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.