Another month down the line…

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.

Nemesis

So….. it’s been a difficult week. It’s been another difficult week I suppose, but this one filled up with emotions and thinking. I was supposed to make it more of a “proper” blog full of photos of my recent bakes and cooking skills but …. I forgot to take a photo of the cake I baked and then I had a major setback.

I suppose my life has changed completely since 30th December 2017. It was difficult to manage with Graham being in the hospital and juggling the work, home kids and looking after him, the everyday trips to hospital. Even not for a moment then I thought it would be cancer and he would start epileptic fits. Even if the cancer went through my mind, I would have never ever ever in million and trillion years expect the epilepsy. I thought life was difficult in December/January…. but it became worse.

I can’t explain the feeling I had. I was petrified of seizures. I can cope with cancer, chemo, side effects and moods…. but seizures, their unpredictability scared me. I desperately searched for help which actually turned out more difficult that I expected. Mental health care isn’t easy accessible. Maybe in different counties… I don’t know. I have received help now but I actually has never been formally diagnosed with anything. I felt down and alone and petrified. Life lost it’s meaning. There was no light at the end of the tunnel. I felt like running away, leaving it all. I hated every moment of what was happening. It was a dark place. Everything seemed confusing, out of control. You can’t just “get on with it”, you can’t just search for tips online or call Samaritans. There is no energy to carry on with houseworks, cooking seems a chore. Having bath seems a chore. Dealing with children is actually an impossible task. But I did carry on going to work as it was my only escape from home. At work I could be myself, not a carer, even working as a nurse. I was free from the constant, CONSTANT worry about my husband.

When we had the 6 weeks seizure free period I started to believe things were improving. I let myself to fell into the false sense of security to believe it. I felt happier… and then Graham had another two seizures. He had one first, in his sleep as usually and I let him sleep… as firstly I was worried he would be tired but also I thought I’d see if he remembers what happened in the morning. But he went to sleep after his seizure and had another one about 1.5hours later, exactly the minute I decided to lie down and switch off the light and get back to sleep. So I had no sleep that night, nor I had any sleep the night after as any movement he made woke me up. Neither I had any sleep a night before as I was working. So after 3 nights no sleep I wasn’t a real human being. But things got gradually worse. Things got worse even when I went to work and thought I’d relax. I didn’t. My anxiety grew bigger and bigger, I had a feeling something horrible is about to happen to my kids, to me to the world. I don’t know. Just a horrible feeling of being stressed all the time, worried all the time at the back of my head about everything.

I had a counselling session that week. I thought it wasn’t particularly helpful at first, but it drew my attention to something. It’s a complicated issue reaching back to my childhood… but I realised after the session couple of things. Firstly generally I realised that the voice in my head is my mum. All the doubts I ever had and all the times I felt unsettled in my life was my mum and my upbringing. But that’s a subject for a completely another story. The other thing I realised was the fear. I had that fear in my and maybe everybody does to some extend, a fear of scary things. A fear of the inhuman, cruel, bad things. Things out of control. And I realised whenever I was scared of something I used to run away from it. I don’t usually conquer my fears. And then I realised that’s the exactly the same fear I was feeling. But wait a minute, I was scared of driving and I do drive now…so it is possible to overcome your fears. I talked to myself to calm down. I tried to reason. I stop denying the fear and accepted it. I tried to accept the situation. I tried to accept it is horrible, it is happening, I am afraid, it is difficult and it will be difficult for a while yet.

This fear – it is my nemesis.

When I tried to tame the fear it seemed smaller. I still haven’t yet slept a night in my house to see it in practice, but I calmed down and lost the overall feeling of anxiety. I realised that life do goes on. Yes, seizures happen and yes they are at the moment the central focus of our lives, but life do go on. There are things happening between the seizures, they are children to look after and watch growing up. There are things which still make us happy.

And mostly I do have to work out a strategy to deal with what’s happening. I need a plan in place. I need to prepare myself if seizure happen that’s it, I won’t sleep the night, I’ll become a nurse on duty. I prepared myself something I like doing, I decided I’d update this blog if need to, maybe  do colouring, watch a film.. I don’t know. I’ll occupy myself not to think but be able to treat Graham as my patient. This strategy is yet to be put into practice but…. it’s something isn’t it. It’s something more constructive than just being afraid.

I also signed up for a epilepsy awareness course, and tried to get some help from Bucks Carers. I don’t know if it’s all going to work. I don’t know how it is all going to work. But let’s give it a go.

Chemo is a bitch

So, it’s been long time since last post. I started this blog thinking it would help to off-load my emotions into the virtual space, where probably nobody would ever read it. And it does help, but in the middle of all of the events I didn’t even have time to write.

A lot has happened. And nothing changed at the same time. We are still going through chemo. It’s still cancer. He still have seizures.

But… it’s spring now. The sun is shining finally. Even if not inside, definitely outside. I have better and worse days. I still have the fear in my heart. So, last entry was 5th March…. it was shortly after the 3 seizure night. I was in a very very very bad place then. I can’t remember exactly when things happened, but I started online CBT course. That I still continue but it’s not very helping. I think overall to manage worry and anxiety would be good. And I’m sure some tips can be useful and worth remembering. But… it hasn’t helped in this situation much. Maybe it gave me an illusion that I was doing something??

I’ve seen GP and started antidepressant. I wasn’t a complete believer in antidepressants before, but I was desperate. They do work. It did help. It took the edge out of things. But you need to have a good one, I tried one before and it made me feel horrible. The side effects weren’t worth it. It gave me suicidal thoughts. The one I’m taking now makes me slightly numb…. like I cannot feel extremes. I haven’t got panic attacks anymore. And for a while I felt pretty good until the seizures happened again. Then I questioned if my dose was enough as although no panic attacks, I still have the fear in me. And the anxiety.

I started counselling. That’s really helpful! At first I haven’t been sure where this would go. We started from exploring childhood etc But things started to fit into one piece. I can see connections, what has shaped me. I can be more critical to what I’m thinking and saying and why I do that. We also talked about seizures and it helped to tame them a bit. They are like a beast…. they need taming.

But one things hasn’t changed… chemotherapy. My husband had adjustments… change of anti sickness medications, reduced steroids. But chemo is still a bitch. Yes, it kills cancer. It’s out only chance, but it’s a bitch. I can’t describe how it feels to have it but I can say that watching someone going through it is horrible. It takes all the energy out. It makes you sick. It has an impact on all the family. It is a root of the fears. I know he hates it with passion. 8 cycles. 8 intravenous doses of drug. 112 days of tablets. 1344 tablets to take. We are on round 3, not even half way and it already makes it soooo difficult to see through and past it. You are washed out, you are sick, you have hypersensitivity to cold. Pins and needles all the time. You are fed up. You are agitated. You are tired. You are there but you are absent. Life goes by – you want to take a part but can’t.

But we are warriors. We fight to get to the light in the end of the tunnel. To live. To travel, to go and eat in a Michelin star restaurant. To see our daughters growing up. To have grandchildren. We fight to live.

Today

Today wasn’t a good day. It was and it wasn’t. Today I need to just flow my thoughts out of my head as it’s bad. Today was a day when my husband wasn’t at home and I didn’t have to worry about him having a seizure. So, should be easier, right? But yet, I woke up not really wanting to get up. Making kids breakfast was a chore. Then shopping. Then the sun was shining so I decided to wash my car. ONE achievement of the day!! Then I met someone who was going through similar. We shared our feelings. I was soooooo amazed she thought the same as I did. She felt exactly the same.

She said she threw her wedding ring at her husband twice saying she had enough. I decided after last weekend it was it, I’m leaving. I know I don’t want to leave him. I love him. I just don’t want to be in the situation. She shared my fears, my worried, she spent evenings at home crying. She shouted for help as I do and nobody heard.

So it should be good, yeah? and it was at the time. And I kept strong and then all of the sudden, 6pm comes…. I’m in pieces. My heart is racing… my thoughts are just speeding through my head. I need help NOW. I feel I can’t cope. I feel there is no way out of this. There isn’t!! it will NEVER get better. I’m gasping for air. I feel so disappointed in myself. So fed up with this. I sound like a broken record. am I sucidial?? I haven’t planned anything. But I don’t feel like eating, I can’t carry on any everyday activities. I can’t concentrate. I’m scared. I feel the overhelming feeling I won’t cope. There is no solution. There is nothing I can do.

Ironically my GP called me and she suggested to try another anti-depressants (I tried one before but the side effects were terrible). I agreed. I’d agree anything. Just to feel better.

The girl I saw today suggested another help centre but it’s in Oxford. I’ll go there.

Work Occupational Health called me earlier today as well and they said the waiting list for a therapist is looooooooooong. It won’t be till several weeks.

I’m so desperate right now that I’d try anything. I dont’ sleep well, even when I’m on my own. I hate the feeling of panic. I hate feeling so lonely in this all. I feel like drawning. I just feel awful.

3/3/18

One night, three seizures.

A friend came 2am to help me.

My husband ended up in hospital, but they discharged him home. Still no answers. Still not further anywhere… and the fear is bigger 😦

The U-word

So, there was this lovely blog which brought into the world the C-word. I haven’t read the blog although I did want to do it. But I watched the BBC drama about it and after I knew how it ended I couldn’t bring myself up for reading it. And then…. it was too close to home.

The C-world become real. I never thought it would. Things like that do happen to others but not us. Then we also had the E-word. and finally the overall U – word. The UNKNOWN.

So, I thought last few years were difficult. They weren’t. There were little struggles but I wish I had them now. We should really appreciate little things in life. So trivial but so true!! People go and enjoy life.

I’m 37 (still!) but soon to be 38 Polish girl, mum of two. I’ve lived in England 13 years. I’m a nurse. I’ve seen things. I’ve been there when people die and are born. But the recent events in my private life has brought me down. I thought I was strong…. it’s a Polish thing to be strong. To deal with your own problems. To take it “on the chin”… but I’m not strong. I crumbled completely like a biscuit in a tea.

My husband Graham had ulcerative colitis, nasty thing which makes poo your friend as you never ever have it under control. And the history of the illness can give you the C-word – cancer. Which has happened. I’ll never forget the moment we discovered it was cancer. But before we (he) had flare-up, steroids, hospital admissions. So yes, I thought it was tough. Then he had routine endoscopy and there was a stricture. And they did say you may have cancer, but who would belive in “maybe”. As Graham said  – I can’t base a decision to remove my colon on “maybe”. But we do, don’t we? we wear seatbelts as we “may” have an accident. But at the end he ended up obstructing and with an emergency surgery to remove his colon. We learnt about stoma. We starting to learn new life… when the cancer appeared.

But that’s not all. It was enough to cope with but it wasn’t all. Then he had two seizures – so E-word. Epilepsy. How? Where from? Why??? Wasn’t it enough already??? Investigations and the U-word. The UNKNOWN.

We don’t know if the cancer has cleared or will come back as mets. We don’t know if the chemotherapy will help. We don’t know if the seizures return. We don’t know if the medication help. We don’t know….. if we cope. Well I don’t. That’s why this blog. I thought to be honest – I thought I’d write my feelings as a coping strategy. About everything and nothing. About life. If someone reads it – great. Help me ad support me please. If not – it has the same effect really as writing to Samaritans…. therapeutic.

Life is rather a dark place at present…. but I’m trying.