Still at the hospice

Well I am still here. The drugs have been altered a couple of times and the pain is getting better, but my shoulder still has niggles, and I have slept well for most nights. However its not perfect and I am tired today because I didn't sleep again last night. For a few days my eyesight was getting worse but that does seem to be getting better again. They would like to make sure things are still better for a few days so I will probably be going home again early next week.

The hospice has been great, the staff are all really helpful and I have had 3 showers since coming in
 (the first since October) and I get a good breakfast and 3 course meals for lunch and dinner. The dogs have both enjoyed visiting and getting lots of attention from the staff, but Bertie wasn't sure about the fox last night and tried to walk through the big glass window to chase it away.

Chat with Scott Murray and Joe Sims

Last week a couple of celebrities visited someone else at the hospice https://www.bristolpost.co.uk/news/bristol-news/bristol-city-fan-battling-cancer-2450822 and we had a short chat with them on the way back from the coffee shop. I can get out of the bed and sit in a large chair which makes a change from the bed but I do tend to make a daily visit with visitors to the coffee shop as well for a tea and cake. On Monday they had a photographer taking photos for the hospice to use in their publicity. They took lots of photos of us relaxing in "The Sanctuary" and having tea and more cake, but I think Bertie was the star of those photos.

Tea and Cake after the photo shoot.

Holiday at St Peters Hospice

The pain has been getting worse over the last week or so and it doesn't want to go away even though i have been taking more drugs. So they have arranged for me to stay at St Peters Hospice for a few days. This is so that they can try to find the right type and quantity of drugs to stop the pain but without causing me to see things and be so forgetful.
I am really nervous about being here but i am sure it is the right thing and hoping that i will feel a bit more normal in a few days.
Everyone here is really friendly and they have already started making some changes but i am not sure what they will make of my talking, singing and eating at night!!

Hoping to be home again in  a few days feeling a bit more normal.

Rubish Week

Last weekend I was looking forward to going out for a Cream Tea at Patisserie Valerie which was a Christmas present but I was in too much pain to get in my wheelchair. So that had to come to me instead and we had a good cream tea in the house. On Sunday I did manage to get out for lunch and had a good day. On Monday Specsavers came to the house to do an eye test and I now have some new glasses on order which should help me to read better. My eyesight has been getting worse and with the wheelchair I cant go to the shops very easily but their home service was great.

After that the pain got worse and I wasn't sleeping well. We had several visits from St Peters Hospice nurses and doctors. On Tuesday the pain was about the worst I have had during this illness and I had to take several "top ups" but these make me feel rubbish.

I am also struggling to remember things and am finally realising that my memory is not what it should be. I am getting really frustrated at not remembering who has visited and finding it confusing with so many different people coming in to sort out my care and the pain.

We are getting more support again now and I am really happy with the people who are helping now. They are much more understanding and work at a speed that suits me, which is good.

The pain seems to be getting under control again but the drugs have side effects and I am having more hallucinations and they probably aren't helping with my memory.
This weekend though I was able to go out for my Cream Tea and I am hoping I wont have to cancel so many visitors next week.

Still wanting to fight but I don't know why sometimes. Had a brilliant day shopping in Swindon in the week and managed to get Sophie a bag and purse and I got a nice watch. It was a good day with Sally, Sophie, mum and Katie and we saw Sarah up there as well. Had a good lunch out as well and really enjoyed being away for a good trip but it left me very tired.

Have had a new carer in the mornings who has been great and doesn't rush me but we are still trying to sort it out long term since she can only make one visit a day. We have had night care for a few nights who have helped out when I wake up and just need someone to reassure me. This is a real help for Sally, John and Mum so they be can be more awake during the day and I feel happier knowing that someone is awake and listening out for me.

The pain in the back has got worse over the last couple of days. I was meant to go out yesterday for a cream tea but it had to come to me. They have changed the drugs again so that will probably make me feel a bit drowsy for a bit until I get used to the increased level but hopefully it will sort the pain out. I am still going to keep trying to do things though and I am intending to go to mums for lunch today. But this pain has woken me up in the night and its worse than its been for a long time so will just have to see what this week brings.

My sight has changed (probably due to the tumour) and I'm finding it harder to read and see things but I have an eye test tomorrow (they are coming here) so hopefully I can get some new glasses to help.

The fight will continue, but nothing really prepares you for this and I find it really hard not being able to get out of bed on my own especially when people are swimming, running and cycling. But I still really want them to carry on doing it especially since I encouraged them to start doing it. Hoping to get out and support at some events they are doing.