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. 

A surprising day.....

Today has been a really happy day. My boy has got into Birmingham University to study Political Economy. We are all delighted and there have been plenty of tears. He had a couple of exams that hadn't quite gone as he would have liked and so he had persuaded himself, and us, that he hadn't got in. So we were planning for a day of finding out how to get into uni through clearing. So it was a great surprise that Ben arrived in the bedroom first thing this morning holding out his phone to show the message from UCAS welcoming him to Birmingham Uni. We are so thankful that after some very tricky years he is now moving onto the next part of his life and we are so very proud of him.I will miss his constant presence in my life and of course his singing every day brightening my life. But I am so excited for this new adventure. His lovely girlfriend Anna is at Birmingham studying medicine and so she is so delighted to have him near her. This day has been a long time in coming but we are so pleased it is here. Results days for us ( as I am sure for many families) has been a real mixture of sunshine and showers. It is lovely to finish on a high note. My best wishes for all of you who have also had results today. The waiting is so hard. 

Weekend and hospitals!

Thank you so so much for all the emails and messages that you have sent since my last post. I have felt really blessed. It was a very hard post to write as I want to write that I am getting better and that every day is a joy but I don't want to mislead you. Chronic illness is rubbish and for those of you who suffer or care for someone who does you will know the ups and downs that come with the diagnosis. However I don't want you to think that I am sitting at home sad all the time - that is not the case either. I just have good days and bad days and sometimes good mornings and bad afternoons! There is very little pattern although I can predict that after a busyish day I will have a bad day. I am thankful for sleep ( even if it is broken sleep ) which restores me eventually! 
My weekend was lovely. It was great to see Chloe and Ed's new flat in a lovely part of Kingston. Chloe is 7 minutes walk from the hospital which is perfect after late nights. They have a little garden which they are already enjoying using. It is smaller than their last flat ( the joy of London prices) but is light and airy and only has 1 bathroom to clean instead of the 3 in the last flat! Their wedding presents arrived yesterday so I think they will be needing more storage as they have filled their existing storage. 
The cycling was wonderful. We managed to miss the pouring rain, thunder and lightning unlike the poor people cycling. We saw some of the 30,000 amateur on thier way back into London and then the pro cyclists just leaving London. We were so lucky that there was a cross over at the end of Chloe and Ed's road so that we could see both. I have a few photos which I will post later of cyclists whizzing past. I love all the pagentry of the cycling - the motorbike outriders, the sponsors cars and then the head of the race car and then the cyclists passing so fast that you almost miss them followed by the streams of  team cars in bright colours with the ambulance and police cars at the back. Often there will be a lone rider mixed in with the cars seeking support of some kind. Knowing some of the cyclists and their teams really helps and I can now pick out cyclists from the peloton (sometimes) as they whizz past. On Sunday we saw Bradley Wiggins with the team sky boys. We returned to see the return of the pro riders later in the day having followed the race on television through the afternoon and were delighted to see 2 British boys in the breakaway who eventally came first and second. It was so wonderful to be able to do that on Sunday without very much walking at all and a nice little wall to sit on while we waited. It was the first time Paul had seen a cycling race live and I think he glimpsed a little of why I like it so much - although I don't think he will take up following cycling! The journey home was quite exhausting and I was very, very glad to be back in my bed by the evening. 
Yesterday I had my annual visit to the oncologist. Sadly my consultant has retired and I was unsure who I would see. After some confusing phone calls the previous day where they tried to cancel my appointment as I have a mammogram next week and they wanted me to wait until October for the results, I managed to persuade the nurse that I needed to be seen now. I had a good chat with Dr A and he decided that we did need to exclude the possibility that my back pain could be caused by bone secondaries so I am having a bone scan next Monday. I am sure this is a precaution but I don't want anything to be missed because we assumed it was part of the autoimmune disease. He took that very seriously and agreed. So next week is going to be a week of hospitals - I have a bone scan on Monday. ( injection at 9.45 and then the scan at 1 pm), Wednesday a mammogram and Friday a rheumatology appointment where hopefully we sort out my drugs. I will then have an oncology appointment when my bone scan results are back - in about 2 weeks time. Hopefully after all that we will have a better idea of the plan - and we all know how much I love a plan! 
Tomorrow is results day and hopefully after that Ben will have a plan too. I can't quite believe that after 27 years of having children at home it will just be Paul and I. Life is ever changing. 

Absence....

Thank you for all those who have contacted me wondering if Paul and I are ok. I am sorry for my absence. I have always wanted this to be a place where I honestly say what is happening and how I am feeling. Recently I have been really struggling. Paul has recovered from his operation very well. Today he returns to work. For me this has just highlighted the fact that I am not getting better. That may seem a rather strange comparison, as of course he was going to get better and I am delighted  that he has. People have been kindly asking how he is and we have been able to say that he is improving every day. Then people turn to asking me,as they have over the last 5 years and mostly in the past I have been able to say - I am improving, except for the last 9 months since I started the methotrexate and ended up in hospital. These 9 months have been so hard. It has been one thing after the other - mostly drug related with pain thrown in. Obviously there have been wonderful times - Chloe and Ed's' wedding being the highlight. But I can no longer say I am improving. I have reached the new, new normal and that includes slow decline. I have had to accept recently that there are many, many things that I can no longer do and that I may never be able to do again. I have always felt that being reliable was very important and I am not reliable. I have good and bad days and unfortunately I can't tell when they will be. This means that I can't take on any role where I need to be depended on to carry out that role. This is hard to accept. I have to rest daily and I can no longer do evenings. I have to take a cushion to places to support my back and carry a sick bag just in case! I cannot walk very far without pain and that restricts what we can do. This is hard to write as I feel like I am moaning and groaning. But I think this is the truth about chronic diseases and the life that people lead who have them. It is hard to watch other people getting on with their lives and not to feel sad. The main reason for all of this is the return of the autoimmune diseases and the side effects of the drugs I have taken to try and control them. Having come off one of the drugs the  pain is creeping back into my joints.
All of this said - I am sad but not despairing. I am aware that this sounds like I am looking for sympathy but that is not the case. I just want to be honest about this journey. As I have said often before it is so, so easy to feel poor me! As if there is some unfairness at work but that is not the case. This is my journey - this is the plan and my part is to trust that the creator of the world is here with me. Sometimes I am clinging on by my finger nails but he is still there holding my hand. There is still joy every day to be found all around me. That means taking my eyes off my own situation and looking for it. It is my choice!
So that is where I am - I am sorry that I can't say I am improving every day. I know that is what people want to hear.  They don't want to hear yet again about what is hurting today! I am learning - very slowly - to take each day as it comes. For a planner that is very hard! Maybe that is my new lesson.
This weekend - all being well we are going to see Chloe and Ed's new flat in Kingston. Chloe and Ed are coming to pick up some more of their things which are here and then will take me back to Kingston with them. The prudential Ride London is passing by the end of their road so we are hoping to wave at the cyclists on Sunday.
This week I have my annual checkup with oncology, it doesn't seem a year since I last had an appointment. My blood tests yesterday were all stable which is good. Despite all that this year has thrown at me my kidneys have toddled along very nicely.
Thank you for your continued support - even in this struggle.