visit from Bertie

 well another hour in the wheelchair  and a  visit from Bertie which my emotion and fantastic.life in hospital has  this time. but hopfully home next week.

I am paralised from the bust down

I am coming to terms with not feeling anything below. the hospital is great, the staff are brilliant, I have a hospital routine, I am under palative care which work hard every day to make sure I am not in pain and stay positive and comfortable. 

I am grieving the loss of my legs and have been having nightmares which keep me awake at night and then make me tired the next day, so mum, John and Sally are sleeping with me to help me cope, so no it is not all plain sailing , but I am positive and mentally strong.

Everyone is working very hard to get me home . The family are mentally snd physically exhausted
but once we get home things will be better.

I have  wheelchair  time every day to build up sitting outside the bed and I LOVE  IT.
But mainly I am bedbound, I HATE IT.


I never though this would be me being nursed, but  I am, so I am smiling and gratful for everyone around me.

The next part of my journey

The cancer has not gone away. Having the cancer move to the spine (which is unusual) was bad enough, but it isn't behaving and it has decided to go one step further and press on the nerves in my spine. Not only can I not walk but I can’t feel anything from my boobs down. Last Wednesday I came back into hospital, had more scans which confirmed what the consultant expected and they won’t do any more radio or chemotherapy, which I don’t like but understand.

So now we are making plans to get me home. Tomorrow they will test getting me into a wheelchair which will allow me to get around at home and get out but we realised talking to the care team how many steps we have in the house. They are currently sorting out all the care for when I get home, as well as sorting out the drugs so that I am comfortable which will take a few days, but I am hoping to be home at the end of the week.

I still get tired and need to feel in control of as much as possible so will contact people to visit me to fit around all the helpers. Adjusting to this is really hard as I look at my legs and I know they are there but I need to ask people where they are since they are not where I think they should be. It is hard thinking that only 3 months ago they were doing a 45-mile bike ride. Mentally I am strong but even the strongest people will struggle with this, so space is essential and being with my family.

 

Spa weekend

This weekend I went to Devon with Phil, Sarah, Jack, Sally, John, Sophie. for a spa  break.
I was brilliant, I had a pedicure  and leg massage, Sally, Jack, Sophie and Sarah, all had massages. We swan indoor and out, went various different saunas,  The hotel looked over the sea and eating breakfast watching the waves was delight.  The company was the best, just spending time with  people  you care about is the best, plenty of laugher and eating loads of food.

weekends like this give encouragement to keep fighting and smiling.

photo will  out on..

keeping Busy

I .  am keeping very busy.  Monday I had a lovely afternoon out With Jane and Merlyn at Eastwood Garden Centre, I  always have a good time when we go .
Tuesday saw  mum and I visit the McMillian  centre  , the conclusion that Penny Brohn  might be option, I just need to talk to someone with a horrible cancer,, not brain Tumour and spine cancer is not really  hear off.
A very good walk Celia in the evening. Sophie and john trained with tri Club. It was good to see Jess and LIz…..

Today saw Julie and Lisa, such a laugh, then out for lunch with Mum and dad, followed shoes shopping with Sally.

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