That’s my “in case of a set back” plan
That’s my “in case of a set back” plan
So, they are very sporadic blog entries. But I’m actually glad I’ve written them. I just read it from the beginning and it has an overall theme of being scared of seizures and hating the chemo and possibly it will just stay that way till the end of chemotherapy or maybe till the end of everything. I don’t know. But I can see some improvements too. I can see that the setbacks still occur but are shorter. I can see that the overall feeling of being down is shorter.
What’s happening now. Well…. We are 5 months down the line. When I read back about starting the first chemo…. omg time does go on!!! unbelievably but it does. Graham just had cycle 5! But although over half way through…. the road gets steeper and steeper. The oncology consultant did warn us about that. She said cycle 5 and 6 are the worst. She did say chemotherapy cumulate and it gets worse and worse. Overall Graham seem to be working in odd cycles – cycle 1, 3 and now 5 were the worst. Cycles 2 and 4 seemed ok. Well bearable at least. The seizures are still happening. Which is annoying as we have like 5 or 6 weeks breaks. Ok, break is nice. I wouldn’t want them happening any more often then that. But still, it kind of leads to relax and believing maybe we’re over the worst and then bum! it comes back with revenge. I do keep a diary of the seizures, but I can’t see anything in common for them 😦 apart from that all but first two happen on the first week of IV chemotherapy when Graham feels the worst. I wish I could say they all happen at sleep but two hasn’t. So annoying. I wasn’t completely alone this time. The seizure happened in the afternoon, my children witnessed it and my older one is now petrified, scared, can’t sleep or eat very well. My younger was scared but she sat next to me next to Graham and was trying to help by talking calmly to daddy – that was soooo sweet! My brother in law arrived shortly after and he was actually witnessing the second seizure which happened same evening. I was at work. It’s the first time someone else was there when it happened and my brother in law did call me to say “now I understand what you meant, they are horrible to watch”. This sentence meant to much! as I thought I was just some sort of freak that I had such a terrible time to go through it. They are awful to watch. I tried to record it but felt like an idiot to record someone at their lowest and most vulnerable. I only tried to record it as Graham asked me few times to do it. Unfortunately my hand was shaking so much that I miss pressed the record button and had only 1sec of recording which is nothing.
Me… well. I finished my counselling. It did help but it feels like it opened a Pandora box and left it opened, and without a closure. So I contacted the lady to see if I can maybe pay for a few sessions to end few subjects. We explored my childhood and some of the things we discovered, like that my childhood would actually qualified to be called abusive – is a bit difficult to get used to. I also completed my CBT online course which actually I did’t like at all. They put me on a waiting list for a telephone one to one therapy but shortly after I was told I was allocated a face to face sessions! I had one which was good 🙂 I also read that apparently you should never ever do counselling and CBT at the same time…. as they contradict each other and make more confusion… oh well.
Friends and family are still a blessing. Well….. mostly friends actually. My family decided to add to the problem and instead of helping my brother keeps ringing me drunk and talking about him completing a suicide as he cannot cope with the relationship he has with mum….. I mean I can understand as I’ve just explored my childhood and he had a very similar one… but he’s 45! Alcoholism isn’t an answer. So on top of everything else I’m worried about him now.
I had a set back again after two last seizures. I felt desperate. I texted everybody possible I could text last night… I felt so down and so lonely. So annoyingly I do feel like other people problems seem so much easier to cope then mine. I’m jealous of people travelling and having good time. It’s wrong I know. I’m embarrassed of feeling that and I’m embarrassed of being so weak. I’m embarrassed of getting people attention and how desperate I am to get help. I have a week off work and instead of feeling happy I’m scared how I cope at home.
BUT on the positive I don’t feel completely down or anxious. For the first time I do feel on the edge – between feeling completely useless and feeling I’ll never be able to cope and a feeling – I can do this if I want to have normal life again.