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.
Thursday 27 November 2014
Friday 21 November 2014
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.
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.
Saturday 15 November 2014
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.
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.
Thursday 13 November 2014
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!
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.
I will return with more news later.
Tuesday 11 November 2014
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.
Monday 10 November 2014
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!
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!
Saturday 8 November 2014
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.
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.
Sunday 2 November 2014
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