Farewell

This will be the final entry in Anne's blog.  In her first entry, Anne wrote "so the journey begins."  Over the past 4 years Anne gave us the privilege of sharing her journey.  Now her journey is at an end.

In her first blog entry, Anne quoted the prophet Isaiah:

 "those who hope in the LORD will renew their strength.
 They will soar on wings like eagles"

She is now soaring as the eagles, free from the disease which dominated so much of the past few years.

As a family, we were overwhelmed by the number of people who made the journey to attend the service of Thanksgiving at Barkham Church. It was clear to everyone that Anne had touched so many lives, often (or perhaps usually) in a way which went unnoticed to everyone else.

Now we must adjust to life without Anne. What better way to do that than with the words of the poem which Anne sent to her siblings on the first anniversary of the death of their mother:


You can shed tears that she is gone
or you can smile because she has lived.

You can close your eyes and pray that she’ll come back
or you can open your eyes and see all she’s left.

Your heart can be empty because you can’t see her
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday.

You can remember her and only that she’s gone
or you can cherish her memory and let it live on.

You can cry and close your mind,
be empty and turn your back
or you can do what she’d want:
smile, open your eyes, love and go on.


Paul, Josh, Chloe & Ben.

Thanksgiving service

We would like to give you more details about the thanksgiving service on Friday. It is at 11am, at Barkham st James's church (RG40 4PL post code for satnavs). We will be having coffee and cake following the service in the village hall opposite. As it is a thanksgiving service not a funeral, there is no dress code - (Chloe: I will be wearing purple!). If you are able, please try and share cars to help with the parking. If you would like to make a donation in memory of Anne-please give to kidney research UK http://www.kidneyresearchuk.org/donate .  

Sad news

We are sorry to have to let you know that despite treatment over the weekend, Anne continued to be very weak and passed away on Monday morning. She had suffered bravely for many years, but is now at home with The Lord in a place with no more suffering or tears.


As a family we would like to thank everyone who has supported Anne and us throughout her journey.

We are planning a service of thanksgiving at Barkham church on Friday the 19th at 11am, to which you are all welcome.

Paul, Josh, Chloe and Ben

Hospital again

Just quick post to let you know I am back in hospital. My hb is low so I need a transfusion and my calcium is too high. Please pray. 

December begins.

My week hasn't quite gone as planned. Paul arrived back from London at 1am on Friday night to find me being very very sick. Not at all what you need at 1 am! I then slept until 5am when it started again and continued all day. I felt very poorly, considering contacting the hospital. Just the thought of 4 hours in A&E followed by a night on AMU really put me off. By Sunday I was feeling a little better - although completely exhausted by no food. I couldn't manage the stairs which meant no bath so Paul and I tackled the joys of a bed bath instead. We managed without soaking me or the bed which was a great achievement. I have been very tired but slowly improving since Saturday and thankful I have managed to stay at home. Being sick is awful because I am struggling so hard to eat and then I am sick and all that effort seems such a waste! 
I can't believe it is already the beginning of December - I have started my internet shopping and my Christmas cards will be here soon. Christmas plans have been made with short visits for me. 
On Sunday I had the delight of sharing the morning service from church via my iPad. It was so lovely to see everyone and listen to Julian speak - while watching him. Thank you so much to those involved who were so kind to make that work. I miss you all very much. The joy of being part of a church family can't be measured. 
So the rest of the week involves coffee with friends, a blood test and an appointment with the consultant for results. Please pray for a good plan. 

A busy bee!

Wow! What a busy morning. Kitty arrived at 10.30'so we had time for a little chat before leaving for the hospital. I had an abdominal ultrasound looking specifically at my liver and a ct scan of my chest and abdomen. The results of the ultrasound are known straightaway. They showed that the one secondary we knew about is still there but about the same size. But she can also see 2 other suspicious areas - not helped that I have a naturally fatty liver from treatment I have had. ( sounds rather unkind to call my liver fatty!!!!!) apart from that we now wait until Friday 5 th December for the rest of the results and for any change in the treatment plan. My blood results were very good and show stable calcium, stable kidneys and normal other results which is great news for continuing denosumab. I am very pleased about that. It has also been great not to have been sick all week. 
Thank you for all your thoughts and prayers today. Your messages have certainly helped us get through the day. 

Denosumab here we come.....

This week has been a week of recovery. The bug seems to have completely gone ( well no high temperatures or flu like symptoms anymore) I have had a slow week mainly having coffee with friends and making. But at least I have achieved something and feel that the week has had purpose. As ever catching up with friends is a joy and leaves me plenty to weigh up in my heart after they have gone. It also gives me new areas to pray for and to be more specific in my prayer life, something I have been learning more recently. God is concerned about everything about our lives even the little things but we need to talk to him. He likes us to bring our requests to him but to be specific  when we can. I am so grateful to all of you who pray for me. 
My blood tests from yesterday ( thank you L for your help) seem stable so I think the denosumab will go ahead today. As you can imagine I do it with some trepidation as last time I ended up in hospital after 10 days. I was also very, very sick on the evening of the denosumab. So now we try again. I am taking regular calcium tablets (9 huge chalky tablets a day) and vitamin d tablets which help the absorption of calcium. I have 3 different anti-sickness tablets which I can use. So the only way we can know if I can do this ..... Is to do it! 
Kitty is coming to take me to the hospital which is lovely and will definitely help keep my mind off what I am doing. I haven't seen her for a few weeks although I do speak to her every day. I am also looking forward to talking to my girlie later as she came back late last night from 4 days in Rome. We have had no contact - my choice as I wanted her to go away and not think about me at all. We promised to phone only of there was an emergency. I am sure she will have loved it. 
The weekend remins unplanned as we don't know how I am going to feel. I hope you all have cosy weekend plans. 

Updated Friday with a trip to hospital

Well another adventure - mmmmm. I came back from Dr Brown and felt very poorly in the afternoon and I assumed it was tiredness but after a long sleep and plenty of tablets I realised that I needed to take my temperature. It was 38.6 and we repeated it over the evening and it remained high. After a debate with Chloe we decided there was no choice but to go to A&E. Again a very efficient system got  me into my own cubicle and blood taken within half-an-hour. We then had the very long wait with me feeling rotten lying on the very uncomfortable A&E beds. We saw a lovely young A&E dr who was very thorough. She decided that I probably had a similar bug to last time of an unknown nature. I was admitted to AMU again unfortunately I did try pleading to be let home but she felt that she wanted to know that I wasn't going to get worse overnight. So if you pray please pray that I stop getting these random bugs as they are such a nuisance. I have no choice but to go to hospital as I can then have Iv antibiotics which get straight into my system and I can't sick them up I had Iv antibiotics over night along with anti sickness as the antibiotics make me sick, a chest x-Ray, and an ECG qnd was eventually a seen by the medic on call at 4 am. He was a cardiologist. He agreed with the A&E dr and wanted me to be seen by the on call oncology team on Friday morning in case they had anything to add. So on Friday  I was seen by the medical consultant who had sent me home with low calcuim( he was very apologetic)  and the consultant oncologist I hadn't met before. He agreed with everyone else and said there was no reason to keep me in for even more antibiotics which they would have no idea if they were doing anything. I am always so complicated.
I came home after a night of very, very little sleep with Drs visits, new patients arriving and departing all the time through the night. I slept from 3 until 6 and then was  awake until 10 and slept again until 5 am. I don't think I have ever been so tired. Not even with tiny babies.
So I am here at home still exhausted today ready for my afternoon sleep again now. Today's trauma was that my phone  went back with Chloe in her handbag to Kingston so I had no phone until just now. Thankfully Ed is cycling today at The Look Out so was coming this way. I do feel very vulnerable without my phone - especially when Paul had to go and get some of my tablets which didn't appear to be in my box of tablets from the hospital. Thankfully the chemist keeps a record of all my drugs and was able to print off a repeat prescription.
So now we have to just wait for this bug to go.

My new plan for today!

I am sorry this is just going to be a short post just telling you the new plan as so many are asking me. I am feeling absolutely exhausted after waiting an hour and half to see the consultant. My chair wasn't very comfy and I hadn't taken a cushion for my back. 
My blood tests came back this morning and were not too bad at all. My calcium is back to normal - 2.37, my hb is 12.3 after being 7.6 and the only one that is a bit concerning is my kidney function at 16 from 26 because I have gone back onto my blood pressure tablets- I will discuss that with my GP tomorrow when we see her. 
The new plan is to have another go at denosumab next Friday with weekly blood tests and extra ones if I start to feel more unwell. The only way of knowing if I can tolerate it is to do it again - with lots of extra calcium and vitamin d. The difficult bit is to keep the calcium down when I am being so sick. 
I will have a CT scan and an ultrasound scan on 27th November and from that we will then decide the next plan. He suggested today that if I am unable to take denosumab then he would be keen to give me the drug which is used to accompany the Extemestane. Unfortunately that comes with many side effects which I would need to cope with, but would be better than the chemo choice. He is keen for me to remember that most of my seconadries are in the bones and that there are many, many different ways of treating those now. I love that he explains to us why he is making the choices and that we could ask questions at any time. 
We were pleasantly surprised that Paul managed to find a space to park so that he could come with me. He likes to hear the same information as I do and ask the questions that he has on his mind. We are a partnership after all. 
Papageno also had a visit to the vets for a routine injection. He is never very impressed but doesn't make a lot of fuss. Today the vet removed the top of the basket and gave him his injection in the box. He didn't even miaow. He is a star! 

A new plan?

Today I am off to see Dr Brown - I will update you on new plan later. My bloods are spiffing ( as Jeeves would say) my calcium is back in the normal range. The only questionable one is my kidney function which has dipped because I have gone back on the blood pressure tablets- maybe we need some more work on them? 
I will return with more news later. 

11.11 we will remember them

As we remember why not have a look at this YouTube video. It is very powerful and reminds us that one day there will be no more tears, no more mourning, no more pain, no more crying. 
 www.youtube.com/watch?v=StuOWU4b1to 
I am disappointed not to be able to go and see the poppies but so grateful to all of you who have posted your pictures so that I can get a sense of what it is like. So powerful to see that number of men giving their lives for our freedom now. Paul and I are aware that so many of those men were young men just like our 2 boys on the dawn of their adult lives with so many opportunities stolen from them by the awfulness of war 
Let us never forget and never forget to tell our children. 

Weekend activities

Monday morning dawns clear and bright and cold I think. That is my observation from my cosy warm bed looking out my lovely window.
Chloe arrived around 11 on Saturday and struggled to get into our road - the road works have very nearly cut us off completely! Sometimes you have to almost plead with the workman to let us  through. We had a lovely day together chatting and catching up and Chloe found all our Christmas making supplies - of which there are many! We are making what is called December daily books - you scrap a page for each day of December highlighting different parts of Christmas that you love - it can include photos and pictures and lovely Christmas paper and stamps. You then keep it as a memento of that year. I have done 2 pages so far. It takes lots of planning for each page.
Ed arrived on Saturday late afternoon after collecting a plane and a saw to help Josh on Sunday to take off the excess wood on his doors in his new house now the carpets have been laid.
On Sunday Chloe and I started our pages - lots of cutting out backing card and shaping it for the pocketed windows. In the afternoon Chloe and Ed went to visit Josh and Debs new house and help sort out the doors. I had a long sleep as I had spent most of the day being sick. I am still really struggling with the sickness it is such a battle and colours all my days. I can't smell food or look at it a some days without being sick - it is such a nuisance.
So this week - Chloe is here until Wednesday, we are hoping for a little visit out on Tuesday if I am having a hot sick day. My first visit out for a while. Blood test on Wednesday - lovely to have Chloe here to help then coffee with a friend on Thursday and a GP appointment and a visit to the consultant on Friday. Another week planned!

My week....

Another week has passed. It has been a busy hospitally week. Monday blood tests for cross matching my blood which was very low. Thankfully we didn't have to wait too long and they managed to get enough blood with just 2 sticks. It is getting harder and harder for them to find veins that will give up their blood without collapsing. Tuesday a quiet day recovering with coffee with A where we put the world to rights. Wednesday we were at the hospital at 9 am after an hour long journey to RBH. I had 3 units of blood which took a total of 7 hours Ina busy chemo ward. It was quite a shock to my system after spending so much time in my quiet house. My lovely friend G came and kept me company during the afternoon which was great as it distratcted me from all that was going on. I came into hospital a very pale insipid colour and left with a pink glow! I am so grateful to those 3 people who gave their blood for me - who bothered to put their lives on hold for somebody they would never meet. I was exhausted by the time I got home and very grateful for my peaceful quiet bedrrom and my cosy bed. 
Thursday - I woke still feeling exhausted from the previous days outing but could walk up and down the stairs without needing a lie down and without puffing! I had coffee with R and caught up on her recent news and some lovely visits she has done recently. She paints pictures with words very well and I could imagine clearly the places she has been. I can't tell you how much I appreciate visits where people share their lives with me and I then can think about those things afterwards. Sometimes looking up places or interesting facts etc.... 
On Friday I had my weekly visit to the GP so that she could catch up with all that had happened over the last week. As ever she was supportive and kind making sure that everyone knew all that had been going on in case I ever needed to be in touch with anyone when she wasn't there. She updated my drugs and we discussed the flu jab which she still feels I need to be weller before I can have it. So I continue to avoid all crowds and continue with my no kissing, no cuddling rule. 
This weekend Chloe and Ed are coming home. I am looking forward to doing some Christmas making with Chloe - we have special permission to play Christmas music in November and do Christmas making before December! We are both going to make December daily books where you make a page for each day in December focussing on different aspects of Christmas that you love. They will be a special reminder of this year where for a long time I couldn't even have Christmas mentioned because it made me too sad. 
As I look out of my window their are signs all around of Autumn taking hold of the gardens. The leaves are changing colour fast now and the sky is quite grey today. I love the changing seasons that we have here in England and am glad that we can rejoice ina beautiful world given to us to care for. A friend is in India at the moment and I am wondering what it is like there at this time of the year. How strange it would be to spend Christmas in the sunshine. 
I hope you all have lovely Weekend  plans. 

Anne and Lila

Consultation

Today I saw the consultant dr B. It was reassuring to see him and feel that we are going in the right direction. My kidneys are very happy - probably due to the fact that I am not taking some of my tablets. He was happy for me to keep monitoring them from home and go back onto the tablets  again if my BP goes up dramatically. He was unhappy that my HB was still so low and felt that now is the time to have a blood transfusion which will  happen on Wednesday. I will have my blood matched on Monday and everything will be ready for the transfusion which should just take a day. So thankfully no nights in hospital. My calcium is struggling to get above 2 which is not good news. I had assumed I would have to take more chalky tablets but he feels that I am taking as much as my body is able to absorb so thankfully I will just continue with the 9 of those. The plan is to check my blood in 2 weeks and if by then my calcium has returned to normal then I will have more denosumab if not we will wait a little longer. He agreed that scanning now is much too early to see change so I will cancel the appointment on Monday and remake it for the end of November when I will also have a CT scan.
So all in all I am happy with this plan. I am happy to be having time to recover and not to have any nights in hospital. I am looking forward to a bit more energy after the blood and hopefully get a little more done in my days.
My lovely brother came from Stroud today to help with transport etc... It was so helpful to have him able to drop us off and pick us up and then to spend the rest of the day with him and really catch up on all his news. His daughter - my niece spent the day shopping with Joy and then popped into see me too. I am very tired now and looking forward to a good sleep and a quiet day tomorrow with my baby boy coming home.
I am feeling that I am now approaching the corner again - and maybe soon I will be turning it at last. We shall see what the week brings.

Oh what a beautiful morning - oh what a beautiful day!

I am sitting writing this from my bedroom - looking out of the window on the day unfolding - grateful for God's many, many blessings.
After a packed day of sorting yesterday I came home about 4 pm.The hospital were very organised and managed to arrange for me to see both the dietician and the pharmacist before leaving. so that when Paul came to collect me I was ready and waiting. I think this is a first for us to be discharged so efficiently. It helps to know how to play the system now!
It was great to see the SHO- A who had been so very helpful when I had been on Adelaide a few weeks ago. He gave me a huge hug and went over everything that had been happening over the weekend and reassured me that all was in hand for me to go home if at all possible that day. It was lovely to hear he had passed his recent exams and will now be a wonderful registrar. Whoever gains him will be lucky to have him on their team and the patients will be privileged to have him care for them. What a difference good Drs can make.
While in hospital there were some of those amazing 'co-incidences' that you can't help but wonder whether they have been carefully organised by a God who is interested in the little details of our lives. I was met on AMU by the nurse who we had been introduced to last time and who goes to Josh and Debs church. It was so lovely to hear her say she would be praying for me through the night as she worked. She spent quite a long time chatting with me while I waited for tests etc... and I discovered that we have many friends in common. She and her family have had to cope with many, many sad times and it was so lovely to hear her testimony to God's faithfulness despite such hard times. Another reminder to keep on holding tight. 
On Saturday the Consultant medic on call 'just' happened to be my renal consultant from dialysis, Dr V. Again so reassuring to have someone sit beside you who knew what would be most concerning me  and reassure me that my kidneys would recover from this. As she spoke with me she held my hand - a little kindness but makes all the difference in the world. She altered lots of my drugs to protect my kidneys and made sure that I had plenty of fluid to wash them out.
Later on Saturday we met the oncology reg - again this weekend who 'happened' to be my consultants reg who sat and patiently went through all the questions that Chloe and I had accumulated over the past week!. 
The out come of all this is the following: 

• no-one thinks the denosumab (monoclonal antibody) has caused any damage to my kidneys
• my kidneys became worse due to the amount of genereal 'unwellness' from the bug, the excessive sickness caused by low hb, and very low calcium levels in my blood which were left untreated for too long
• the bug was just a complete co-incidence and whatever it was has now gone! 
• the sickness became excessive due to antibiotics, drugs i am already taking, low calcium, renal sickness and a possible reaction to the denosumab.
• this all means that I should now recover with extra calcium tablets ( 9 extra chalky delights a day), I should stop being quite so sick and hopefully begin to eat a bit better (at last) and my kidneys should begin to pick up again. The dietician has given me supplements to help and my aim now is to try and stop loosing weight! 2 stone over the last 6 - 8 weeks is rather a lot! 
• I  will have more blood tests at the hospital tomorrow and see the consultant on Friday. 
• all being well the  plan will then be to have another 2 weeks to recover and then repeat the denosumab with many, many blood tests to monitor progress of kidneys, calcium, blood etc.... 
• ct scan and ultrasound scan then a couple of weeks after that to see what is going on - if anything!
• this feels like a good plan to me and we shall just wait and see what unfolds. As ever i am trusting both in the Drs wisdom and knowledge but also the creator God who knew it all before it happened and knows it all now.

Hospital again.....

So my corner got just trickier! I saw the GP on Friday who repeated my blood tests and then we waited - hopeful that something would happen which it eventually did. I was admitted to hospital via A&E onto AMU again. My blood tests showed that my calcium was very low, that my haemoglobin was low and that there was still signs of possible infection and most concerning my kidney function was decreasing. All these things would have combined to make me feel very, very unwell. I was reluctant to come back in again but knew that if I want to turn this elusive corner I would need another spell in hospital. 
As ever they were very efficient in A&E and within minutes of arrival I had a side room and  bloods had been taken. Joy and Matt had brought us in and  Joy stayed  with me while Matt and Paul went off to find more pleasant surroundings to spend a couple of hours. I saw the medic on call and he went through everything again. It was decided to admit me onto AMU ( the acute medical ward) and to give me calcium and fluids and to monitor my kidneys closely. We arrived on the ward to be met by a a very, very chatty gentleman who proceed to regal us with all sorts of information - I was beginning to despair but thankfully he was then moved to another ward. AMU is busy and noisy but has lots of staff and is the place to be when things need to be happening. So my drip was up quickly and efficiently and throughout the night I had fluids, calcium, a chest x- Ray, an ECG..... Etc... Not much sleep but plenty of treatment. During the day I saw both the renal team ( including my consultant from dialysis) and the oncology team. All have slightly different views about what is going on but the over reaching view is that they won't let me home now until I am feeling better and we are on top of all the blood tests. Hopefully this maybe the beginning of next week. 

On Saturday evening we heard that they had found me a bed in the oncology ward which is where I am now. It is a little 4 bed ward with 3 lovely quiet ladies and a view of the multistory car park! I am happy to get better here. 
Again I slip my hand into the hand of the creator God aware he knows and knew everything. He is here even in the darkest if nights and the furthest places where I think my heart has reached! Fear lurks behind hidden coreners and I am aware that I need to look out for it but so far I seem to be avoiding it.  
Thank you as ever for your lovely emails, texts and messages they have helped to keep me going. 

A little more corner to go.......

As you can imagine with me - we turn a corner only to find unexpected things around that corner. I had my first lovely visit from the Sue Ryder nurse yesterday. She is part of the palliative care team and was so thorough yesterday spending an hour and half going through everything that had happened to me over the last 5 years. She is there to advise me about any difficulties and problem we might have and provides 7 days a week advice line cover ( not her personally), along with a team of other professionals to help support you through this stage of your life. As part of her referral she had been given my recent hospital discharge letters including my recent blood tests which she noticed had a very low haemoglobin level. This was the blood tests taken a week ago and must have been missed in their enthusiasm to find the bug that was making me ill. This probably means that I will need a blood transfusion - but of course it is Friday! Thankfully I am seeing my GP this morning so hopefully she will be able to decide what we should do about this. It will very likely involve another night in hospital - it would be wonderful if you could pray that they could find a quieter ward rather than AMU for that to happen.
So the corner is turned not quite round to the sunny side yet but getting there. I will feel much better with some blood - so maybe that could happen sooner rather than later.
Josh and Debs move into their new house today after a very hectic week of painting. They will be exhausted after the weekend and will need to go to work to recover!!!!

A corner turned ?

Thankfully I seem to have turned the 'corner' which I have been waiting to do for most of the week! These last few days have been such a struggle and have seemed endless at times. I think the combination of the bug, side effects of the treatment and the extreme tiredness from sleepless nights have made the struggle particularly hard. Maybe the hardest part is how it has effected me emotionally. I have felt very sad - feeling that this was possibly how it was going to be from now onwards. I was unable to pray and felt that God was very far from me. After a better nights sleep it is amazing how quickly the darkness lifts and I can see glimpses of the sunshine again. I am very thankful for family and friends standing closely alongside me throughout this journey and reminding me of the promises which never change despite my fickle emotional state! 
Chloe returned to Kingston on Monday for a week of nights which has been curtailed due to her contracting a stomach bug. Surprisingly the hospital don't like their Drs to work with bugs! 
Kit has come to keep me company today - working from here and supporting Paul if I need help in the nighttime, which lifts the burden from him.
Josh and Debs have collected the keys to their very own first house and have spent the week painting!  They have done a great job helped by lots of friends and hope to move in on Friday. I am looking forward to seeing it for the first time once they are settled and I can travel. 
My baby boy appears to have settled into uni very well and always sounds great when we chat. He has reading week next week so I am hopeful that we may get to see him if only for a short while. I miss his singing and music around the house. 
Next week is full of blood tests and hospital appointments to prepare for the second dose of denosumab. The oncologists are sure that the infection was a coincidence after the denosumab so we shall see! 

Hospital again.....

My apologies for my absence this week but I have been back in hospital. The sickness after the denosumab just seemed to get much worse and by Wednesday  my temperature was very high. So to cut a long story short I was admitted to the acute medical unit at RBH on Wednesday evening. I had a very large number of blood tests and began a high dose of broad spectrum antibiotics aimed at killing all known bugs - dead! After 3 days in hospital we are still no nearer knowing what the bug might be but hopefully we are killing it! I have been allowed home under the watchful eye of my baby Dr with the instructions to go straight back if I get worse, or get confused or my temperature goes very high again. If I still haven't turned a corner on Monday I will return to an ambulatory clinic where they will do more tests. I am delighted to be home - AMU is one of the busiest wards in the hospital and is constantly busy, day and night. I was also kept closely monitored which  seemed to involve waking me 10 minutes after I had just gone to sleep! So I have come home for a rest with yet more tablets to add to the ever growing list. I have also been referred to the community nurse who will be able to help with the sickness and lack of appetite. So although it was a difficult time I am very glad to (hopefully) be out of the woods for now.
We are hoping for a quiet family weekend and no visits to hospitals !

Better days....

So another Monday morning and a brand new week. I am so grateful for each new day. Last week began the change I think as I started to have more good days than bad. I now have bad periods of time rather than bad days. We are making progress. I am grateful to have a time of more settledness and not too much changing.
On Friday I saw my lovely GP who made a few more changes to my anti-sickness drugs in an attempt to get the sickness under control. It is so helpful to see her weekly so that I can bring all my concerns to her. Kit and I then headed over to the new  Bracknell Clinic for the bone strengthening drug denosumab.   The chemo department is lovely, spacious, light and well organised. I had my own little cubicle with space for Kit to sit with me. I was especially happy to see one of the nurses I knew from RBH chemo unit who was my nurse. She carefully went through all the details about the drug and made sure that I understood the side effects and organised appointments for follow-up and my next appointment for the drug in a months time. We were very impressed. The other added bonus is that parking is very easy.
The side effects that I think I have had have been really yucky sickness on Friday evening and muscle aches and pains, apart from that the drug seems to have been quite straightforward.
The weekend was quiet but good. I loved watching strictly with Paul and filling in our score sheets. I am not sure he enjoyed it as much as I did - although he is becoming more knowledgable as the weeks progress.
On Sunday I managed to get to church - it was really lovely to be with the church family. After about an hour I started to feel a bit wobbly and so we left before the service finished. I didn't want to be ill at church and then feel that I couldn't do it again. I am sorry if I worried some of you.
Today I have had lunch with Joy and coffee with a lovely friend this afternoon.
This week I am looking forward to having Chloe to stay. It will be lovely to spend time with her. I am hoping to carry on having better days so that we don't spend the whole time talking about illness and tablets and can do some making together.

Steadfast love .....

Today I am grateful for the steadfast love of The Lord which never ceases and for his mercies which are new every morning. Each new day begins with a clean white sheet of appear which I can decorate and write on as I like. If I chose to my page can be full of self pity and  doubts, it can be full of sadness and regret or it can be full of joy searched for in all the far flung corners of the page. Today I am choosing to fill my page with joy and thankfulness. I am thankful for my lovely sister driving miles just to take me to the hospital for my injection, for the skype conversation I had with my baby boy yesterday, for my lovely GP who gives me time, for my cosy bed, for waking to a sunny morning with an autumnal chill, for my husband making that first cup of coffee in the morning, for 5 days where there have been more good than bad, and for next week when my girlie is coming to stay for a few days. I wonder how you will fill your page today - it is your choice! 

The last few days have gone ok. They have certainly been better than the weekend. My sleeping has been a bit more consistent and I have managed to go back to sleep quite quickly most times. I have spent time with some lovely friends hearing all about their lives - so many different areas discussed and put right over cups of tea and coffee. 
This weekend is a quieter one - strictly with my husband and our new score sheets, hoping to plant the bulbs and maybe church on Sunday if I have enough energy. 

Today my heart is with a special friend who gets married . I wish her and her new husband a very happy and blessed life together. 

Blood test.

After my poorly weekend it was great to have a better day yesterday. We had an earlish start ( well for me) hoping to miss the rush for parking at Royal Berks but we didn't. Thankfully we managed eventually to find a space. The queue for blood tests wasn't too bad and we waited about 40 minutes. It was great to have someone to chat to while I waited and the time passed quickly. Thank you C for your kindness. Taking the wheelchair was also a very good idea and saved me having to walk too far and getting exhausted before I started. While I was at the hospital my lovely sister Joy had come and started cleaning my house which was great. It was lovely to arrive back to the smell of a clean bathroom. 
I am glad to say that I have just checked my blood tests and everything is looking stable, my kidneys are stable which is the best news and means there should be no reason for me to not have the denosumab on Friday. I am glad I have done that as it is reassuring to see it written down in figures rather than me going on my vague feelings. 
So today coffee with friends and hopefully a little walk to the park in the beautiful sunshine. I haven't been for a walk for a few days as my energy levels have been so low. Although it looks lovely my guess is that it is starting to get chillier so gloves and scarves may be needed. 
My panic has just about gone altogether and although I am still anxious some of the time it is much easier to control. So I think it was definitely the steroids which is very reassuring as I don't have to do that again or if I do in an emergency I know that it takes about 3 weeks for the panic to go. 

Not quite the weekend we had planned

It's been a bit of an up and down weekend. On Thursday I spent a lovely couple of hours out visiting Hobbycraft with L, A and S. I came back with plenty of new projects which I have started straightaway. On Friday I had another very helpful visit to the GP who sorted out my tablets and answered my questions. I am so grateful that she takes the time with me. We then had an excellent bible study looking at a hard passage but beautifully led by J. We covered so many areas. On Saturday Paul was off to London again and Kitty came to Annie sit! When Chloe heard that Kit was coming she decided that she and Ed would also come and stay the night before going to Henley . We watched Strictly which we all loved so much. Some excellent dancers already. Unfortunately I was already struggling with sickness yesterday - there are many reasons, lots of my tablets cause sickness and their combinations make it worse. Kit left to go home and Ed read me a story as I went to sleep. Who would have guessed that would be part of a son-in-law's duties! I went to sleep quickly which was wonderful but unfortunately woke at 12 and was very, very sick. Chloe kindly came and sat with me for a couple of hours. I woke quite a few times in the night after that and then was sick again at 6. I was so disappointed as I had really hoped to go to the church away day today and had been looking forward to it but we couldn't go with me feeling like that. Chloe and Ed were going on a bike ride with Ed's dad but Chloe stayed with me until 4 and Ed went and met his dad. It was so lovely to have her company and made the day much more bearable. We did some making - Chloe made a cross stitch picture for the front of the book she has made for me for the night times. She has called it - 'Morning  always comes ' and has included photos and places to write notes etc.. I love it. So today hasn't gone as I had planned but it has still been a nice day. I am grateful for small mercies. 

This week - i am having coffee with friends, my aunt and uncle are coming to visit, I am hoping to have a blood test at RBH, and on Friday I have a GP appointment and my first denosumab injection. We are praying that that has no side effects. I would love a more settled week if possible with many good days. 

Sometimes good sometimes bad....

Things went a bit down hill after Saturday mainly due to some bad nights. Being tired makes everything so much harder to deal with. I struggle with the anxiety when I am tired as I can't get on top of the thoughts and they tend to spiral. Having said that the panic is definitely lessoning  and I am not getting the out of control panic that I had. I can be left on my own in the house now for short periods of time and although I don't like it I can cope. I am putting in place quite a few strategies that you have all been suggesting that have helped you and it is definitely better. I am a controller and anxiety is the opposite of being in control! Being able to put in place measures to control is good. Some simple techniques have probably been the best - realising that the panic can't hurt me is really helpful ( I know it sounds obvious but when in the panic it feels so scary) , telling myself that the panic is not reality and reminding myself of what is helps, I have made cards of all the things that I am anxious about and putting the solutions on the other side ( this helps by reminding me that there are so many different strategies for any one anxiety), using familiar phrases - ' over soon,over soon,' and 'this too will pass' help, my looking forward to nice things list, poems that kind friends have sent and of course bible verses that remind me Jesus is there with me in the midst of all of this and that he has a plan and is in control. Sometimes I do need to let go and trust that all my days are in his hands the good and the bad and that I can still find joy in each one. I am so sorry that so many of you have to deal with anxiety and panic in your daily lives - I feel humbled that you have been prepared to share your stories and strategies with me. I wish that there was more openness about these sort of issues and that people didn't feel that they had to cope alone. I can't imagine how lonely that must feel. 
I have seen lovely friends this week and caught up on much news. Joy has been able to step in when people have been unwell which is great otherwise I spend too much time on my own thinking - never a good plan for me! I saw some friends from the school I used to work in yesterday and they were like a breath of fresh air - bringing all the school news and making me laugh SO much. Laughter is always a good medicine isn't it. 
As ever thank you for all your messages and emails. I love hearing about your lives. I am so hoping to get better enough to get out and about more but it is taking time. I have started an exercise programme and am walking daily which is helping. But if you are a prayerer then please pray for my sickness to lift or for tablets to control it, for my eating to improve, for more energy to get out and about, for the anxiety to continue to decrease and for good nights sleep. Sorry it is such a long list. 
 I look forward to hearing from you and catching up with your news. So many lovely things going on. 

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.

A new adventure

I am so sorry I have been absent again but unfortunately I am in hospital. I was admitted on Wednesday as an emergency after some problems with my leg becoming 'odd'. I got out of bed in the morning and struggled to use the upper part of my leg which made me very wibbly wobbly. To cut a long story very short I was admitted and had an MRI scan that afternoon. Sadly the results showed that I do have breast cancer secondaries in my bones of the whole of my back. So I am in hospital while they make a plan ( still loving my plans) and they are closely monitoring my kidneys as they begin different treatments and get my pain relief sorted ( who would know that taking painkillers could be so complicated). I am on a lovely oncology ward in a very posh single room being looked after very nicely. My family, friends and church family have been amazing as ever and I am surrounded by love. I start radiotherapy to my back on Monday to help control the pain and will start a combination of bone strengthening drugs and different hormone drugs to help slow down the disease. I have had a ct scan and there doesn't look to be cancer in my lungs or liver but I will have an ultrasound next week just to check. If there isn't then they will hold off from giving me chemo until I need it. If they find anything else then I will start chemo straightway.

It has obviously been a shock and took me a sleepless night to get my head around it all but I am now very peaceful knowing that this is part of the plan and I am held in the fathers tender loving hands. It is amazing to feel so secure despite being given such bad news. This is just the next part of the adventure. Obviously I wouldn't have chosen this plan but my faithful father has and he knows what he is doing ( thankfully someone does). He sees the very big picture in the light of eternity whilst I just see my little bit of it here.

The family are all surrounding me ( Chloe was able to come straight here on Wednesday after telling her consultant and has been here ever since, she goes back today knowing I am in safe hands. Ben and Anna were amazing on Wednesday coping with everything as Paul was in Germany. Josh and Debs have kept me company and been here daily.  I have had lots of visits from friends bringing their lives into my little room, telling me of holidays, tractors, building work and their children's busy lives. I am glad to have Paul back from Germany now and holding our family altogether. We transported my nest from my bedroom to here - Chloe's beautiful quilt, plenty of cushions, books, kindle, iPad etc.... Yesterday she and I sat 'doing making' chatting about this and that - we could have been anywhere!

Do pray for us - especially for my family who now have to cope with so much. Pray for a clear liver and for the Drs as they make the best plans. And pray that we will all know we are held by the creator of the world in the palm of his hand.

I am having visitors but do text or phone us first as although they have open visiting we try to be quiet( the nurses keep telling me I am having parties). And when you visit it is fine not to have any words - words are not needed as ever a hug will do, we have tears and laughter all mixed together and all of that is fine. All is well and all will be well.

A hug was all I needed.

Yesterday at church someone hugged me. Nothing strange in that you may say and there isn't - we often hug in church and I am a huggy person so I often hug people. But the most important thing about it was it came with  no words and it was just what I needed. It told me that this person cared about what was happening to me but that no words were needed. It told me that I was loved and because I know this person I knew it also meant they were praying. As we wait to know what is going on in my body there aren't many words that people can say but that hug said it all. So often when people are going through hard battles we want to console, we want to tell them it will be ok, we want to make the hurt go away, we even at times want to make it easier for ourselves but actually sometimes there are no words. I think this is one of those times. Over the weekend I have thought so many thoughts. This is my strategy I cover all my bases ... If this happened then I would do this... and if that happened I would do that etc.... and at the end of all my thinking I reach a  peaceful place of waiting which is where I am now. Just waiting to see what the future holds. I feel sorry that you all have to wait too - this isn't your journey and yet you are part of the waiting. But maybe for someone this process will help them to cope with their own journey in the future.
We were reminded on Sunday that - ' nothing can separate us from the love of God'. NOTHING! No disease, no fear, no pain, no doubt, no dark nights, no cancer can stop God loving me and having the best plan for my life. That is where I am held in the palm of his hand. 
This week Paul is off to Germany and Ben is home from Reading Festival. I will have an x-Ray of my back tomorrow and possibly an oncology appointment on Friday, a dentists appointment on Thursday to finish off my root canal work (ugh) and in between times I will be helping Ben to sort out stuff for uni. I am hoping to plan in some nice things too to make up for all that hospitally  stuff! 

The adventure continues........

So my week of hospitals is over and I probably have more questions now than before we started! Unfortunately the bone scan came back as abnormal but not normally abnormal for bone secondaries! So I now have to have a whole lot of further tests to see if we can work out what is happening. As ever nothing is straight forward with me as the complex nature of the diseases I have and the overlap between them makes it possible that they may need  to say at the end of the tests they don't know what is happening and then make a treatment plan on their best guesses! The tests will take about 4 weeks in total so we have some waiting to do. At any time one of the tests may make it clear and then we will decide what to do based on that. 
In rheumatology I saw my own consultant which was really great and I am not going to restart the azathioprine ( the drug which made me so sick) but will double the hydroxychloroquine instead. He was pleased to see that although I have some pain it is not too bad and that my skin is stable and so was happy to leave starting any new drugs until I need to. He did say he had a drug in mind if I needed to have a different one. I also saw the physio who specialises in rheumatoid patients which was really helpful and she told me of some exercises I can do to help my fingers. I was happy to have a plan. 
So some patient waiting to come and more time to learn to be content in all circumstances. My hand is held tightly and I trust the creator. Do pray for us and especially for my family as we wait. 

A week of hospitals .......

Good morning Monday! 
My week of hospital visits starts today with an injection at 9.45 - all being well! Then the scan at 1. In the in between time I am spending the time with my soon to be uni boy. He is so, so excited about the future and it is lovely to see. He has been sorting out his room and come across lots of old things that have been buried deep under his bed! It will be great to have his room sorted. He is off to Reading festival on Wednesday so is excited about that too. Then when he gets back it will be about 4 weeks until he will leave - I intend to make the most of those weeks with him. 
Then Wednesday I have a mammogram in the afternoon, and on Friday I now have an oncology appointment and a rheumatology appointment. So hopefully by the end of Friday we will have a plan and my week of hospitals will be done. The sickness continues to subside but my back remains a problem. On Saturday I was due to go to London with Paul, Chloe and Ed to see the Russian ballet dance Cinderella but unfortunately my back was too painful and I had to stay at home. It is very hard to be left behind. Thankfully there was plenty of sport and Ben kept me company. 
I am looking forward to coffee with friends this week doted amongst my hospital appointments and to hear about holidays. I am also seeing Chloe on Thursday along with Joy and Matt and we will be looking at wedding photos - lovely. Chloe is coming home before her very first set of nights. I have so much to be thankful for whatever this week brings. I know that my life is in his hands.