Merry Christmas everybody! It's Christmas eve and I've made it! Celia is writing this message as writing for me these days is very hard, but I am pleased that people want to read the blog so I'm determined to send a message. I'm looking forward to spending special time with my family who I just couldn't have managed without, they all help me cope. Time with them is invaluable. I have some incredible friends who have not left my side and I've recently spent time with each of them too.

Wishing you all a great Christmas. Be happy and enjoy every moment. Each day make sure you find something to smile about.

I'm working on new goals for the new year. My first one is to taste every type of chocolate and I'm looking forward to that!

I should make Christmas

 Well, Mr Herbert said there was a chance I could make Christmas, with six days to go I am still here! I must say it is not the most pleasant of cancers, last night was particularly un pleasant as the cancer was very, very painful in my back. You never know how the nights are going to be, last night was a real hum dinger! Having pain shooting through your left arm constantly all night was truly awful, luckily I had John and Sally here as we are trying to work out my sleep pattern as I'm also not sleeping at night. I was told by Sally that I was disorientated, which I really don't want to be. I don't want to be disoriented but am aware that the medication takes the pain away. I have a high pain threshold and I am aware that extra pain relief is needed but I really don't like taking it as it make me feel as if I'm in another world. This cancer makes you question how hard you want to fight to stay alive, as the pain is just not fair any more. I know this sounds ungrateful but I'm in no rush to leave this world. I'm tired.

Getting Closer to Christmas

Since the tumour in my spine was diagnosed I have said I wanted to make Christmas and although the consultant didn't sound convinced (he said it would be a good goal) I now feel sure that I will be here for Christmas. I am finding it really hard and understand how people loose their fight without really meaning to. The longer it goes on the harder it gets both mentally and physically. I am awake a lot in the night thinking about all sorts of things and it takes me a long time to wake up properly in the morning but even after breakfast I still feel rubbish and tired. As the day goes on I feel better and really enjoy going out for trips but then come back home and spend the rest of the day in bed and cant really do anything for myself, since I need someone to go and get things or make drinks etc. Then in the evening after dinner I feel tired again and drift in and out of sleep for the evening.
The drugs are keeping the pain under control most of the time but I don't feel great which is hardly surprising with the amount of drugs I'm taking.

But as for Christmas the tree is up and looks great, most of the decorations are up outside and I'm getting lots of help wrapping presents.

A busy week

A very busy week. Determined to make the most of life, we have pushed boundaries. So...where do I start? I have been to Bath Christmas Market with Mum & Sally and tasted very nice whisky and gin. Here is a photo of me and mum with Santa.

I have been Christmas shopping with Dad, Phil and Sarah for mums present which happens yearly. In between these outings I have days of rest as the pain is increasing and I get very tired.

I am not sleeping at night very well and get scared to fall asleep, and become upset. I am not sure what triggers the tears but I am learning to accept them. As I said before the pain is increasing, which means the painkillers are also increasing which have side effects.

Today I saw Celia in the morning and Jane and Marlyn in the afternoon which was great fun. I love catching up with work even though it seems a life time ago. But knowing I have worked makes me feel good.

I have also seen all the regulars who help me with daily tasks- you know who you are!

Tonight I will have a chilled evening, wrapping up a few Christmas presents and watching TV.

Brean Santa Run

Sophie, Phil, Richard, Jack, Elaine, Lucinda, Andrew, Karen and Sally took part in a 5/10K trail run. I went down to watch everyone cross the finish line. We were very lucky to get such a brilliant parking space and I was hoping for chips but the que was too long!! Sophie done very well and has now found a new love to running with Bertie. She has already signed up to her next event.

Today has not been so good, I have been in lots of pain fingers crossed we a solution sooner rather than later as I want to get out in my car and live!!!

Sometimes it feels like one step forward and two sets forward. But as long as there is steps forward all is good.

Getting more adventurous

Its been great having St Peters Hospice nurse visit each week, but things don't actually change and I still cant get out of bed. I hate that I cant feel from my chest down, and I hate seeing the effect on the family who are being more honest but at least the pain seems to be under control.

I am getting more adventurous in the wheelchair and going out for longer trips. In the last few days I've been to Aldi, The Mall and to my mums to meet up with my cousins after a walk around Little Stoke park and a quick stop for chips.

We are settling into a bit more of a routine but I get tired quite quickly particularly in the morning and evenings which I find really frustrating, but the nurse says that is to be expected as I spend longer out in the wheelchair.

St Peter Hospice

We are now embracing the St Peters Hospice. They sort out my pain control and they are going to give us all some counselling. The nurse is really nice and I feel ready to embrace the journey ahead. The journey we have ahead will not be easy but it will be done as a family every step of the way.

As for me, my favourite bit is going out in my wheelchair and car. I am getting braver each day and going more places. I want to go to more place. I get nervous before I go out as the wheelchair is big, I am worried about being looked at but the more you do the easier it gets. We had some great fun at supermarket as I can't reach for anything but I have really good go first and we have plenty of laughs at what I want to get. I am trying not to be down but aiming to be positive but it is very hard. I tend to sleep a lot in the evenings which I hate, but have been told that the brain tumour makes you sleepy and they say that its normal.

Determined to make Christmas. Sophie, Sally and I are loving spending money

Must add that when anybody walks into the house they will see pringles that will be offered to them because I eat them at breakfast, tablets, tea and throughout the day. plus enjoying chocolate they have tasted too.

Sophie has helped me to typed the blog today