First chemo done - tick! I am feeling ok which is a blessing. Long may it continue! It was rather a long time of waiting yesterday as it took the man on his motor cycle from 6am until 3.30 to get from Stockport to Reading- not sure where he stopped on the way!!!!! So I didn't start my chemo until after 4 pm. But it all went smoothly no reactions which was good. Everybody came to have a look at this new drug! Even my consultant. It was good to see him and we chatted about why 6. He is very relaxed about how many doses I have - we have the funding for 6 and if I can have 6 that would be good but only because 6 might be better than 4 - no evidence just a feeling! He is also open to 4 then a gap, a wedding and then 2 more so we will decide nearer the time. Depends on the side effects.

Today dialysis with T and a different nurse needling me as my nurse is on leave. This will tell how my fistula is getting on. The fistula nurse is on standby to come and help if we get stuck. I am really hoping it will go well.

Also today coffee with a friend - I am looking forward to seeing her.

The day for more chemo has arrived. I am glad to get on with it, although I am not looking forward to the side effects. I think it is harder this time as I know what to expect. But hey ho 3 months and it will be over. I am resigned to having 6 lots now if necessary. I don't want to ever regret not doing it.

My needling went well yesterday. The least painful yet. I had a visit from the fistula nurse who checked it all and feels happy that everything is going well. The pressure was checked again and all is fine. So we are on the right track. On Thursday I will have a new nurse needle me as my nurse is on leave. This will tell whether the tracks are now established. The renal consultant also came and decided that she thinks that the ECG is showing damage from my blood pressure. We are going to try new tablets and see what effect that has. It is difficult to know as I still can only have my blood pressure taken in my leg. Unfortunately the damage is now done and can't be undone but we can limit any more damage. i did ask her if I could reduce my time but she wasn't keen saying that 4 hours is best - ho hum!

I have just had a phone call from the hospital to say that there has been a problem with the chemo drug. When it was made up yesterday they detected a small particle of rubber in the tube. This made it unusable. They had no more of the drug to make up so they then had to search the country for it. Eventually they found some in Stockport where it has been made up and is being couriered to Royal Berks today. Wow! I feel privileged that they have put so much effort into sorting this out so that I can have the drug today. All things in his hands.

I am in need of a lift back from the hospital tomorrow evening. It will be at about 7pm. If anyone can help out that would be wonderful.

OK so my plans don't seem to be other peoples plans. I thought it was all going well. 4 chemos and be finished 1st June with 5 weeks to recover. Sounds just right ....mmmmmmmmmmm. I received a letter in the post yesterday saying that the chemo was sorted for this week and the plan was to have 6 doses. 6 - yes you read correctly 6 that is not my plan and not what we agreed. I screamed at the letter - enough! I am struggling to accept this. It would mean that I would have the last chemo the week after Josh's wedding. NOT MY PLAN. Once I had calmed down and talked it over with Paul and Chloe I have decided not to do anything rash - like walking into consultants office and shouting NO WAY!!!! I will see what the side effects are like after this first dose and then discuss it with him. It may be possible to have a gap between doses 4 and 5. It is so hard to know what to do as going to Josh's wedding is my priority and I so want to enjoy that weekend. But I don't want to regret not having the treatment and the disease coming back. I also want to be able to go to Chloe and Ben's' weddings one day. Sometimes life is rubbish!

Today - dialysis this afternoon - a bit later than usual so that I maybe able to see the consultant to discuss what is happening to my heart. I am also hoping to visit Tescos to get bits and pieces ready for the chemo and sickness again. I need to try and maintain my weight better this time. I can't loose another 2 stone as I will turn into a skeleton!

I had a lovely day yesterday, coffee at a garden centre and a visit to school and then coffee with a friend later catching up.

Tomorrow looms large - just want to get it over and done with.

Josh continues to train for the marathon. He is running on 11th April and hoping to raise £1,000 he still needs some more sponsors to reach this target. If you feel able please go to his just giving page and sponsor him. It is for an amazing cause - Cancer Research which is working hard to eradicate cancer. Thank you very much for those of you who have already sponsored him. Just 2 weeks to go.

Looking forward to coffee with friends today.

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josh's page

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Today has been a really lovely day. Started with church and seeing lots of friends then lunch out with my lovely husband. Great food and a cosy corner in the restaurant. Then a beautiful drive home in the sunshine. followed by phone calls with my older children. Josh who is having to rethink their honeymoon as they were going to Japan and Chloe who learnt to ride a bike today - hurrah! Congratulations to Ed for managing to teach her where we failed! Reversing around a corner next!

Tomorrow brings a non dialysis day and coffee out with a friend and later coffee in with a friend. Lovely.

Yesterday dialysis went well - 2 blunt needles. But I took an hour to stop bleeding (usually takes 15 minutes) so now more investigations - ho hum! Nothing is simple. I am feeling anxious about the chemo and really praying that the side effects aren't too awful. 3 months to go.

Chemo is going to start on Wednesday - the sister from the chemo ward phoned me yesterday. The consultant had jumped through the pharmacy hoops and had arranged it all. Yippee! Or not so yippee when I think of the next 3 months. But then it will be done. I have managed to put on about 4kgs in weight which is good and I am hoping that I won't be so sick on this drug so maybe eating will be a bit better.

Today Paul is going to a 'singing' day with his choir so R is taking me to dialysis. I have a film to watch and a book to finish reading so hopefully the time will pass quickly.

Yesterdays bible study was great. We were studying a lady from the Old Testament called Rahab - it was amazing to see how God uses the 'nobodys' of this world to bring about his purposes. He sees all things from such a different perspective to us - he sees us in the light of eternity and our lives are just a blink of the eye and yet he uses us for his plans - wow!

Chloe and Ed popped in yesterday afternoon for a very short time. It was lovely to see them. Chloe was very excited as she had seen a baby being born on Thursday. Medicine at its best!

I love sunshine (as you may have gathered). A day feels so different in the sun. Yesterday I was frustrated that I had to go to dialysis in the sunshine but today I don't - hurrah! Maybe a little walk today and enjoy the feel of the sun on my skin.

Today brings ladies who lunch and bible study. Chloe and Ed are popping in to collect stuff left last weekend before going to Ed's.

I feel a bit like I am in limbo waiting for the chemo to start . I am still waiting to hear that it will start next week. There were some hoops to jump through first - hope the oncologist has managed to jump through them!

I had a chat with a junior Dr yesterday about my heart. Not much to report except to say that it looks like the muscles of my ventricles maybe enlarged which could be due to many things. Dr has emailed my renal consultant and hopefully she will come up with a plan. I feel a bit sad that another major organ in my body is being affected by all that is going on - not surprising it is my heart I suppose but I would so rather not have to have problems with my heart. However it is a department in the hospital that I haven't visited so I am sure it will be interesting. Another learning opportunity for Chloe!!!

I am very sorry for not posting this morning. I had a physio appointment with a new physio and then Kit arrived to take me to dialysis.

Dialysis was fine although we continue to discuss the fistula and whether we should start a new button hole. Ho hum.

For results of yesterday see last post. Thank you for offers of lift I am now sorted.

I had a lovely evening at book club and I felt really well. Thank you to L for having us. I am so grateful for whoever gave me their blood. It makes such a difference.

Today getting my head around starting chemo and getting ready for the side effects. It is harder this time knowing what I am probably facing but 4 doses and I will be finished my breast cancer treatment almost exactly 1 year after I started. I should then have 5 weeks before Josh's wedding, to recover. All being well. I am looking forward to knowing what my life will be like when I just have to 'do' dialysis.

So here we go next journey starts. The funding has been approved for the chemo and all being well I should start next Wednesday 29th March. This has to be approved by RBH pharmacy as this drug has never been given at Royal Berks. I am so glad to be getting on with it. It means that I will have 5 weeks after last chemo before Josh's wedding. The likely side effects are sickness, hair loss, diarrohea, nerve pain in hands and feet, damage to finger nails and toenails (possible loss of nails) sore mouth and nasty taste etc..... mmm nice!! All should be treatable and I can have a decreased dose if I can't tolerate the side effects. So in 3 months we will be done.

On a slightly concerning note I had an ECG today to prepare for my annual review with the renal consultant and it shows an heart abnormality. We are not sure what this means and I will ask to discuss it with the consultant on Thursday. I did ask the oncologist and he suggested it could show that I have thicker heart muscles which could be as a result of the anaemia. It looks likely that I will need more tests and a possible referral to a cardiologist. We haven't visited that department yet so that will be interesting. Please be praying that the solution to this is simple - not sure I can cope with much more at the moment!

On another note I am still looking for a lift to Royal Berks on Saturday if anyone is around. Thank you.

I am a mum with cancer and kidney disease and an autoimmune disease! Sometimes it makes my children the parents! Ben sat with me last night when I was feeling yuck and chatted and sang to me while I lay in bed, reminding me that tomorrow I would feel better. It is the wrong way round.

Yesterdays dialysis went well although it felt long. I had 2 units of blood and today I am a pink lady! The needles went in well and I saw the fistula nurse who is pleased with how they are going again now. The next task is to be able to have someone else able to needle me as that is when it seems to go wrong.

Today chest xray and ecg ready for my annual review of my kidneys - this is happening in April (not a year until June) and my appointment with the oncologist so hoping and praying he has news of funding. Just want to get this chemo done and dusted.

So another week begins and another week of hospitals. I am looking forward to having the blood transfusion today and feeling better. I am quite puffed doing even the simplest things. I am really hoping we can get the chemo sorted tomorrow.

We had a wonderful weekend with everyone at home. Hopefully I will be able to get the house sorted again once I have my blood.

Needling was good yesterday - hurrah! A bit sore but the needles went in well. One of the nurses also checked the pressure in my fistula and all is well there too. So the journey continues - hopefully the buttonholes will develop well now. Dialysis went quickly with my companions, rugby and a game of Chinese chequers.

They have decided after a bit of a mix up that I need a blood transfusion on Monday so I will now have a busy hospital week. I am in need of a lift to the hospital leaving here at 1.30 on Monday if any one is available please let me know. I also need a lift on Saturday leaving here at 11.30.

The week looks like this

Monday - Transfusion and dialysis

Tuesday - X-ray, ECG and appointment with Oncologist

Wednesday - PIC line and possible GP appointment

Thursday - Physio and Dialysis

Friday - rest!

Ho Hum!

I had been planning to go to church today but I have very little energy due to my lack of haemoglobin so I will pace my self today. Hoping to go out for a wheel chair walk later if the sun returns.

20,000 views to my blog - wow! Thank you to so many of you who follow this blog and stay in touch. I am sorry it is such a long journey. I am longing for the cancer part of this journey to be over - or as over as cancer ever can be! I see the oncologist on Tuesday so hopefully there will be some news about funding.

Yesterday was wonderful, a full busy day which I managed despite my blood count being low. Coffee morning was good - lots of lovely chat and playing with a very scrumptious little fellow. Bible study was good and I managed a 10 minute catch up on sleep! Evening out - good food and great company.

Exhausted this morning - but happy especially with the beautiful frosty, sunny morning.

Today cross matching for blood transfusion which should happen on Tuesday and dialysis with Josh, Chloe, Ed and Paul in pairs. Not sure what will happen about needles today - ho hum!

Today is going to be a full day all being well. This morning a coffee morning with friends, ladies who lunch and bible study this afternoon and than out for a meal this evening with the bible study girls. I am hoping to fit in a snooze this afternoon so that I enjoy this evening! I am a lucky girl. Also Chloe, Ed and Josh are coming home this evening for the weekend. Wow! Also I am in need of blood so I expect to be worn out after all that. All being well I shall have another blood transfusion on Tuesday. I am so grateful to people who donate blood.

Yesterday - no needles just used my lines. Feeling frustrated as the holes are now closing over and will need to be re-established - ho hum! It usually takes 2 weeks to establish button holes and I started on 25th January. More patience required on my part I think!

Hope you all have wonderful weekend plans.

All went well with Papageno and he returned home yesterday afternoon. The vet told Paul to keep him calm mmmmmmmmm easier said than done. He spent the afternoon and evening racing around the house biting everything in sight! As well as his little boy op he also had 2 teeth taken out so maybe his mouth was hurting. Today he has returned to my lovely kitten and is now sleeping right next to me.

I had a wonderful time with my friend S yesterday. It was lovely to catch up and the years disappeared. How precious are childhood friends.

Who knows what today will bring with my dialysis. G is taking me so I will enjoy her company.

A busy weekend ahead with Josh, Chloe and Ed staying for the weekend - yippee!

Poor Papageno has just left for the vets for a little operation - maybe. He had to be starved since last night and this morning he was so hungry he climbed up some shelves to reach a food packet. We are not sure if he ate any but we have warned the vet so we shall see what they decide. I don't like to think of him sad and lonely at the vets and would really like to go and rescue him. A day is a long time in his little life.

Yesterday's needling went badly! I am beginning to think I may never have a working fistula. The nurse put the needle into the first buttonhole and thought she was in the vein pulled back on the needle - no blood. Ho hum! She flushed it out and withdrew a huge clot. This may mean the fistula is clotted or just that bit. This could mean new buttonholes, new fistula or everything may be fine with a rest. I am feeling frustrated that this is taking so long to get sorted other people have just gone straight to using their fistula with no problems. Not keen on having a new fistula made as that would involve surgery at Oxford.

On a happier note my friend S is coming today and I am really looking forward to seeing her. We were friends at school and have a lot of catching up to do.

I am listening to a CD which includes 'Faithful God' and I am reminded that he is faithful. He holds me in the palm of his hand. He KNOWS the plans he has for me and for my life.

Today - dialysis and maybe a new button hole. My nurse should be back today and she will decide. I will be so glad when the button holes are sorted and working well as it makes dialysis stressful.

Tomorrow I have a lovely friend coming who I haven't seen for ages. I am really looking forward to seeing her. It is great to have lovely things to look forward to.

New day and new week ahead. Lovely to see the sunshine and hear the birds.

Yesterday was a lovely day - tidied with Ben which was great as we chatted about lots of things. Then yummy roast with Josh, Paul, Ben and Eleanor - Josh had just completed his 22 mile run - wow! He ran to Reading and back twice.

Today coffee with a lovely friend and a bit more tidying and no dialysis - yippee!

What a week I have had - nothing has seemed to be straightforward. Yesterday we arrived at dialysis and the water infection had been sorted out. Great we thought, everything should be fine now - mmmmmmmmmmmm. Someone had a different plan! The bottom needle went in painfully but it looks like the vein is closing down - the pressure wasn't enough for the dialysis. So we used a line and a needle. All fine until the machine decided it didn't want to do dialysis! Everything stopped and the machine had to be relined and I lost about 100 - 200mls of blood that was trapped in the tubing - ho hum. Machine restarted and off we went again. Josh and I had a good time discussing what events we would like to go and see at the Olympics. Josh has made a very good chart so we just need to apply for the tickets when bookings open. I am very excited about going next year. I took ages to stop bleeding at the end of dialysis - i thought we might be there for ever!

Today I am tired so going to have a go slow day. Josh has just left for a 22 mile run - it makes me tired to just think about it. If you haven't sponsored him but would like to the details are here. He is running the marathon for cancer research on 11th April. Thank You

http://www.justgiving.com/joshwhite

josh's page

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JustGiving - the easiest way to fundraise and donate to charity online

I have survived 4 days without dialysis - good to know I can do it. Just woke with a headache today but not feeling too fluidy. I will be glad to get it over with. Unfortunately the needling will be tricky as the fistula hasn't been used for 4 days - ugh!

Nice day yesterday bible study and ladies who sometimes lunch! Josh arrived home at 9 ish and Eleanor (Ben's friend ) at 7. Good to have a full house.

Today dialysis with Josh - maybe looking at tickets for olympics next year.

I love the sunshine!

Please pray today

Yesterday I arrived slightly early to dialysis to be met by a waiting room full of people and empty beds. No-one was being put on dialysis and nobody knew why - including the nurses. All they could say was something was wrong but they didn't know what and we would know soon. It was very mysterious. Over 2 1/2 hours later the head of dialysis came to tell us that there was an infection detected in the water supply and they couldn't risk giving us dialysis in the downstairs wards. The Consultant had looked at our recent results and some patients were to have dialysis upstairs on a ward, some to go to Windsor for dialysis and some to go home and wait til Saturday. I was in the go home and wait til Saturday group. This means that I will not have dialysis for a total of 4 days. It is slightly scary as when I get overloaded with fluid it collects on my lungs and I find breathing difficult. So please pray that that doesn't happen and I manage to wait until Saturday for dialysis and also that nobody has got an infection as a result of the infected water supply. Especially as Paul is going to London today. I was very grateful to have Kit with me to keep me company and to speculate on what was happening!

Today bible study and lunch and Josh is coming home.

A grey, windy day today. But Kitty is coming and we are going for a little shopping before dialysis - yippee! I am looking forward to a day together and catching up.

Yesterday was good, coffee with friends and a bit of tidying. I found out yesterday that my job is to be advertised on a temporary contract. I had anticipated this would happen but still felt sad. I so wish I was back at work doing all things normal. Will life ever be normal again? I know God holds the plans he has for me and they aren't always my plans! I am learning slowly. So I give thanks for the plans he has.

I don't know if you are reading this S but you have been phoning but I can't phone back as I don't have your number. Maybe email? anne@thewhitefamilysite.org.uk Looking forward to being in touch. Thank you

Ok so life is never quite as I plan. My one thing to do yesterday was to make slow cooker meal - well no. I decided to be sick instead! I still am quite often sick in the mornings - not sure why. I think it is connected to my kidney disease. Makes cooking quite tricky! So Paul made slow cooker meal instead and I gave instructions. Then phoned physio to check she was in only to be told that she has gone on sick leave for at least 5 weeks - ho hum. We are now trying to find a physio who specialises in oncology patients.

On a more positive note needling went very well yesterday with almost no pain. Hurrah! So we are going to continue to use sharp needles this week and then try blunt ones again next week. I felt well after dialysis which is such a bonus and doesn't happen often. Lovely tea with pancakes - yummy.

Today coffee with 2 friends and PIC line flushing.

So today I want to be present in each moment. To treasure each moment given to me as a gift and be grateful for it. I have been struggling lately feeling slightly sorry for myself. I have had enough of being ill. I would like to wake in the morning and be better! I would like to go to to work, go shopping and come home and fix tea. Then tidy up a bit and do some gardening and go to bed tired and happy. Instead I can choose just one thing which will then take all my energy and that is all I can manage. It is frustrating! But today I will rejoice in that one thing and be happy. I will treasure the company of friends, the sunshine and live to today fully present in the moment.

See last blog for details of the consultant visit. Hopefully I have the rest of this month without chemo and then 3 months with chemo and then I am finished.

Today physio (if the physio is back) and dialysis with D. My one thing is to make tea in the slow cooker for later.

I hope you can all be present in your days enjoying all that you can do. Please don't take it forgranted that you can drive your children to school, go shopping for food, cook your tea, go to work, walk your dogs, do your ironing, tidy your house etc..... all is a gift and you never know when you may not be able to do it.

Consultant appointment went well. He had already contacted the PCT who had turned down the funding for the drug Abraxane and he has also appealed to the PCT which is the next step. It is expected that the PCT will also turn down the appeal. Once that is done he can than apply for some of the pot of money which is set aside for unlicensed drugs. There is still money left for this financial year so he is hoping that this will be all sorted by the end of the month. This would mean that I can start the chemo at the beginning of April and be finished in June. With maybe a month to recover before Josh's wedding. This would work out well. Please keep praying.

He has also started me on hormone treatment ( Arimadex) which I will take for the next 5 years. This is a preventative treatment and is routine for patients whose tumour is oestrogen positive. We just have to check whether it will get dialyzed out by the machine which will mean I will have to take it after dialysis - all very complicated. Nothing is simple for a dialysis patient!

What a lovely day - no dialysis and sunshine and hopefully a plan.

Yesterday was also lovely church and church lunch - surrounded by friends and chat - perfect.

Today - oncologist and we are hoping he has sorted the funding for the new drug. We shall see. I will update later.

Yesterdays dialysis was yuck. The needling was very yuck! We have gone back to sharp needles for both buttonholes and I have pegs in both holes. It is tricky! Please pray that this week it improves and the little channels become established. I also felt yuck during dialysis and then had a yucky evening.

But thankfully this morning I am feeling MUCH better. I am looking forward to today - no dialysis, church and church lunch. And Chloe here- all good.

Kit is running today - a half marathon for cancer research. Well done Kit!

Busy day yesterday but lovely. Coffee with a friend catching up. Then the ladies and tough bible study. And Chloe back with a cold and nasty cough. She has been a poorly girl lately - medical school is hard. We had the most yummy slow cooker meal. I love my slow cooker. I am feeling so much better each week that goes by - it is hard to face the fact that I need to have more chemo and become poorly again.

Today dialysis with Chloe. Just hoping the needling is better.

Today I am thankful for

• Blue skies and white puffy clouds
• The love of my family
• A little black kitten licking me
• Texts from friends
• Bright yellow daffodils in a golden vase
• A warm comfortable bed
• Kind nurses
• My kindle taking me to other worlds
• The word of God
• A washing machine that washes!

I wonder what you are grateful for today?

Yesterday needling was yuck. I am looking forward to the day when I can write that it had gone well. The bottom needle wouldn't go into the vein and took a lot of pushing. The top needle wouldn't go in at all and had to be changed to a sharp needle and a peg has been put in again to hold it open. It feels a bit like 1 step forward 2 steps back. Ho hum! Once the needles are in it all goes well and they are beginning to say that my time might be reduced slightly which would be wonderful. (only by 15 minutes but that is better than nothing)

Today coffee with a friend, ladies who lunch and bible study, then Chloe home.

Thank you to those of you who have sponsored Josh we really appreciate it. He is training so hard and it spurs him on. I am so proud of him for doing it as after the attack he thought this sort of thing would never be possible. He continues to be in pain but works through it. He is a star.

Please keep praying for Mondays meeting with the oncologist - I need to have a plan!!!!

http://www.justgiving.com/joshwhite

This is Josh's fund raising page for the marathon he is running in April. Thank you to those of you who have sponsored him. He is training really hard. If you feel able to please sponsor him. Thank you

Good morning - it already feels like it is lunch time! I have been to physio waited for 20 minutes and then found out physio wasn't there.Came home and tidied 2 drawers in Ben's room, put in some washing and tidied the lounge. Need a rest now! I have decided to try and sort 1 cupboard or 2 drawers per day as we are living in such a muddle. I am easily overwhelmed by it.

Yesterday didn't go to plan - I woke up feeling sick and it continued most of the day. Not sure what that was about. It wasn't the normal sickness. However feeling better today thankfully.

Today dialysis - not looking forward to needling.

Needling yesterday was yuck. Combination of different nurse, holes closing after 2 days of not being used and a clot in my vein. It was very painful and the nurse thought she would have to start a new buttonhole. All in all an unpleasant experience. Hopefully it will be better on Thursday. Sad news from the man who was having a transplant this week - it has been cancelled. So hard for him to come to terms with after months of preparation. There is still a slight chance it may still happen but .......

Today I have a friend for coffee and my Pic line flushed.

Almost exactly 16 years ago to the moment I was giving birth to my baby boy. He was my gift and I am so grateful for him. It feels like it was just a blink ago and yet another lifetime! Only 2 more years and my nest will be empty. I look forward to seeing what the future brings for him.

Yesterday was fine, washing machine arrived and it seems to wash without flooding the floor which is a bonus! I am slowly working through the huge pile of washing that we have.

Today - dialysis. I had a dream that a friend I hadn't seen for ages was doing the needling. She isn't a dialysis nurse and I kept telling them she wouldn't be able to do it, and she couldn't! Looking forward to needling being over - its not a pleasant thing. Hopefully it will improve this week.