all things in his hands. Just enough light for this day and no more.

My blood tests were better this week. Welllllllllllllllllll when I say better my creatinine was lower again so it looks like the antibiotics or the infection affected it. My phosphates were high - mmmm back to the diet again. However my potassium was fine despite quite a lot of high potassium foods. My urea was also high so I need to increase my fluids again.Drinking is tricky when you are busy!

Today we continue with the sorting - Paul is in a big sorting mood and keeps finding me things to sort and cupboards to empty! We will have a sorted house by the time he is finished! Not sure we are throwing much just reallocating it to different parts of the house!

May I wish you all a happy, healthy and peaceful New Year.

Friday, 30 December 2011

I wonder how you would answer these questions. I have found it very interesting to look back on the year and think of all that has happened. I made a list of all the things that I have done and although obviously hospitals feature most often it is still full of wonderful things. I am so grateful to God as I look back and realise how his hand has guided me and how so many of the things I have done have been joyful.

So many of the most precious memories involve my family and friends and I am thankful for you all.

20 Questions for a New Year’s Reflection

1. What was the single best thing that happened this past year?

Josh and Debs wedding

2. What was the single most challenging thing that happened?

Dialysis – not sure this counts as a single thing but it was the hardest part

3. What was an unexpected joy this past year?

I have experienced so much joy this year but the most unexpected was stopping dialysis. I will never forget the moment the consultant said I could stop or the tears in the eyes of my oncologist when I told him. I believed miracles could happen I just didn’t expect them to happen to me.

4. What was an unexpected obstacle?

More chemo in March

5. Pick three words to describe 2011.

Hard, joyful and thankfulness

8. What were the best books you read this year?

‘One Thousand gifts’,

9. With whom were your most valuable relationships?

My family, my bible study ladies, my work colleagues, my friends

10. What was your biggest personal change from January to December of this past year?

To learn to take each day as it comes and to look for joy in that day (I don’t always do it but I do try)

11. In what way(s) did you grow emotionally?

I am and always will be someone who wears her emotions on her sleeves, I laugh, cry and love easily!

12. In what way(s) did you grow spiritually?

I am more trusting in an awesome God

13. In what way(s) did you grow physically?

I have curly hair now!

14. In what way(s) did you grow in your relationships with others?

I think I have learnt to treasure all my relationships more and to tell people regularly that I love them

15. What was the most enjoyable part of your work (both professionally and at home)?

Being able to look after my house again – even if I don’t do it very well!

16. What was the most challenging part of your work (both professionally and at home)?

Letting go of work was very challenging

17. What was your single biggest time waster in your life this past year?

I hope I haven’t wasted too much of this year

18. What was the best way you used your time this past year?

Praying

19. What was biggest thing you learned this past year?

That miracles can happen

20. Create a phrase or statement that describes 2011 for you.

Thankfulness each and every day


Today I am looking's forward to a meal at a friends house. Chloe is looking forward to her boy being back.

Thursday, 29 December 2011

“Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body. But rather, to skid in sideways, thoroughly used up, totally worn out, and loudly proclaiming: WOW, What A Ride!" annon

My poor body is definitely not going to be a beautifully preserved body! But I am trying to live life to the full, grasping each opportunity and finding joy everywhere.

As ever I am reflecting on the year gone by and looking to the future one. I am making lists of all that I would like to achieve this year taking into account that I can't know what is around the corner. This is my last full year with a child at home - in 2013 my baby chick will fly and my baby girl will be a Dr - all being well. I want to make the most of time with them. I also want to remember to take time to 'stop and smell the roses'. As I get better and have more energy it is so easy to get caught up in the hurry of life again and I don't want that to happen. We have one life and I want to live mine well.

Wednesday, 28 December 2011

I am writing this from my new bed - at last. I am very pleased with it. The men travelled from Wales this morning to take the wrong bed away and put up the new bed - thankfully. It looks very lovely and as I do spend a lot of time in my room it is good that it is so nice. We just need to sort it out now and decide where to put things. Both Paul and I find it hard to throw things away - we are both hoarders!

We have had a lovely day. Kit and Shaun came for coffee before heading back to Stroud which was lovely. I miss seeing Kit fortnightly at dialysis. I am hoping to go to Stroud soon instead of her having to come here. Chloe and I then went into Reading for some retail therapy. I managed 4 hours which is very good (it did include lunch and quite long bus journeys as there were no trains)

Tomorrow is blood test day and hopefully see Josh before he goes back to Brighton on Friday. It was lovely to see him for 5 days but it is hard to know he is in Wokingham but not see him. I miss him. It is sad that children have to grow up and leave you. Hold onto your little ones tight.

Tuesday, 27 December 2011




How fast the last 3 days have gone. We have had a lovely time - family time is SO wonderful. I am very tired today and we are having a duvet day. Not sure I can manage a whole day in my jamas but we shall see! We have all had wonderful presents and shall be smelling wonderful for the next few weeks!!!!

Only one sad moment when everyone was opening stockings and I thought about how I could so easily not have been here. I am so
grateful to be alive and to be with my family. My thoughts go out to those who have lost loved ones this year or who can't be with loved ones for whatever reason. How hard that must be! Maybe soon those thoughts won't be with me any more and I will get on with life - living it to the full.

Friday, 23 December 2011

Ho Hum! We have started the day early with the delivery of a new bed - supposed to have been delivered yesterday. IT HAS BEEN DELIVERED TODAY AND IT IS THE WRONG BED! Not sure what they are now going to do about it as we have dismantled our old bed! And we are off to the ballet in a couple of hours. Paul has gone off for a walk to calm down! Why can't people do a good job anymore?

On a much happier note we had a lovely day yesterday enjoying the company of my children and friends, walking in the fresh air and seeing birds of prey.

Today we are off to London to see The Nutcracker. You can't get much more christmassy than that! We are then going out for Tappas. It will be a lovely day.

Then Christmas starts -
Christmas eve - cooking, church followed by a meal at Joy and Matt
Christmas day - Joy and Matt and family and our family here
Boxing day - at Joy and Matts with kitty and Shaun, Mark and the girls and us minus Josh and Debs who will be with Debs family

I am hoping to have enough energy to cope with lots of business.

May I wish you all a happy and peaceful Christmas with those you love. Thank you for being my friends and sharing my journey. My prayers for you all are that you will KNOW the one who we celebrate.

Wednesday, 21 December 2011

For to us a child is born,
to us a son is given,
and the government will be on his shoulders.
And he will be called
Wonderful Counselor, Mighty God,
Everlasting Father, Prince of Peace.

This is who holds my hand - who walks with me - who guides my path - who numbers my days. Wow!

Yesterday was cooking day and we have cooked our little socks off! By the evening I was exhausted but happy to have spent the day with my girlie cooking. We work so well together in the kitchen - it is a great joy. The fridge and freezer are now completely full. Just mince pies to do today.

Today my boy comes home and we will all be here. Tonight we are having a meal to celebrate all my chicks and my adopted chicks will be here. Before that we have beds to be made and tidying to be done - not sure if I will have enough energy for all I would like to get done. So will do what I can and leave the rest! Tonight our house will be creaking at the seams!

Monday, 19 December 2011

At church yesterday we had the reminder that - 'its all about Him'. I feel that the last 2 years have been all about me and its time to change. I am hoping that the next year can be all about Him. That my life can be outward looking not inward. That my time can be spent for others not wasted on me. This is a challenge when sickness still batters at my door and when my energy levels remain poor - but we shall see. I am looking forward to leaving this year behind and beginning a new one - hopefully with less illness.

My strictly party was wonderful with good company and lovely food and great dancing ( not that I danced of course) The nativity was lovely at church.

This week brings lots of business and best of all - my family all together. Josh and Debs come home on Wednesday and stay with us until Sunday evening - wonderful. We are going to see The Nutcracker on Friday in London which will be a real treat. Lots more sparkle!

Saturday, 17 December 2011

Feeling quite reflective today - I am sure you will say that I am always!!! But today maybe more than usual. I am reflecting on the past 2 1/2 years and feeling very glad to still be here. Who could have guessed 3 years ago what the next 3 years would bring and how changed I would be? We so take our lives forgranted and our health. We assume that the year ahead will bring us much the same as we have always had - but it doesn't always and sometimes it is a complete surprise. My prayers for the year ahead are that I will walk close to God trusting that He has all things in his hands. That is all and that is enough. I have hopes which include a year that doesn't involve so many hospital visits and include lots of visits to lovely places but that is all they are just hopes - the essential desire is that I walk close to God with whatever He has in store. And only He knows what that will be. And today that is ok. My hand in His.

Yesterdays ladies lunch was really lovely - great food, laughter and sharing our lives. These ladies have been such a huge part of my journey and without them life would have been so much harder. Thank you ladies for being wonderful - my fellow adventurers . Together we are learning persistence in prayer and believing that God hears our every request.

I had a lovely chat on the phone with a family friend yesterday. Edward if you read this I haven't got your new address. Please could you let me know it. I know you gave it to me last year but I have lost it again! My love to Jean for a speedy recovery.

Today my strictly strictly party - wonderful. We have sparkles and enough food to feed an army!

Thursday, 15 December 2011

Struggling a bit to write this this evening. My visit to the hospital was adventurous. My blood results are showing that my kidneys may be beginning to struggle a bit. My consultant suggested that I needed to have more words with them! It is possible that the antibiotics may be affecting them but that is doubtful. They will watch the pattern and see if it is just a blip. My blood pressure is also going up so I have more tablets to take for that. The interesting (not sure that is quite the right word) thought is that my swollen arm is more likely to be caused by a blockage in my fistula. I am therefore having surgery on my arm in January to open up my fistula - hopefully. If they can't do that they will remove my fistula - I didn't ask how that would happen! I would then need another fistula made some where else - ho hum! I don't think they know whether there is also some lymphodema there as well. I suppose we shall see when the fistula is sorted. While at the clinic a gentleman was taken ill and the resus team arrived running along the corridor. There was a lot of activity followed by the gentleman saying - 'get me off the floor I have a bad back' . I don't think he understood how serious it had been. I was glad to be going home at the end of all that.

I am feeling disappointed to hear that my kidneys may be struggling but we shall see. God is in charge and we know he can do amazing things. In the meantime I will make the most of my days and enjoy having 7 days a week to plan. I will enjoy Christmas without dialysis this year knowing that maybe by next year I will be having dialysis again.

Today I had a lovely lunch at school. It was really wonderful to see everyone all together and to chat to some. I miss them all SO much and am very grateful that they are still part of my life. They do wonderful food too.

Wednesday, 14 December 2011

Started the day with a blood test at Royal Berks. Managed to time it very well and didn't have to wait and the phlebotonist found a vein first go using a tiny needle and a butterfly. Then a shopping trip and now - needing a sleep!

I will probably not blog for the next few days except to update after my hospital visit tomorrow afternoon. Tomorrow I have school lunch and hospital visit. Friday ladies bible study lunch here followed by GP visit. Saturday Strictly Final party and Sunday Nativity in the morning and carol service in the evening. Lots of lovely things - as always hoping I have enough energy for it all.

I hope you all have lovely weekend plans and that you find time to stop and consider what Christmas is really about. Jesus given for us. Immanuel.

Tuesday, 13 December 2011

Yesterday was a super busy day - just like a normal persons day. I was so glad to be able to manage everything even if I did collapse into bed at 7.30 last night! I made 2 cakes, did the washing, went shopping, decorated 2 cakes, had lunch, went to Cameo, tutored, made tea, put away shopping and cleaned fridge. Wow! Not quite in that order! It is wonderful to be busy - last year I could manage about one of those things. I like this new normal.

Today I am having coffee with a friend, speaking to the GP on the phone and hoping not to have to go and see her, then meeting Ben in Reading for some Christmas shopping. Again a normal busy day. I may also have to do some tidying otherwise friend won't be able to sit down to have coffee!

I have posted my cards - yippee! Now to get down to wrapping presents something I left last year to the last moment and I ran out of energy - some people then didn't get their presents until September!

Monday, 12 December 2011

As ever I am thankful for new days. My arm seems to be getting better very slowly. It isn't so red and is slightly less swollen. I am getting used to feeling sick all the time. Hopefully this weeks hospital/GP visits will only bring good news.

Today I am making birthday cakes for our group from church for people who spend a lot of time on their own. . I am looking forward to going there this afternoon. It is good to be involved with outward looking things. It is so easy to become inward focussed when you are ill.

We can tell that Chloe is home as the lounge looks like a bomb site! Our dining room table has been taken over with making!

I am hoping to get our cards in the post today - they are sitting and waiting so you never know. Looking back on last year I was still writing them at this time. We have now had Papageno for a year. He arrived at this time last year and has become a vital part of our family. He brightens all our days. It is wonderful to be greeted by his lovely miaow when we return home or in the mornings. He has finished his tablets and is now fit again. Hurrah!

Sunday, 11 December 2011

My advent readings are based on 'the art of waiting' by Wendy Bray. What a challenge! You would think by now I would have got it. God's in charge and all things in His time. But no I am still learning patience - I am still learning that life will throw at me things that I don't choose and I must learn patience in those times. Yesterday I felt very frustrated by the antibiotics and feeling sick. I am anxious that they may be causing my kidneys to struggle and that scares me that I will have to go back onto dialysis. But I have a Father in heaven who knows all things and is in charge of the future. I just have to live in today and not worry about tomorrow. You would think I would have got this - maybe I never will - maybe it is life long learning.

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[e]?

28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, sayingChloe is now home for the holidays , ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matt 6


So today I am going to try living in this day and not worrying about tomorrow but leaving that to God.

Yesterday Paul's concert was wonderful. Full of great singing and some wonderful brass playing. I was SO grateful to be able to be there and not to be in hospital.Chloe is now home for the holidays apart from a brief visit back Monday and Tuesday to see her professor. This week is to be a week of hospital and GP visits, some making with Chloe, some cooking for the freezer and some Christmas meals ending with a sparkly strictly party next weekend. Sounds good doesn't it.

Saturday, 10 December 2011

I checked my blood test results at 2am! They are slightly higher particularly my creatinine which could be caused by the antibiotics. But not enough to be worrying - yet! I will need to be stricter with my diet again though. I am seeing kidney consultant on Thursday so will discuss these results with him then. I will also have another blood test on Wednesday. So it is going to be a week of drs. Appointments with GP on Tuesday and Friday, blood test at hospital on Wednesday and clinic on Thursday. Well that will keep me occupied!

I am so thankful to be at home and not in hospital. Today Chloe comes home for the holidays (with just a days visit back to Southampton one day this week). Paul is singing in a concert tonight which we shall go to watch. I am really looking forward to that.

I hope you all have exciting weekend plans

Friday, 9 December 2011

Ho hum!!!!! I rang the gp this morning to say I was now itchy and she said that I needed to be seen. To cut a long story short - I now have more antibiotics to add to the original ones, cream for my itching and I have had a lot of blood tests. The gp is concerned that my itching is due to my kidney disease not a drug reaction. So we shall see. Nothing is ever simple with me. More drugs with more side effects - lovely! Still anything rather than going into hospital.

Thursday, 8 December 2011

My arm is slightly less red so hopefully on the mend. It is hard to know as I didn't notice the redness before! However it is certainly not worse so going to leave it today and see what tomorrow brings. Hoping it doesn't get worse over the weekend! I am very grateful for the anti-sickness tablets as they are keeping the sickness at bay. I am still feeling sick but not being sick.

Yesterday was a very busy but lovely day. Shopping was successful and I managed to get everything I was looking for which was good. The school nativity was delightful. My favourite part was when one of the kings nearly pushed his camel over because he wasn't standing in the right place. They also got quite keen on walking around the hall and kept disappearing off the stage for another walk round! There was lots of waving to mums and dads which is always lovely. Our house group meal last night was very yummy. It was good to spend some time just chatting.

Today I have coffee with a friend and some resting - maybe finishing writing the cards. A good sitting job.

Wednesday, 7 December 2011


there are no ‘ifs’ in God’s kingdom,

His timing is perfect.

His will is our hiding place…..

Corrie Tenboom

So do I believe this or not? Is He in charge or not? Does He direct my paths or not? Those are huge questions and it is good to return to them again and again as life appears to throw more ‘stuff’ at me. And again and again I will say – His timing is perfect and His choices for my life are the best whatever I seem to think in the moment. I trust that He is in charge.

Yesterday I had my first antibiotics and then 20 minutes later threw them back up – a great start! I then had to wait until the next dose was due, take my anti-sickness tablets first and then take the antibiotics. This worked thankfully otherwise I think I would be heading for the hospital today. Unfortunately I have to take the tablets 4 times a day an hour before food. Ho Hum! I think I will need to set an alarm on my phone to remind me. I am really hoping that the anti sickness tablets work well as I don’t want to be feeling sick for 2 weeks.

Today – all being well, shopping this morning, school nativity this afternoon and Housegroup meal this evening. All lovely things to do, perhaps made a bit more tricky whilst feeling sick!

Tuesday, 6 December 2011

So lymphodema clinic this morning. Went through my history and I answered lots of questions. The physio then examined my arm and said that she thought I had cellulitis along with the lymphodema, This is an infection in the soft tissues and can quickly lead to a whole body infection. She told me to go straight to the GP and get high dose antibiotics. She also said that there is not very much they will be able to do for the lymphodema because of my fistula but she will contact the renal team and see what they can do to help. She is also ordering me a special soft bandage to wear. I went to see the GP and phoned the kidney care nurses to check what drugs I can take because of the renal implications. Nothing is ever simple. So I now have high dose antibiotics for 2 weeks. If it doesn't start working within 48 hours I have to go back and I may need to go into hospital for IV antibiotics. Ho Hum!!!! The antibiotics have side effects - of course - and so I will be taking other tablets to counteract the side effects. mmmmmm working hard to look for joy in this day! Thankful for my warm blanket and my lovely husband, for twinkly lights and my Christmas tree.
I am off to the lymphodema clinic this morning. I hope they are ready for me! I am not sure what they will be able to suggest - if anything but we shall see. Most treatments would affect my fistula and therefore not possible. But at least they should be able to advise me about whether I should be sitting with it in the air etc..... I am also off to the shops for a bit more Christmas shopping. Nearly there I hope. Last night I started the cards - they take a long time as I can't write for very long before my fingers get sore. But at least I have started!


Monday, 5 December 2011

Monday morning! I am feeling a bit all over the place today. I have so many bits everywhere and I don't know which to start/finish first. I need a plan! Or maybe I need an organiser! I am sure I will get through everything its just that it is a bit chaotic. I am loving all the sparkly lights and my beautiful Christmas tree. I have made my first mince pies with special mincemeat with less of the fruits I can't have. I made them very little as well so that hopefully they are not so bad for me!!!!

Chloe has her statistics exam today and then apart from meetings with her professor she is finished. She is staying in Southampton this week to go to Christmas meals and reviews. She will then be home at the weekend. I am looking forward to having her home and doing making.

Sunday, 4 December 2011

Busy day today. Cooking and cleaning this morning and then service at church this afternoon. A Time to Remember. It is so good to stop and think for a while of those who have died both recently and in the past. Christmas can be so busy it is good to have a time to be quiet within the business. Again a reminder that it could have been my family there remembering - I am so thankful it is not.

I am looking forward to the week ahead which includes the nativity at school, house-group meal and hospital appointment for my arm.

Saturday, 3 December 2011

Very tired again today - seems I can manage one busy day followed by one very not busy day! Ho hum! I shouldn't be so impatient at least I can now manage one busy day. Recovery is SO slow! I forget so quickly how poorly I have been and how amazing it is that I can do anything. This time last year I could manage one thing in a day and that one thing was usually tiny. The rest of the day was spent recovering. Yesterday I managed tidying, shopping, cooking, baking, flower arranging and making a wreath, bible study, washing, hoovering...... quite a normal day for most people but amazing for me. Today I have done - well nothing! Maybe I should share it out a bit!

In bible study yesterday it was good to be reminded that we worship an amazing God who does amazing things, and that prayer changes things. I, of all people, should never forget that. We can't understand his plans but he knows what he is doing. He sees the big picture - whilst we see only a glimpse here and now.

Well I had better be off and do something with my day. There are boxes everywhere - ho hum!

Friday, 2 December 2011

Wow! last nights concert at Ben's school was AMAZING. The boys are SO talented and we were treated to a wonderful array of different music. 4 of Ben's music group sang barbershop and it was brilliant. They were funny and beautifully in tune throughout. I was a proud Mummy. Ben's friend conducted the concert band as they played the music from Pirates of the Caribbean - it was fantastic we felt very proud of him too. It was great to see boys loving music.

Yesterday we put up our Christmas tree. I know its very early but I love Christmas and twinkly lights. I had a few tears as I opened the bag of decorations as when I put them away last year I did wonder if I would be opening them this year or whether my family would be opening the bag without me. (or not opening them as Chloe said because they wouldn't want Christmas) We had a chat about the importance of carrying on after someone has gone to honour their memory even though it is hard. We stopped to think about all those we know this year who are facing Christmas without someone they love, especially those known to us whose loved ones have died very recently. I am so thankful to be here and to be recovering - slowly.

Chloe came home yesterday afternoon to come to Ben's concert. It is lovely to have her home and she is using the front room as her revision base again - more exams on Monday.

Today - tidying after the mess I made getting Christmas out of the loft. A bit of cooking - I have found renal friendly cake recipes. And ladies who lunch and bible study. A lovely day!

Wednesday, 30 November 2011

Sunny Wednesday - hurrah. How nice to wake and see the sunshine. I am feeling better today - much less tired. Hopefully will be able to get things done off my to do list today. I am wondering how I ever managed Christmas and working!!!! Hopefully I will manage to get on with another project today.

Papageno is much better - hurrah! He has been such a poorly cat and our washing machine has been very busy after lots of little tiny accidents. Today he is off to the vet for a check up and hopefully will say he is much better. Phew - that was scary. We would have been SO sad if he had died. Paul has become very good at giving him tablets which is a great help.

Today I am popping into school for coffee with whoever is not striking. I am hoping to collect my bits and pieces which have been left there for the last 2 years. An acknowledgement that I won't be back to work. I think I have come to terms with that now.

My arm is still growing and yesterday I felt quite sad about it. It is such a visual reminder of the surgery which is usually not visible. Hopefully they will be able to help and it will get a bit better. It is only vanity though which is nothing. I am still able to laugh about it. As I have one skinny arm and one elephant arm!

I seem to be continuing with this blog now. I have got back into the habit of writing again. Mainly I seem to waffle on about my quite unexciting life. I do appreciate that so many of you come to read about it though. Remember to let me know about your lives too. I love hearing about you all.

I have just checked my blood test results from yesterday and they remain stable. My potassium is bordering the low end which is good and means I can eat a bit more potassium foods. My phosphates are perfect. which is wonderful. The diet is working well. The creatinine and urea remain stable. I am SO grateful not to be having dialysis.

Tuesday, 29 November 2011

Another sleepy day today. I continue to be very tired after the weekend. Tiredness is strange now and makes me feel like I have flu. all my muscles and joints ache and I am exhausted. However I have managed to go to the hospital for a blood test and make flapjack - hurrah I am allowed flapjack. Debz and I have finished one of my projects which I can now tick off my list! Bunting! If I ever mention making bunting again remind me what a tricky time I had making it last time! Still it will look lovely hanging up I am sure. Still list of projects to get on with.

Monday, 28 November 2011

Where did that weekend go? It went so fast yet we packed loads in. The hotel was in a perfect location for the theatre and for town. It was a bit 'old' and needed a bit of loving but it was clean and warm and served as a good base. We visited the 'German market' on Friday. Not quite sure what a German market should be like but maybe not like that! A lot of food stalls and not much else. Still it was lovely to be with Chloe and we filled the time with chatting. We went to see White Christmas in the evening with Aled Jones as the main lead. It was wonderful. It brought back many happy memories of singing the songs with my Dad and sisters. The production was great and they stuck to the storyline well.

Saturday was quite a grey day but lovely to see Chloe's house and meet some of her house-mates. I can now imagine her there. She has a lovely big room which, amazingly, was very tidy! We had a great lunch in a comfy restaurant where you could watch the world go by. After a sleep to recover we went to Chloe's concert which is a great mixture of jazz and gospel music. I loved it. The sound of over 100 young people singing is amazing - all organised and run by students - fantastic.

Sunday began grey but quickly became sunny with a chilly wind. Southampton often has that seaside, windy feel to it. I could even see the sea from my window in the hotel and the boats sailing in. Chloe and I went to a craft market based at the uni. It was wonderful - absolutely huge. With so many very original crafts and lots of ideas. We both came away wanting to 'make'. We then popped into town to have lunch and then back to the hotel so that I could gather up my things. By this time I was exhausted and wondered if I would manage the journey home. Thankfully the train was waiting in the station and I could get a seat (as later it was packed). Paul came and met me from the station and helped with the suitcase. I then watched strictly from the night before in my warm jamas and went to bed!

It was a really wonderful weekend and although exhausted today I am so glad that I could manage everything that I wanted to do. I even managed the 3 sets of stairs as the lift was broken in the hotel and stairs are not part of my lifestyle!!!! I did have to stop a lot and people who passed me must have thought I was pathetic!

So back to life - this week is full of Christmas planning, finishing cards, buying presents and the odd blood test. With quite a lot of resting to recover!

Thursday, 24 November 2011

Another grey November day. A quieter day today - full of possibilities. Tomorrow I go to Southampton for my first proper weekend away for over 2 years. I go on Friday and come back on Sunday - a real weekend! I am really looking forward to Chloe's concert on Saturday evening. And to seeing her house as I haven't seen where she is living this year and I can't imagine her there until I have seen it. I am also hoping to meet her house mates. I hope I have enough energy to do everything I would like to do.

Tonight we have Debz's sister coming to stay so we will have a house full of girls. I am looking forward to catching up with all her news.

Wednesday, 23 November 2011

Yesterday when out for coffee we saw 2 people who I knew from the school gates. They smiled said hello and asked how we were. Luckily (for them) we were on our way home so I just said - fine. I never quite know what to say now when people who don't know what has been happening ask me how I am. I am sure they didn't want to hear my life story but to just say fine some how doesn't seem right either. Occasionally I have said - 'I have been very poorly but I am much better now'. The trouble with that is they usually then ask - oh what has been wrong? And it is such a long story and to miss any bit some how seems to miss the opportunity of speaking of what God has done. So sometimes - I am fine is enough!

Sleep is still evading me. I am very tired when I go to sleep but I wake frequently and this week I have been waking in a panic. I have no idea what I am feeling panicky about I am just feeling panicky. It feels like there are things I need to do that I haven't done but I don't know what they are. Hey - ho! Maybe this is just part of the recovery journey?

Today coffee with 2 friends, some tidying, cooking and housegroup this evening all being well.

Tuesday, 22 November 2011

So here we are again - its thanksgiving week in America and we are reminded to be thankful. And I am SO thankful. I am thankful for all of you who have followed my journey and sent your love, thoughts and prayers my way. I am thankful for my family who continue to walk this way with me. And mostly I am thankful to my Father God who has given me this journey and never left me alone. I am amazed when I look back on this year. Although it should be the worst year of my life - it isn't, it is full of memories of wonderful things which have happened (don't get me wrong I don't want to repeat it) but I am thankful for so much that has happened. I continue to look and find the joy in most days with the occasional blip!

Today I am cooking for a friend, having coffee with another friend and going to parents evening. I hope you are able to be thankful in your day.

Monday, 21 November 2011

Monday and the week starts. I felt a bit panicky when I woke this morning thinking about all that the week will bring and whether I have enough energy for it all. After last week and feeling so tired I am aware that I do need to fit in plenty of rest but I so want to get on with life. I have so many more hours to fill! I have so many started projects and I need to get on with them all. At least many of those are sitting projects. I think I need some more lists! With maybe an overall list of my lists!

I am still struggling to drink 2 litres - my brain is over riding my drinking. So now we have a 2 litre bottle filled at the beginning of the day and we take out the fluid as I drink. That seems to be working better. 2 litres is a lot of fluid for anybody let alone someone who has spent for 16 months not drinking.

Hope you all have lovely weeks ahead.

Sunday, 20 November 2011

Lovely weekend. I went to the hairdressers on Saturday and changed my hair colour from salt and pepper to a sort of red. Not quite right but much better than grey. Then tea with Joy and Matt, catching up with their news and watching strictly. Today church with my biggest boy and his wife. We then spent the day with them. I was very proud of how they dealt with a crisis today. Its lovely to see them working together and finding solutions - supporting one another - a proper married couple. We had the opportunity to talk about forgiveness in 2 very different situations but they are learning the hard way but learning to put it into practice and not just to speak the words.

The week ahead is busy - lots of friends, cooking, coffee, a parents evening, a sleepover and ending with a weekend away to Southampton. I hope I have enough energy.

Friday, 18 November 2011

So lovely to be able to tell the rheumatologist that I had stopped dialysis - he was delighted and kept saying - how amazing all the way through the consultation. He understood the impact that would have on my life. His only concern was my arm and the possibility that the swelling in my arm might be caused by superficial blood clots as a result of the autoimmune disease. He has given me antibiotics for a week to treat it if it is this with the warning that if it becomes painful I must go immediately to a and e. I felt slightly disappointed to even think it could be more autoimmune stuff - I had hoped we had finished with that - but hey ho we will see. He has was happy to say that the scleroderma remains dormant. All being well I will go back in 3 months. The trouble with all that I have wrong there are no guarantees that they will remain in remission and they will be part of my life always. It is this that reminds me that I must go back to living each day as it comes.
I have just enough light for the step I am on and no more.

Thursday, 17 November 2011

I have seen the renal consultant today - I saw the senior consultant who was delighted for me. He is very pleased with my blood test results and feels that I should now be drinking 2 litres a day - how will I ever manage that? We looked at all my results and went through what they mean. He was very helpful and I now feel I know what we are looking at and what would concern them. We did discuss the future and basically with a bit of beating around the bush the answer is ...... he doesn't know! He is hopeful for the immediate future that I won't need dialysis but he can't say what the future holds and whether I will need dialysis. His hope is that I won't need dialysis for a very long time. We decided we would take that! The dietician was very helpful and told me I was a model patient! We have come up with a plan which we are both happy with. This involves taking all the rules and modifying them slightly. Slowly adding in foods and watching my blood results carefully. It was very strange being seen in a completely different clinic which will become another second home in future. So next blood test in 2 weeks and then all being well see consultant in a months time. Wow! A whole month without Drs.

Tomorrow I see rheumatologist - will let you know how that goes. As ever thank you for your kind thoughts and prayers.
Thankful for new days. Yesterday evening I was exhausted and all my joints ached. I think this is a sign that I have done too much. I am trying to fit so much more into my days and I think that my body is not quite ready for all the activity! I will have to put more rest into my agenda! However my house is looking tidier and my ironing cupboard is no longer vomiting! My washing is nearly caught up for the first time in ages. And we have had yummy new recipes each day for tea. Life is good.

Yesterday I stared the day with a blood count. I arrived just after 8 and they had already seen 47 patients since 7.30 - wow! They are very efficient and have now managed to take my blood from my arm using very tiny needles 2 weeks in a row - first time. I am very grateful for their expert ease as I hate being a pin cushion! I go this afternoon to the kidney clinic for the first time and hopefully we make a new plan. I am also seeing the dietician at last and hope that the plan from her is slightly less strict than I have so far set it. I have cheated occasionally with a couple of things but not many. I so love a plan!!!

Tomorrow I see the rheumatologist which will be good. He always makes me feel better - even when I didn't even know I felt unwell!!! He is so positive. He will be delighted to hear that my kidneys are recovering. He loves plans too!

I am looking forward to seeing Kit today and catching up on all her holiday news and house news. It will be so nice to chat with her - not on dialysis.

Tuesday, 15 November 2011

I am feeling very grumpy this morning - Paul has just left to go to the church where we have had a break in. How can people steal from a church? and they leave so much mess to clear up. I am stamping my feet!!!!! (well not really but metaphorically).

Yesterday was lovely - a very packed day but it was great to feel so normal. I fitted in 4 activities along with normal Monday morning stuff. Wow! Not long ago I could do one thing in a day and that was it. How quickly I have forgotten how awful that was. It is good to be able to go back and look at my blog as I have detailed my life. This day a year ago I was 2 days away from surgery and feeling anxious. What an amazing difference a year makes. Having more energy is making such a difference as I can plan so many more things and even sometimes fit in extra things that I haven't planned. I do get very tired by the evenings but that's ok.

I am still struggling to drink but it is beginning to get easier. Paul is very good at reminding me. I am feeling ok and hoping my blood tests show on Thursday some more improvements. It will be interesting to see new Drs and have a new plan. I have spoken to breast care nurses about my arm and have an appointment to see lymphodema specialists in early December.

Well I am off now - lunch out with a friend today and more tidying (it is a never ending task). Not sure how I had time to work before!!!

Monday, 14 November 2011

Monday morning and we may have a poorly pussy cat. He is very very quiet - usually very vocal in the mornings and usually desperate to get outside but he is just laying on the bean bag in my bedroom. Wish he could talk! He may have a sore mouth as we think he was stung by a wasp in his mouth yesterday. He is such a silly cat as he will eat them. He is insistent that his job in life is to rid us of all creatures. It keeps him very busy! We will be keeping an eye on him.

Yesterday was such a beautiful day with lovely sunshine. A beautiful October has moved into a lovely November although today is more typical - grey! My joints are noticing the change in temperature and are aching more.

Today - plenty of business. I will be tired by this evening.

Sunday, 13 November 2011

How lovely to wake to see the sun trying to peep through the clouds. Grey days are hard work! We are already nearly half way through November - where is the time going? Christmas will be here all too soon.

I am struggling to drink enough! Having switched off the messages to my brain to drink when I am thirsty I am finding it very hard to switch them on again. I don't drink when I am thirsty - in fact I tell myself not to drink then. You would think it would be easy to turn those messages on again but no! When I couldn't drink I used to imagine being able to drink whenever I liked!

It is so lovely to have the week stretching in front of me. I have lots of lovely things planned, lunches with friends, coffee out a couple of times. Kit maybe coming on Thursday which will be great as I haven't seen her for ages and I am really looking forward to seeing her Africa photos. I also have 3 or maybe 4 hospital visits to fit in. A blood test on Wednesday, the new kidney clinic on Thursday, Rheumatology on Friday and maybe a visit to the breast care nurse about my arm. Hopefully one week soon I won't have any hospital visits - you never know!

We have booked our first holiday for next year - yippee! I can't quite believe that we will be able to go away - we shall see.

Today church - remembering and roast dinner - yum.


Friday, 11 November 2011

11.11.11 - and at 11 we will stop and remember those who have given their lives for our freedom. I can't imagine what it must have been like to see your boys go off to war (or still is). I read this morning about a family of 8 boys who all went off to war and 5 of them died. How sad. I am so grateful that my boys don't have to go.

My input/ output is interesting and does suggest I need to drink more - wow! I am finding it very hard to drink more as I am so used to curbing all messages from my brain that tell me I am thirsty. I am really struggling to drink a whole cup of coffee. It feels very wrong.

Yesterday I noticed that my left arm is swollen. This is not a good thing as it could suggest lymphodema. This is caused by an increase in lymph in my arm which can't drain as I have no lymph glands under my arm. This will be very difficult to treat as I have my fistula in that arm too and can't wear compression bandages which is the usual treatment. We are going to watch it over the weekend and I will keep my arm up where possible and see if it improves otherwise I think it will be another trip to the hospital - ho hum! There is always something!!!!

We have a quiet weekend planned which is a good thing as I am quite tired still after our London trip. Today bible study and ladies who lunch.

Thursday, 10 November 2011

Manon was truly beautiful yesterday. I was particularly struck by the dying scene at the end. It was so poignant and so very beautiful. The way the ballerina managed to drape her body and the emotion of her lover as he held her in her last minutes. I cried from the beginning of the ballet when I was so happy to be back at the Royal Opera House watching a real ballet. Not one recorded. Then at the end as you can imagine I cried lots! People around me must of thought how soppy I was !!! We had a lovely tappas meal ( Paul's first) which we both really enjoyed. Little dishes of different things so suit us. We managed to just miss the student protest which marched down The Strand just after we had walked down it. We could tell by the helicopters hovering over head and the large presence of police everywhere. I arrived home absolutely exhausted. I did manage to walk from Waterloo to Covent Garden and back again as the buses were cancelled due to the protest. Today I am regretting the walking!

I started today driving to Royal Berks at 7.45 to have my blood taken. Its a good time to go as the traffic is still not too busy and you can get a parking space. Its also a good time in the path lab. I only had to wait 5 minutes to be seen (my first time having my blood taken from a vein in nearly 16 months). The phlebotonist did a brilliant job using an old fashioned syringe and a needle rather than the new fangled bottles. I then had a lovely cup of coffee as a reward!! It was very strange going and buying my own coffee rather than being brought it in dialysis. It is amazingly busy at that time with lots of coming and going.

I then returned to the hospital to see the registrar in the afternoon - unfortunately he was still in Windsor! Ho hum! Eventually they found him and the nurses in dialysis reported my blood tests to him down the phone. My tests are mostly looking good - my diet restrictions are working. However a couple are creeping up and he thinks that is due to me not drinking enough!!!!! Goodness I feel like I can't win! So I am doing an input- output chart for 24 hours. I will have another blood test next week before going to the Kidney care clinic - sometimes called the low clearance clinic. - not a good name.

When my results came back today and they weren't as perfect as last week I felt quite anxious as I am beginning to realise how sad I would be to go back to dialysis now. I so love having more time and am really enjoying feeling normally tired rather than yucky every other day. In dialysis I so felt for the patients all having dialysis. They are really lovely and very happy for me but I know they wish it was them.

Wednesday, 9 November 2011

London today - yippee! Paul and I are off to see the ballet Manon. I am really looking forward to going. I have so missed being able to go up to London regularly and have felt sad when Paul has gone on his own. We are so lucky to live near the station and London is so easy to get to. Seeing the ballet was something I thought a lot about when I was feeling so ill last year. There were times when I thought I might never be well enough to go again. I am hoping to do a bit of Covent Garden browsing too - if Paul can bear it!

Yesterdays business was great although I was very tired by the evening. I seem to reach a point where I switch off and can't cope with any more - I used to be able to just keep going before. It is good to be reminded that I am not better yet and that I still need to be careful. However it is so lovely to be doing so many normal things. I do love my life.

Our new sofas arrived yesterday (I will try and take photos later) and they look so lovely. Its great to have one room in the house which is tidy!

Enjoy your Wednesdays.

Tuesday, 8 November 2011

Busy day today - 2 x coffee with friends! New sofas being delivered and some cooking - lovely. Not what you would expect from a kidney patient! So much better day planned than dialysis. I am getting quite tearful at the moment as I come to terms with what has happened. I am so grateful to have stopped dialysis. I can't tell you the change it has made to my life already - just in 2 weeks. The biggest change is not having to cope with feeling rubbish 3 days a week. That is a lot of time feeling yuck. Every day I am doing more and fitting more in. I am off now to start my day.

Monday, 7 November 2011

Monday and the week stretches ahead of me. It is so lovely to have so much time to plan. Although I have only gained 3 days a week it feels like much longer as it makes all the days feel better as I am not waiting for the bad days on the good days. If you see what I mean. Before I had to fit everything in on my good days including all my coffee outings and lunches etc.... so there was less time for little jobs here and there. Even on my hospital days I can do other things as I don't feel rubbish afterwards.

Yesterday was lovely - great church although I did cry a bit. I am beginning to come to terms with what has happened and amazed that God has chosen this new path for me. I have always believed He could make me better I just thought He wouldn't choose to - how wrong was I?

We also did a bit of twinkly light buying as last years ones got damaged so I am now the happy owner of white lights twinkling in the lounge and multicoloured in my bedroom. I love twinkly lights.

Yummy roast dinner last night - although I am missing sprouts and gravy. I must get around to making my own gravy now I can have it from a fluid point of view just need to lower the salt content. I am looking forward to seeing the dietician on Thursday and finding out what I can and can't have.

Well I had better be off to start the day - rather belatedly. I am so enjoying not having to rush in the mornings but I think I do need to have some structure! Today is a day for bits and pieces!

Many people in my thoughts and prayers today facing results of tests, recovery from illnesses and accidents, having chemo or travelling difficult paths.
Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Eph 3

Sunday, 6 November 2011

Lovely nothing day yesterday! Spent some of it in my jamas but couldn't quite let myself spend all day in them! I am slowly increasing my fluid - hesitantly as I so don't want to get fluid on my lungs but all seems to be ok so far - I am at a litre now.

Today we are off to church and roast dinner later. Then planning the week ahead. How amazing to have so many days to plan! Just Thursday at the hospital with 3 separate visits. The rest of the week is mine. We are off to London one day to the ballet, lunch with a friend, out for coffee etc... all sounds lovely. Bit of tidying and cooking in-between. Perfect! I have to be careful to pace myself though as I am getting very tired without my 4 hours 3 times a week of lying still! I think my body is quite shocked not to be doing dialysis. I have some sitting projects to do so must fit them in around my activities so that I don't get quite so tired. It is hard to pace myself though as I just want to get on with living!

Enjoy your Sundays.

Saturday, 5 November 2011

Saturday - my first Saturday without a hospital visit (except for Josh's wedding) for over 16 months. Wow! I am having a jama day as I don't have to do anything! That is amazing. I think I am beginning to get over the shock and feeling more peaceful about it. I am beginning to fill my days with plans. I just need to remember that although my kidneys are recovering it is early days and my energy levels remain small. I had my first injection at home to help my body produce red blood cells. This will make a big difference once it works as it should take my levels into a normal range and keep them there for the first time since I became ill. The hardest part of giving myself the injection was taking the top off the needle!!!! It is an amazing service that will deliver the drugs to my house every 6 weeks in a special cold van and will take the old needles away. Sounds great - hope it all works out.

I have booked a hotel for my first weekend away - yes a whole weekend Friday to Sunday - yippee! It is in 3 weeks time and I will go to Southampton to see Chloe sing in a concert. I have been unable to go for the last 2 years so I will really look forward to hearing them sing. I am also hoping to go to the theatre while I am there and visit the Christmas market they have. How lovely! Hopefully my blood will be better by then and I will have more energy.

I hope you all have lovely weekend plans. Don't take them forgranted we are so lucky to be able to get about and choose what we do, not tied to a hospital bed.

Friday, 4 November 2011

I am feeling quite odd - like I have landed in a foreign land. I had become used to being a kidney patient who needed dialysis and a cancer patient who needed chemotherapy. But now - I am still a cancer patient and a kidney patient but I am in recovery no longer needing the treatment that I had. The rhythm of my days has changed and it feels strange. Don't misunderstand me I am SO grateful that my kidneys are recovering and that i have finished treatment for breast cancer but I now have to be a 'new me'. I also can't know on either count if this is for ever or just for a time. I am certainly learning hard to take one day at a time and not to look to tomorrow but to make the most of today which is all I know. I am also not completely better I still have little energy although I am trying to do so much more. I get frustrated that I am now not 'well'. Again I need to take each day as it comes and learn to be patient - ho hum! I am still learning the lessons of patience - you would think I had learnt by now - but no I am a stubborn creature!

Reading in a blog today 'God’s purposes are not for me to understand His plans: His plan is for me to understand Who He is.' Ann Voskamp. How true this is - it is not for me to understand why He let me have 3 major illness in the space of 2 years and then allowed me to recover but His plan is for me to know him in this. To know in the depths that HE is there holding tightly to my hand and walking the journey with me. That was my desire when I started the journey and remains my desire now. Faith is this unwavering trust in the heart of God in the hurt of here. Unwavering trust all the time though I don’t understand all the time. Ann Voskamp This is it - unwavering trust all the time even though I don't understand but I trust that He knows. His ways are not our ways.

Today I have ladies who lunch and bible study followed by food shopping for the weekend. Chloe returns to Southampton today - I have been spoilt by her company for the whole week. I am so glad she has been able to share this week with me. What feels like my miracle week.


Thursday, 3 November 2011

I arrived at the hospital with mixed emotions today, for 16 months it has been my second 'home'. The staff and patients have been my fellow companions on my journey and I will miss them. It is also a place that I feel safe. However my journey is taking a new turn.

I had my blood test at 8am and saw my morning companions. It was good to be able to chat with them and let them know what was happening. They are all so pleased for me and so understand my amazement. They also know first hand the change this will make to my life. I was sad to say goodbye. It was also the last time I will use my fistula and I will go back to the struggle of finding a vein.

I returned this afternoon to see the consultant who was all smiles. She is delighted with my blood results which remain stable. We discussed what happens now. I am to have one more blood test in a week - yes you heard right a whole week until I need to go back. I will then be passed to the Kidney Care Team who will take over my care. One of the nurses came to see me this afternoon to explain about a drug I now need to inject myself with which has to be delivered to our home. She was lovely and again said what a surprise it is that I have recovered after all this time. Because this is almost unheard of they have no way of knowing if this is temporary or will be for ever. Their advice is to make the most of it now and live a day at a time. Sounds familiar!!! This is how I have been living for the last year! I will continue to treasure each day and make the most of it. Although I can't help thinking of the possibilities of holidays!! The other great news is she has increased my fluid intake again. I feel slightly scared by that as I so don't want to fill up with fluid but it should help my kidneys so I will slowly increase to the new amount of 1 1/2 litres. That sounds so much more than 750mls. Wow!

My life has changed so quickly.

Wednesday, 2 November 2011



What a great quote this is - delicious ambiguity! To take the moment and make the most of it. You can never tell what is around the corner so how important it is to make the most of this moment right now. And I am! Each day feels like a gift right now. Even with diet restrictions and lots of hospital visits I am making the most of today grateful for each and every moment I am not doing dialysis. It is lovely to have the sunshine to accompany this joyful time. I am trying not to hope too much but it is hard not to as the days pass. I am learning - slowly - not to know but to go with the flow!

I am not seeing the consultant today as she was too busy but I will go at 8 tomorrow to have a blood test and then back to see her at 3 in the afternoon. Then we will have a plan - hurrah! Thankfully I have been able to drive myself backwards and forwards to the hospital as I have been going every other day - even more than usual.

Today more tidying - I didn't really get much done yesterday. I wore myself out shopping! But at least I can now do a bit each day.

Please could you be praying for my friends husband M and for their family.. He came off his bike on Sunday and has broken his back in 5 places. Today he is hoping to have a back brace fitted. It is all so sudden.


Tuesday, 1 November 2011

Well here we are my first week without dialysis and my first dialysis day and I am not going to the hospital. I used to strongly dislike Tuesdays, Thursdays and Saturdays. And now .....! They will be like gift days.

I am struggling to understand who I am now. For over 2 years I have been ill. Hospitals have been the centre of my world and I was only alive because I went to hospital. Without them I would have died very quickly. Now, although I still need to go and very regularly, it would not mean death if I didn't go, I could just go the next day. My life is no longer shaped by the hospital and that feels very strange. What a difference a week can make!

It is interesting that when I became ill I never really thought 'why me' but now I strongly feel 'why me'. Why should I be the one who recovers when so many patients are left on dialysis? Don't get me wrong I am SO SO grateful that it is me. Dialysis was the hardest thing I have done of all the hard things over the last 2 years.

Thank you to all of you who are thinking and praying for me. Please carry on as we remain in this in-between land. My kidneys do seem to be trying very hard. I can feel them chugging away (not painful but aching) and I am visiting the little room much more. My blood tests have remained stable - almost unchanged from Thursday which is amazing. But this does mean that my kidneys are very vulnerable to anything which can further damage them. I have to be very carefully about any tablets I am given as many normal things can damage kidneys. No ibuprofen, many antibiotics, even the blood pressure tablets I take have to be controlled very carefully. My blood results will be monitored very carefully and adjustments made to all my tablets and my diet. However this is a small price to pay for no dialysis.

Today I intend to spend my day being a mummy - cleaning the house, doing food shopping, washing and cooking. What a great way to spend my day! I am so grateful that that is what I can do today. For so long I was unable to do that, it is wonderful to now be able to. Please don't take these things forgranted we are so lucky to be able to get around, to have the energy to complete even simple tasks (still my difficulty is energy levels) and the freedom to take yourself places!

Monday, 31 October 2011

Monday afternoon. Blood tests from today back. Still fine. My kidneys are working hard! I have now moved from stage 5 kidney disease into stage 4. There are 5 stages - only in the 5th stage do you need dialysis. I saw a renal registrar today who was very very helpful. He checked me over and said that I am not carrying much fluid - which is amazing. He gave us lots of very helpful information about chronic kidney disease and many things to be careful about. Although stopping dialysis is life changing the changes to my diet, medicine, etc is also life changing (maybe in not such a good way). I now have to get my head around the other changes that we will have to make but none of them will ever be as hard as dialysis. I am still walking around in a dream - I can't believe this is happening to me. Maybe one day soon it will dawn on me that dialysis is finished. I am so thankful to God that he has allowed this. I continue to take one day at a time and wait and see. Although I must say I am now beginning to plan - holidays! Wow! I did think we might never be able to go on holiday again.

I see the consultant on Wednesday and then transfer to pre-dialysis clinic probably for twice a week blood tests to begin with, moving to weekly and then fortnightly eventually to monthly. How strange will that be after going to the hospital at least 3 times a week for 16 months. It has become like my second home!

This week I have very few plans in case I have to rush to the hospital but after this week I will be able to plan for 7 days a week instead of 4. So many more hours to have fun in!!!! Maybe I will eventually have a tidy house again. Goodness me! Although i think I will have to spend even more time cooking in order to be able to eat a variety of different foods which have reduced phosphates, potassium and salt.

Sunday, 30 October 2011


Sunday - still no dialysis. My blood results yesterday were very promising. My creatinine levels are almost unchanged from Thursday suggesting that my kidneys are trying very hard. However my phosphorus levels are rising which means that I have to go on a special diet. The renal diet is quite weird as it is not like any normal diet. At the moment my potassium levels are ok but if i add that into the diet in then becomes very strange. At the moment I have to reduce or cut out
  • milk, yoghurt,ice cream
  • cheese except goats or cream cheese
  • no brown rice, bread or pasta
  • chocolate
  • nuts
  • self raising flour and baking powder (so no to most cakes and biscuits)
  • pate and any offal
  • seafood
  • peas and pulses
  • what looks like a random list of vegetables!
  • cola
  • sausages, ham,
etc etc..... I am also going to limit tomatoes and bananas and oranges and soak my potatoes for 2 hours before eating to help keep my potassium low. I also have to boil veg and not steam. There are other things which I have forgotten at the moment. This is going to be quite a change in my diet and feels at the moment that if I like it I probably can't have it!!!! Still it is a fair exchange for not having to do dialysis.

I am still in shock and can't quite get my head around what is happening. My mind is whirling and I am finding it hard to concentrate on anything. It feels so impossible that this has happened. Tomorrow I will go to the dialysis unit maybe for the last time before being transferred to the care of the pre-dialysis team. Wow! Who would have believed this time last week that I would be saying that this week. Of course it is still early days and it could all change at any moment. However I am now hoping!

Today - church and cooking this evening for everyone my first proper renal meal!!! I will have to plan meals very carefully from now on. Probably no going out for meals for a while until I can work out what I can and cannot eat. Paul will be happy with the money saving! Maybe it would be better if I didn't eat for a while - that would be the safest idea!!!!

Thank you so much for all your texts, emails and messages. I have, as ever, been amazed by your support. I will continue to let you know what is going on and value your thoughts and prayers. I love the thought that so many of you are walking around with many parts of your body crossed for me - a very funny image!