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!