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.

Side effects

Today is all about side effects.

Graham had his first IV chemotherapy yesterday and lots of steroids. It’s again the unknown – how will he react? How can we cope with it.

But it is also about the side effects of this situation we are in. The side effects which we have to cope and adjust to. I’m not sure if I’m a pessimist. I tend to think I am. I seem to be unable to deal with life hurdles… I think a trip into a childhood and luck of imbedded coping strategies would be an answer. It’s a good day for it – it’s cold and I mean COLD outside and snowy and -5C…. but it may be a subject for another post. If I get to my childhood I’ll never leave.

The side effects…. There are physical and emotional and psychological. Social. They all interact. There are side effects which only Graham has to cope with but there are side effects which the family has to cope with. It came to me as a surprise recently when I had to describe myself as his carer. Yes, I’ve become a carer do  I want it or not. I’m 37 (still!) and I’d never imagine I’d be carer for my husband at this age. Our girls are 8 and 4. What we should be doing is thinking of house renovations and planning next holidays.

But life is not like that.

Life seem a struggle in some ways. Never enough time, money. When you are a mother life also seem to be a guilt. Guilt of not enough time, not enough playing with children, not enough time for myself, not enough nutritious meals, not enough…. and yet now I miss that “not enough”. As the situation when I found myself as a carer…. is not comfortable. I don’t like unknown and surprises. Maybe it’s me. Maybe someone else would cope much better. I intend to go on and to the best job I can. As someone said to me – when you go through hell just keep going.

But the side effects… physical – tiredness, lack of sleep, fatigue. Side effects of steroids – agitation, hiccups (4 hours of hiccups!). Emotional – worrying and stress. The side effects terrify me. The physical ones we can deal with. The emotional ones are the ones which are the problem. I don’t know how to cope with things. I probably need a strategy but what is the strategy. I have no energy and I’m simply scared. I’m scared life will never be ok. that we won’t enjoy it again like we used to. I’m scared what happens if the chemo won’t help. And I’m scared of the seizures.

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.