Good and bad days

I had a great day yesterday. we managed to go to the garden centre and bought bulbs to plant for spring pots. We took the wheelchair which meant that I could stay longer than if I  was walking and we had a good look around. So now I just need to have enough energy to plant up the pots! We then came home and I washed all our duplo in the bath - we are sorting out the toys we want to keep for grandchildren and storing them under the new bed in Ben's room. It is a lovely positive thing to be doing - building for the future. Paul then left for London and I managed a little while on my own before Josh and Debs came to mummy sit! It was so lovely to spend time with them and hear about their lives and things they are doing. They then stayed and watched Strictly with Joy and I. Joy came to do the later evening shift! It was lovely to have company and to chat about who we liked etc... Joy and Matt left at 10.15 and I chatted with Chloe hearing about her traumatic day at work.So much is expected of our young Drs on little sleep and very little food (no time to eat). Unfortunately I had taken the sedative before talking to Chloe and by the time I had finished talking with her, Paul returned and the sedative effect  had  worn off. so I was then wide awake and didn't manage to get to sleep until 4am only to wake up at 7am. That is not enough sleep for a poorly person so today has been a real struggle. But I have been thinking this is a forward move because I would say over the last 2 weeks all days have been quite a struggle but at least I have now had a good day and can assume I will have more good days, and that's ok. It is so easy in this position to focus on the negative rather than in every situation looking for the good. 
So today I have been watching the Ryder Cup with my trusty guide (Ed) on the end of the phone to answer all my questions. I have made score sheets ready for next weeks Strictly, which, all being well, I will be watching with Kitty. I have written up our bible study notes and caught up on emails etc... Nothing that takes too much energy but hopefully meaning that tonight I will be able to sleep better. 
The GP was a complete star on Friday - I am sure that I have told you already how wonderful she is but she makes such a difference to my care. She  went through all our concerns and made plans for each one. She was unable to say what exactly is causing the anxiety but thinks it is probably a combination of steroids, morphine and withdrawal of both of these and general anxiety about the situation I am in. She was happy for me to take more sedative if necessary and will see me weekly to keep on top of it. We discussed my difficulty with eating and she has given me some drinks that can at least give me some more calories but are also friendly to my kidneys. It is unbelievably hard to eat when you aren't hungry and feel sick most of the time. I can't even discuss food or plan meals with Paul. We also discussed reducing the amount of morphine which will reduce all the side effects that it brings. 
So this week coffee with friends, visits to garden centres, visits to Hobbycraft for projects, blood tests, bible study, lots of strictly and it takes two, and hopefully at least part of the Away Day on Sunday with church. And hopefully more better days than bad ones.
I  do hope your days contain much to bring you joy this week.

Tough week

This has been a tough week. The anxiety and panic has continued all week and doesn't seem to be improving at all. Although it isn't in full on panic attacks it is now a constant hum of anxiety without any triggers. I have that pit of my tummy feeling that something bad is about to happen but I don't know what it is. As it doesn't have something to centre on it is very hard to counteract it with truth. I am just anxious. Distraction is the best answer to it because if I am fully engaged in something else then I am much less aware of it. The evenings are the worst when I am tired and it is much harder to be distracted. Thankfully Paul is my wonderful companion and chief distractor! The other really difficult part of the anxiety is that I don't like to be left on my own - this is very weird for me who enjoys my own company usually and is very hard for Paul. We are praying hard that it will go very soon. I am seeing the GP today and I am hoping she might have some encouraging words to say or a solution to at least help me to get though this bit. It is exhausting to have to stay on top of it all the time. 
On the plus side I have managed to reduce the morphine as the pain is much better ( radiotherapy having done it's job I think). I am also going for little walks around the block and beginning to do some very gentle exercise. This is a very positive thing and will help me to be able to get out and about a bit more. All this will help with th distractions. 
I am so enjoying seeing people for coffee and having them bring their lives into my home. This week I have heard about rambling clubs, Malta, holidays, choosing glasses, buying houses, schools choices etc..... If you have offered to visit and I haven't got back to you do remind me. I have been so delighted that so many people have offered and I am now booking people for the week after next. I can't tell you what a difference it makes to my day. I also enjoy reading your emails and messages and try to answer them when I can again if I haven't replied please let me know. Having you accompany me on this journey is really wonderful. 
I am, of course, looking forward to the return of Strictly tonight. As most of you know it is the highlight of my week. Tomorrow I will be watching it with Joy while Paul has some respite from me in a visit to Rigaletto at Royal Opera House. He so deserves some time out from the demands of caring for me. In the daytime we are hoping to go and buy bulbs in the garden centre to plant for the spring. The promise that spring always follows winter is one that has always been very precious to me. Then on Sunday we may manage church depending on how my anxiety levels are. 
For anyone who does see me I am back to not hugging again as the autumnal germs start flying around. There are some quite nasty bugs and I certainly can do without those to add to the general confusion! 
As ever I hope you have wonderful weekend plans that are full of joy. 

An evening reflection ....

We expect a bright to-morrow,
All will be well;
Faith can sing through days of sorrow,
All, all is well:
On our Father’s love relying,
Jesus every need supplying,
Then in living or in dying, 

All must be well.

A  lovely friend sent me this verse from a hymn recently. Its words sums up what I hope to be saying throughout this journey. Unfortunately there are times when my emotions get the better of me and they rule rather than the meaning of this verse. Last night was one of those times. Poor Paul took the full brunt of my sadness. It must be so hard to hear when you are also struggling to take in what is happening yourself. There were no words he could say that could comfort me or help I just needed to say them and he did the best thing he just hugged me throughout my outburst. I am telling you this not because you need to hear about me being sad but because I want this to be an honest account of my journey - warts and all (not that I have any warts you understand) It was a pity party on my part and was very selfish but understandable I guess. At the end of it all I didn't feel better but at least it had all been said! I then took my sedative and went straight to sleep! On waking in the night i could look back and see why it had happened and I think I know how to prevent it in the future. I had spent the day on my own in my bed - not having organised visitors in time, my boy had gone to uni on Saturday ( something I am very happy about but it was bound to be sad as well), I had been struggling  with sickness all day which is always difficult and I hadn't managed to keep much food down  and I had done too much thinking for one day! All that combined was not a good combination. So I will not let that happen again. As ever it is all in the planning! I am fine again today and I am already making plans for the next few weeks. i have also managed to cut my painkillers today which hopefully will mean that I am a bit less tired and can manage to do a bit more at home and if I am well enough, when I go out. Morphine is wonderful at controlling pain but it also makes me quite dopey! I am wondering of it is also contributing to the shakiness I have. 

So I have good plans for the next few days - friends for coffee and to accompany me to blood tests, bible study to prepare and go to, flowers to arrange if possible, and of course  strictly to watch at the weekend. I am also learning all about the Ryder Cup so that I can follow that at the weekend. My knowledge of golf is limited but Ed loves golf and is teaching me the basics. He tells me that the Ryder Cup is very exciting - 'epic' is his word for it from 2 years ago. I have printed off my list of things to look forward to and I will have that next to my bed. I am also preparing my go to list of verses. As you can see the plan is coming together! 

Thank you so much for all your loving support - I love getting your chatty emails or messages telling me  of your lives and the exciting things you are doing, or even the not so exciting things but are exciting to me when I am sitting here at home! 

Sorry about funny white boxes - no idea what has happened there. I need a secretary along with a maid!  

Weekend good byes

2.30 and I am awake pondering my weekend. Thankfully the panic continues to lift slowly. I have the pit of my stomach feeling (as if I am about to take a nasty exam) but the out of control bit has gone. This is good for Paul as it means I can be left on my own for short periods of time. The pain is nearly controlled without any extra morphine than the slow release and paracetamol which means that I am not too foggy. I can't stand for very long which means outings are tricky unless I use the wheelchair but at least we have it. I now need to do some basic exercises to get my muscles moving - 3 weeks of mostly lying in bed is very bad for muscles! 

Ben left on Saturday leaving our house looking like a crime scene. He had managed to spread his belongings he wasn't taking everywhere! We have heard he arrived safely and that he likes his bed apart from that I have no details ! Hopefully he might ring today and he will be bringing the car back soon. It is very quiet here - Paul has offered to stand in his room at regular intervals and play music, sing or generally chatter away to friends in a loud voice! 

Chloe and Ed decided that I would need cheering up so they came back on Saturday for tea and stayed the night before returning to London for a birthday lunch for their best man. It was so lovely to see them and helped with the quietness here. 

Josh and Debs came and helped Ben pack the car on Saturday before heading off to Wembley Stadium for a tour. I am looking forward to hearing about that on Tuesday when Josh comes to tea. 

On Sunday Mark and his girls came for a visit after going to Coral Reef for a swim. For those who may not know Ben has a pet snake called Bobo. Obviously he couldn't take him to uni and was going to leave him here which would have been fine but we wouldn't have been getting him out lots and his life would have been quite boring. So we were delighted when my niece asked if she could look after 
him while he was at uni. This was a wonderful solution. My niece is really excited having wanted a snake for a long while, we are delighted because he will be cared for and Bobo is very happy because he will have an exciting life. 

I am now starting to plan the next few weeks. If you have some time I would love to see you for coffee/tea. All my appointments come with the warning that I may have to cancel them if I become poorlier. I am not driving at the moment due to settling on the morphine so mostly I need people to come to me. I also have many needs for taking to the hospital for blood tests ( be aware that is a whole morning activity) and to the GPs - usually quicker but no guarantee. I will also need taking to hospital for scans and injections soon too. I am a busy bee! 

I am looking forward to sorting out all my craft projects and getting on with those this week. Kitty bought me a beautiful book full of projects that I would like to make so when we have the car back and Paul has some spare time I am sure we will be found in Hobbycraft buying all the bits and pieces.  If I get around to it today I will take some photos of the penguins I have been making recently both from felting and knitting. They are very cute. 

I hope your week is not too busy and also includes time to stop and watch the beauty of our world as it changes it's colours for Autumn. Don't take a day forgranted - appreciate all that you have been given. Who knows what the future holds? 

A shiny new plan,

Ok so here we go with the new plan! If you don't like detail you can miss it out but just know that I am happy with the plan!
My appointment was at 10.30 and we arrived a few minutes early. I know that this clinic is always busy but after waiting an hour and 10 minutes I asked a nurse if there was any idea how much longer we would be. She asked my name and then looked quite surprised by my reply! She disappeared for a few minutes and then returned with many, many apologies! Unfortunately when I had arrived the lady at the desk had forgotten to check me in so they thought I wasn't there! Thankfully they then took me in straightaway.
My consultant  discussed a number of possible options ( one of which did involve a biopsy of my liver) and together we have decided the following
--- continue with the new hormone exemestane as it takes time to work
--- add in denosumab ( a bone strengthening monoclonal antibody) this helps prevent the cancer eating into the bones and is given as a monthly injection 
--- have another scan in 8 weeks to see what is happening in my liver ( we will then make a new plan depending on the results of the scan) 
--- obviously if I find myself feeling more poorly before then I can return and we can rethink the plan
--- at a later date if things start to get worse then there are chemo options and there is another drug they can add to the hormone called everolimus but the consultant felt that both these options would make me feel very poorly and are not necessary at this point. 
--- thankfully we decided that a liver biopsy would not be needed
So the basic outcome is that I have 8 weeks until the scan with little that will be changing. The consultant was not at all concerned about the dip in my kidney function - thinking that we have changed quite a few things any of which could have caused the dip. I will have my blood checked again next week before I see the GP. 
Hopefully as the steroids leave my body I should start to feel less panicky and the withdrawal side effects should lessen soon too. 
 As you can imagine I am very relieved to have a shiny new plan and one that doesn't involve me being very poorly. It is lovely to think I can now plan some nice things ( with my wheelchair). 
All is well and all will be well. 

The ups and downs!

Thank you so much for all the messages, texts and emails I have had this week and of course the visits that have helped sustain me as I travel on this journey.
Thankfully the panic is lessening. I am having waves of panic rather than the constant barrage of panic. The sedatitive is helping at night and last night I slept from 10.30 ish until 3.30. Wow! That is 5 hours of sleep together! For the last 5 years that would be considered a good night! I  was then awake for an hour and half and then went back to sleep until 9! Yes you heard correctly - 9 am! That is a lot of sleep!

Unfortunately I have checked my blood results and my kidney function is slightly down. It is still in the ups and downs of my normal results but obviously we just want them to carry on being stable. Hopefully this is just caused by the steroids as well and as I am not taking them anymore they will return to their happy normal. This caused me to panic - but as Paul says I am allowed to panic about this anyone would!!!!! So this morning I am going to be on a go slow and allow the peace that passes all understanding to guard my heart and my mind from ALL fear. I am held in the creators hands - nothing is a surprise to him. Absolutely nothing. Paul is working on his laptop in my room and keeping me company. All this is so hard for him but he is doing a great job of being calm when I am panicking all around him!!!! Kitty is coming this evening to keep me company - such a long journey for just an evening but I am looking forward to hearing all about her weekend in Scotland. She is good at painting pictures in words so I will be able to see it through her eyes.

Yesterday my friend T came with me when I had my blood test - we had to wait over an hour but the time whizzed by as we chatted. She had caught up with a lot of people on Monday at a funeral and it was so lovely to hear about so many people we hadn't seen for years. A gathering of the clan!
Tomorrow we are off to see the consultant and to discuss the plan. I am thinking that he will have some ideas but that we will have to go away and think about what we will choose- unless he says that doing what we are doing is enough for now. I will be glad  when we have seen him because I will then know what the next few weeks will hold. As ever I love a good plan!
 I will post when I have seen the consultant and let you know if we have a plan and what it might be.

Ben is nearly packing!!! He leaves on Saturday lunchtime. Today we will make lists! Or rather I will make lists because that will make me happy and he will happily let me make lists!

Surrounded on all sides now ......

I can't thank you enough for all the offers of company and help that I have had this week. Wow! I feel completely surrounded by love which is amazing in the midst of the panic and fear. I am now covered for this week and can't make next week plans until I see the consultant on Friday and know what his plan is.  Once I have seen him and know what the next few weeks will bring I will be in touch and will make lovely plans to spend time with you. It has been such a joy to spend time with different people this week and to hear about their lives and their holidays and their familys. My family have railed around and are covering the evenings so that I always have people with me. 
I have just slept for 3 hours again which is wonderful - helped by the sedative and hopefully I will sleep a bit more soon. The panic is still there but it is not quite as pronounced as it was - hurrah! It is so silent at night while everyone else is asleep. Thank you for also covering me in prayer - many of you wake in the night and I know you are praying for me. It has been a hard time for praying myself - in the midst of illogical panic reaching for God is hard. But he promises to be with us even in the hardest places and I trust that he is. 
Thank you for also be brave enough to share your stories with me. So many of you have suffered the pain of fear and anxiety in the silence of your homes. How hard to do it on your own. I have the privilege of sharing this journey with you all and I am helped hugely by your experiences. 
Tomorrow I am off to the hospital for a blood test to make sure that my kidneys are continuing to battle on despite the barrage of drugs I am throwing at them. Each day that I am further away from the steroids will be a day closer to the fear and anxiety disappearing altogether. 
As ever thank you for being part of my journey. 

GP and a plan

Thank you everyone for all your emails and texts today. So many of you have had to cope with anxiety or panic attacks in some form or another. It has been a very difficult few days but I am so thankful for wonderful friends and family who have surrounded me. My GP has been very helpful and I now have a bit of a plan to help me get through the next few days. She thinks that it will take about  a week for the steroids to be out of my system   - in the meantime I need to have to find ways to cope with the panic and with the withdrawal symptoms from the steroids- ho hum! I have some sedatives which may help but come with 'take care' signs because of my kidneys.  A week doesn't sound long but when you are in the midst of an attack it feels like forever. The fear is completely illogical and doesn't centre around a particular thing so it is very hard to counteract it with strategies or words. I know that God is with me and I know that I am held in his hands but when the panic rises it just overwhelms and my head just spins with fear. I am praying that this will be over very soon and I will go back to my peaceful headspace.

Panic - oh dear!

It's 1.30 am and I am having quite a struggle. On Saturday I had quite a lot of pain so took extra morphine to help. At about 12.30 pm I started to have panic attacks - completely illogical fear which lasted all night. It is so scary to be in a place where logic can't reach. There are no words that seem to reach into the dark places that the panic takes me. I am hoping that writing about them tonight might help. I am sure that some of you face panic attacks in your every day life. As a Christian it is really hard to battle them because they come so suddenly and no amount of calm words seems to make any difference. Tomorrow I will contact the GP to get some help - how wonderful to know that there will be help. ( why do these things always happen on a weekend) In the meantime I am just trying to get through the night without waking Paul again - one sleepless night for him is enough. I need to make some lists I think - I am sure lists will help!!! I keep assuring myself that this will pass. Spring always follows winter. 

A busy day

Today has been a busy day - well busy for me! 
I started the day by doing flowers at the church. It was really lovely to be doing normal stuff. I am trying to do things which are normal when I can in what is a very unnormal life! It was lovely to chat with the other flower arrangers about what is going on in their lives and to plan the flowers for the next few weeks. 
Then home for coffee and cake and finishing up my bible study prep. for the afternoon. We are studying the Sermon on the mount together - words which are very familiar but hold hidden gems of truth that you have to look for. 
Then off to bible study at my friends house because her dog had had a little op. He is a beautiful,  fluffy dog and was wearing a bright blue plastic collar to stop him licking his operation site. He looked so so funny - bless him! I am sure he is very surprised to have this thing attached to his head! We had a good bible study and a catch up from the summer. So many things going on in everyone's lives. 
Then home for a sleep - I was exhausted after that! It doesn't take much to wear me out at the moment. I think I am probably feeling the worst effects of the radiotherapy now. Thankfully though sleep always helps. My back is also hurting quite a bit so hopefully that will also begin to reduce now too. 
Paul decided not to prom last night as I had been quite lonely the evening before so we spent the evening watching tv together. He made us a very yummy tea - steak with crunchy potatoes and runner beans from a friends allotment. Followed by banana and custard. It is so lovely to be enjoying food after so long. 
During the day I had a really lovely phone call from my GP. She had just heard my news and was ringing to see how I was and how my family are coping. So many people knock the NHS and complain about their GPs but I couldn't be luckier. She spoke to me for about 20 minutes making sure that I had everything that I needed and making sure I knew how to contact her or another GP at anytime. What wonderful support I have had from all the medical professionals who have been involved with my care. 
So tomorrow we are hoping to go to Savil for Autumn colour. Then church on Sunday. 

Awake again!!!!

Thursday 3 am - I am wide awake again. It's very quiet all around me except for the ticking of my clock. You would expect that this is the time when fear would creep up but I am peaceful at night. Thinking about the day to come and what it will include. Happy to know I am being held and that my father has the plan. 
The last few days have been good. Ben and I went shopping with my wheelchair and an adapted trolley. That was a strange experience to be pushed around Tesco and see it from a different level! How hard it would be to shop like that all the time - but for Ben and I it was an adventure. Since then Ben has been doing all his own cooking - it has been lovely to watch and makes me happy to know that he is so ready for uni. I have been trying to impart as much of my cooking knowledge as possible. He is so lovely to let me teach him and patiently listens to me. We have started the uni washing so everything is clean before he starts the term - who knows when it will be washed again! 
I have had coffee with lots of friends this week which has been such a joy. Hearing about their lives and dipping into their experiences is wonderful. 
The next 2 days include blood tests at the hospital, flowers at church ( so nice to planning something so normal) and ladies bible study. Then at the weekend Paul and I may go out together on Saturday and I am hoping to go to church on Sunday. I am so thankful for these weeks of not too much hospitals. I am hoping to do some bulb planting soon - nice to be planning for the spring. We had some very successful bowls of bulbs last year that flowered from early January right throughout the spring. We planted them and kept them in the shed bringing them in as each bowl finished. The colours of bulbs on grey days is wonderful. 
I hope you all have great weekend plans  - do take every opportunity to grab life. 

Nighttime posting again.....

So it appears that nighttime is the new time for me to post! It is 4.20 and I am awake. I sleep well for most of the night - returning to sleep when I wake easily until these early hours and then I am wide awake - due to the steroids! Thankfully my iPad  enables me to glimpse into the world even at night.  
I had a busy weekend of family - lovely to see them all and to watch them all supporting each other and me. On Saturday Chloe, Ed and I went to trilakes for some animal feeding which was lovely. We then met up with Ben for lunch in Côte in Wokingham - where for the first time in 6 months or so I a manged a whole meal out - a starter and a main course - wow! It was delicious. Once home - Joy, Matt, Talia, Adam and Kit arrived - followed by Josh and Debs   - a very full house! It was lovely to catch up with everyone and to listen to them all chatting away while I sat there slightly dazed with my painkillers! The cousins all left for a meal at Josh and Debs and then clubbing while Joy and Kitty kept me company. We covered the whole range of emotions in one evening - saying everything that needed to be said! We laughed and cried - I am so proud of how they are dealing with all this with me - head on. They too are well supported by their partners and friends who have all surrounded them. 
Yesterday my brother came with one of my nieces - it was so lovely to chat with them. They have lots of changes going on in their lives. 
After watching the start of the Tour of Britain Chloe and Ed headed back to Kingston and Ben, Paul and I were left to our peace and quiet. It is strange to be home now when everything is the same and yet so very different. I am planning the week ahead - lots of coffee with friends and plenty of rest times. Some time with my boy who just has 2 weeks left before uni. We are starting lists of things I would like to do with or without my wheel chair and just going to do them rather than waiting for a better time! My head is still rather full of 'stuff' and I am looking forward to a time when I have thought every thought I can think and I reach a more peaceful place. Thankfully I know that is how I work - covering all eventualities and possibilities and then coming to a place of rest. I am looking forward to that place. 
I hope you all have reasonably peaceful weeks - full of much that brings you joy.  I look forward to hearing from you - I love getting emails or messages telling me about your lives. 

3 am and home.

So here I am at 3.30 am snuggled in my own nest and so, so happy to be home again. In so many ways it is just the same and yet everything is different. All my things are familiar and safe but I know that everything has changed. 
My radiotherapy yesterday went well - lovely to have finished the first step of the treatment. It will now continue working for a week or 2 and then I should see the full effects. In the meantime I have plenty of painkillers and the aim is to have no pain so you take tablets ( and more tablets etc) to keep the pain at bay. I now have a lovely tablet cupboard rather than my tablet box! Today Ben and I are going to make a spread sheet to detail all my drugs and then I should be able to keep on top of it all.  Well that's the plan! It was so good to have had the time in hospital to get used to all this with the nurses help so that now it doesn't seem so complicated. The aim is to be pain free but withit - not pain free and asleep all the time! 
Today we are planning a little visit out - and maybe lunch if I can mange so much excitement - with Chloe, Ed and my wheelchair. Then Joy, Adam and Talia are coming for a visit and Kitty is coming to stay while Paul goes up to London to his first Prom for a little while. The cousins are all meeting up this evening for a meal together which will be lovely for them. It is wonderful to see my family all supporting each other as well as me. 
We are taking each day as it comes and not planning too far into the future for now. I have so much to be thankful for and so much to delight in right now. 

Today's plan

We have just met with one of the oncology registrars and he has an interim plan while we wait for my consultant to come back from holiday.  I will summarise the plan - do text me with any questions ( which I may not be able to answer!!!)

• Last radiotherapy tomorrow ( effects continue for a week or 2)
• Blood test tomorrow and weekly on 11 th and 18th September 
• Home tomorrow evening with new drugs sorted
• Appointment with Dr Brown hopefully  ( consultant on 19th September) 
• Start new hormone drug on Saturday ( known to be safeish for kidneys ) 
• Discuss using a monoclonal antibody to strengthen bones when Dr Brown returns from holiday 
• Discuss chemo when he returns - no rush to do this as first step is to change hormones and see if they work 
• If to have chemo then a line will be fitted but not needed yet 
• Come off steroids in a few weeks and see if my leg is improved otherwise return to using low dose steroids. 

Good news is that I just have 1 liver met that measures 1.2 cm which may be controlled by the hormones alone and not need chemo for now. So a good plan for now and gives me 2 weeks to recover from this bit before we make too many changes. Kidneys are safe and sound and should remain so as we aren't doing anything which should effect them at the moment.

Excited to be going home tomorrow for my wedding anniversary and to sleep in my own nest again.

Middle of the night ramblings

So here I am again - middle of the night coming to terms with the new adventure. Yesterday we learned that I probably have liver secondaries as well as bone secondaries. My mind has been whirling as I try to take in this new piece of news. Thankfully God in his grace is here with me - reaching into those fearful places in the darkness and holding my hand - oh so tightly. It doesn't feel quite real that this is happening. But here we are. Wonderfully, I am surrounded by staff who care and are trying to make this easier for me. Who support and provide for me, nothing is too much trouble always speaking with kind words and ready smiles.

We don't yet have a plan but it is being formulated and will probably include chemo now. We are discussing having a line put in as my veins are useless and including all the changes we were going to make to tackle the bone secondaries. As ever the tricky part of the plan is to protect my kidneys. I am trying to be peaceful as they make the plans, taking each step as it comes. It is good to be in hospital as they can do all their planning with me here. I also have space to work through my thinking in the quietness of my lovely room.

I am loving having my family around me - listening to them laughing last night as Paul sat looking like a little gnome in my jama top, Ed 'borrowing' the comfy chair from the nurses station to sit on, and Josh and Debs listening to me telling Josh's birth story! Visits from friends, bringing their lives into my room helps and all your hundreds of texts and emails and messages. Thank you! I feel like I am held up by a cloud of loveliness! But most of all I am held by the creator who has numbered my days since before I was born - each one written in his book, planned perfectly for me and for you. Together we are on this journey and I am grateful for each and everyone of you. I will let you know the plan as soon as we know - in the meantime know that I am ok - don't worry about words - I know there are no words to be said and that is ok. I am held.