Had a tough day yesterday. Every time I go to visit mum I look forward to seeing her, and this time was no different. She's had a few weeks off treatment and I was hoping that she might get some respite and be feeling a bit brighter.
I was gutted when I arrived because she looked totally exhausted and within 5 minutes of us arriving, took herself off to bed. She had made lunch, but was too tired to stay up and didn't want to eat.
Colin filled us in on what's been happening. She's been having more seizures, so he's worried out leaving her alone, which in turn drives her nuts because she feels mollycoddled. He let her go to the shower while they were away recently and she had a fit and cut her head and bruised her face.
It's so hard seeing her so poorly and him trying so hard, but feeling like he can't do right for doing wrong.
Essentially mum still has sickness and tiredness, and no appetite so in a bit of a vicious circle. She did get up again while we were there and we had a bit more of a chat, but she couldn't even really get up to say goodbye. It's all so heartbreaking.
The other thing which hit really hard was that Colin said the consultant has said the treatment will afford about 2.5yrs of life because the cancer will never go away, just be maintained. I hadn't realised that any prognosis had been given previously so this came as a bit of a shock.
I have this horrible feeling that she'll never be the same mum again, and just hope that her quality of life can improve.
Adam phoned when we got home and we had a long chat about it. We both feel like we've just got to weather this part of the storm and do the best we can to support but its so hard because this disease just makes you feel so helpless.
She's started CBT, but Colin's account doesn't sound very positive on that. I really hope she sticks with it because I think it will help, but one of the things to come out of it is that mum doesn't talk to any of us enough because she doesn't want to be a burden. What she probably doesn't realise is that it's harder when she holds it on, because we don't really know how she's feeling or what's going on, and she's trying to deal with it all on her own. I hope that her CBT person can encourage her to share more, though apparently she's not doing her homework!
I couldn't sleep at all last night, woke up at around 2.30am and never really got back to sleep. Tried reading and all sorts, but no good so today will be a bit of a struggle, but I'll plough on. We're going to Glastonbury this week which I'm really looking forward to. First holiday since Christmas, but there is a bit of me which feels a bit guilty because while mum is having a really tough time, our lives just keep going on. Colin has assured me that its OK and nothing is likely to happen while we're away. Mum's next scan is first week of July, so that's the next big hurdle to face.
I just hope that mum's health settles down a bit so that she can have some fun again, because I hate seeing her so poorly.
