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.
Wednesday, 28 November 2018
Saturday, 24 November 2018
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
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
Saturday, 17 November 2018
The good, the bad and the ugly
The good:
The car is fantastic, it gives mums her sense of freedom back that was taken when she became paralysed. It allows us to go on daily trips out wherever and whenever we want. For that, she is grateful.
The bad:
Mum is putting on a brave face every day, she aims to get out daily but some days it is hard as she gets pains in her arms has started to get headaches.
The ugly:
Mum is fighting it with everything she has got, but it is giving her a good fight back. It is a cruel cancer that has taken so much away that it makes every day a challenge. Being paralysed from the neck down takes away dignity and freedom.
"I am so lucky, I could not do this without the support of my family. My mum now is up daily, taking care of the house and the girls and John are now doing personal support when needed which is a cruel tablet to take- but they are actually very good at it. I also enjoy my weekly art classes with my Dad and of course Jacks quick daily visits"
We went to Blaise castle today (Mum, Dad, Sophie, Jack and Sally) which has been the best trip yet- mum stayed in the chair over 2 hours, didn't feel too sick, enjoyed being out and didn't feel too self conscious of being in a wheelchair.
The car is fantastic, it gives mums her sense of freedom back that was taken when she became paralysed. It allows us to go on daily trips out wherever and whenever we want. For that, she is grateful.
The bad:
Mum is putting on a brave face every day, she aims to get out daily but some days it is hard as she gets pains in her arms has started to get headaches.
The ugly:
Mum is fighting it with everything she has got, but it is giving her a good fight back. It is a cruel cancer that has taken so much away that it makes every day a challenge. Being paralysed from the neck down takes away dignity and freedom.
"I am so lucky, I could not do this without the support of my family. My mum now is up daily, taking care of the house and the girls and John are now doing personal support when needed which is a cruel tablet to take- but they are actually very good at it. I also enjoy my weekly art classes with my Dad and of course Jacks quick daily visits"
We went to Blaise castle today (Mum, Dad, Sophie, Jack and Sally) which has been the best trip yet- mum stayed in the chair over 2 hours, didn't feel too sick, enjoyed being out and didn't feel too self conscious of being in a wheelchair.
Friday, 9 November 2018
Forever changing
Last week mum was in horrendous pain as new pains arrived and it was not under control. This resulted in too many painkillers that made mum go do dally. This week, mums pain is under control and she is a bit more with it compared to last week. However, she is aware things can change quickly, so is making the most of this feeling. Fingers crossed it stays like this. Mum feels more determined to do stuff this week, since coming out of hospital which is simply fantastic.
We have had an exciting new arrival today- Mums very own wheelchair car!!
All I know is it white and we can get mums wheelchair in it. We had a nightmare last week with taxis that did not turn up!! Only short journeys for now as we need to sort out mums travel sickness. Girls day out tomorrow, which we are all looking forward to.
Here is a photo of a family roast last Sunday to celebrate my aunty Sarah's birthday.
We have had an exciting new arrival today- Mums very own wheelchair car!!
All I know is it white and we can get mums wheelchair in it. We had a nightmare last week with taxis that did not turn up!! Only short journeys for now as we need to sort out mums travel sickness. Girls day out tomorrow, which we are all looking forward to.
Here is a photo of a family roast last Sunday to celebrate my aunty Sarah's birthday.
Saturday, 3 November 2018
Sorry for not blogging...
Sorry for not blogging, but this week has been hard. Plenty of pain which is really unpleasant. We've had doctors nurses and carers in, all are very nice but it is hard to get used to having so many people around. Also we've had to call the doctor out when things become unbearable which makes life very unpredictable for my family and me. The highlight of my day is when I get out in my wheelchair, but sometimes that can be ruined by the pain. Going out to the garden centre was harder than we anticipated, and left me feeling exhausted and in more pain. This journey is far harder than I ever thought and this weekend is family time and I am really looking forward to going for a Sunday lunch at my mums tomorrow. The dogs give me daily hugs which brightens up the day. Although I can write with pen and paper, my arms are too painful to hold and type on the laptop so Sally has typed. Photos to follow....
Subscribe to:
Posts (Atom)