So it seems a lot has happened since my last post, where do I start? My mind is all over the place at the moment but it seems to help me to write it down...
20th August it was day 13 of the chemo treatment (seems to be an unlucky number at the moment!), day 7 of the radiotherapy and mum was getting weaker, she was sleeping most of the day, we were struggling to get her to eat and even when she was she would hold the food in her mouth for ages and wouldn't swallow it, she could barely help us to help her move onto the commode, the mini seizures were becoming more common, she wasn't talking to us much, she was becoming more incontinent and feeling nauseous more often. We took her to her appointment, and unfortunately one of the machines was down so they were running behind (although no one told us) and an hour after her scheduled time they called for her...15 minutes later they called me and Dad in...my heart skipped a beat!
Mum was ok, but they couldn't get her onto the bed to have the radiotherapy because she was so weak and tired, the doctor came and they recommended to increase her steroids, almost double what she was on, and then they said to bring her back the next day to try again.
We went back, and the same happened again...they recommended we take a short break and come back on the following Tuesday, and we were all hoping the steroids might have kicked in by then.
The next few days were a struggle, it became clearer each day that the steroids were not making a difference, which scared me. I have done so much research on this and I know enough to know that the steroids (especially when almost doubled from what she was on) should improve the side effects and help reduce the swelling, so why haven't they? It came to the morning she was supposed to go for her radiotherapy and I had a chat with Dad, I told him she shouldn't continue, he agreed, as much as we all want mum to improve, to get better, to have a little bit of hope, we knew this wasn't helping it was making her worse. We tried to talk to Mum but I don't think she was accepting it, I don't think she really takes in much of what we say about her tumor/condition, she wont talk to us about it and its breaking my heart as I don't want her to keep it all in, I know she's just trying to stay strong for all of us.
So we went to see the oncologist, and she asked my mum if she wanted to continue with the treatment, Mum said yes :( she asked us, we said no, and she said she wouldn't recommend that Mum continues and explained it all to Mum. But I could see that Mum wasn't really taking it in, she kept falling asleep, or maybe just resting her eyes, but she wasn't really there I guess.
The oncologist explained that the treatment was making her worse, and she was too weak to continue, I asked (I already knew the answer, but I guess I needed to hear out loud) is it the treatment or the tumor that is making my Mum worse....she said its the tumor. So both radiotherapy and chemo was stopped, and they basically (in not so many words) said there was nothing else they could do.
We brought Mum home, told everyone in the family, and sat there not knowing what to do, what to think or how to react. I know we were doing the best for Mum, she was just getting worse, but I don't want her to think we have just given up on her...
Its not easy having to keep telling yourself, reminding yourself that your Mum is dying, wondering have I done everything I can for her, she says she is not in any pain...but she is suffering, she doesn't have to say anything but I can see that she is, this is no way for someone to go, we don't know how long she has, so do we have to sit here and wait? That feels like a horrible way of saying it, but Mum is barely awake and even when she is she doesn't make much sense...but at the same time I'm not ready to let her go, she's my Mum, she's always supposed to be there for me, I have so much I need to talk to her about, but I cant. I feel so angry with the world, I seem to be snapping at people I am close to about the strangest and most stupid little things, I don't want to socialise with anyone but my family and I even find myself snapping at them.
My Mums GP came round today, so we updated her on everything, she had a chat with Mum to see if Mum would talk to her about it, Mum told her she was terrified :( The doctor told us that she was going to arrange for pain killers etc to be held in the house, she explained everything we have to do to help keep Mum as comfortable as possible, she said that these things are different for every person so there is no 'timeline', but I think we all know, its not long...I still have hope though, I have hope that Mum is going to prove us wrong and keep fighting this and that one day soon I can talk to her about all the stuff I need to talk to her about. I need that hope to keep me strong.
Tonight I just laid next to her and watched her favourite TV shows with her (she wasn't watching but she knew I was there), I tried to reassure her and said your not on your own, I'm here, we're going to get through this together.
We still have time, I don't know how much, but we still have time...
