Mum ended up staying in the Royal Berks for 6 nights from Tuesday 12th February to Monday 18th February, when she was then transferred to the Duchess of Kent Hospice to fully recover. Mum said her experience in the Royal Berks was a terrible one! The nurses were very abrupt with her, not very kind or sympathetic and were always in a hurry to do something else rather than help her. I often think that perhaps they hadn't read her notes properly and were not fully aware of her case, therefore treating her as just another ordinary surgery patient.
She would often have to wait up to 45 minutes for her call bell to be answered. Originally we thought it was a good thing that she had a side room on her own, but actually she just felt completely segregated from the Ward and neglected by the nurses. The worst thing was once in the middle of the night when the colostomy bag leaked and she had to wait again for over 30 minutes for a nurse to come and help her. She said there is nothing worse than being woken up in the middle of the night feeling wet and realising that you're covered in your own shit and then having to wait for what feels like forever. Mum said that when the nurse did finally enter the room she just stood by the door with her arms folded across her chest and told Mum that if she didn't have a go at cleaning it up herself then she would never learn! Mum was in floods of tears, in a lot of post-surgery pain, incredibly weak and feeling very poorly from the side-effects of the cancer. Was this nurse even aware of Mum's history? It makes me so angry that she was treated this way.
On another occasion when Mum was in a lot of pain, again she had to wait for what seemed like forever for a nurse to come to her, and when she did enter the room she told Mum that she had to go and do something else and would come back to her later. Mum eventually lost it at this point and told the nurse that she wasn't to dare set a foot outside her room until she had helped her and that she was sick and tired of nurses breaking their promises and not doing what they say they're going to do. It makes me feel proud to know that Mum still has a little bit of fight left in her. Well done Mum!
It was a relief when she finally got discharged on Monday 18th as we knew she would be much happier and better cared for at the Duchess of Kent Hospice. The original plan was for her to only stay there for a couple of days until she felt well enough to go home, but this hasn't happened yet and she has now been there for almost 2 weeks. They tested her blood again last week and the count was low so she had to have another blood transfusion, which in theory should give her a bit more energy and make her feel slightly better. This is becoming increasingly difficult as her veins have started to collapse and it is much harder to take and give blood when this is the case. The first attempt failed and her arm became increasingly sore and blotchy, so they gave up and tried again successfully 24 hours later. However, Mum says it hasn't made any difference to how she feels and she still feels dreadful.
Mum is noticeably a lot weaker following surgery and her liver is enormous these days. She is still in a lot of post-surgery pain and apparently the stoma doesn't appear to be healing properly. Therefore, we have no idea when she is likely to be discharged.
It was Mum's birthday on Friday and we were hoping we would be able to take her out for lunch for a few hours to celebrate, however she was just too weak to even contemplate going. She did have lots of visitors though which Dad said seemed to perk her up a bit. Oli took a half day from work and the three of us went armed with a bouquet of flowers and a big birthday balloon which Dylan was reluctant to give up. David, Hattie and Mae came up from Lewes, as well as Dave Watson and Uncle Paul and Auntie Katie. We all sat in the Day Room and the nurses brought us cake and squash for the children. They took Mum to the Staff Room and they all sang Happy Birthday to her which was lovely. I really don't think she felt like celebrating but it was nice to just be there with her even though she hardly had the energy to hold a conversation with anyone. I think she was just happy to sit in the corner and observe.
So, now it's another case of wait and see what the future holds. It's starting to look slightly doubtful that she will get home from the hospice at all, but who knows, only time will tell.
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