Perspective

I’ve been reading through the old posts on this blog and trying to correct all spelling mistakes. I don’t think I caught them all. But it definitely showed me how much things changed. It also showed me how negative I am. And also how big progress I made with my anxiety.  Things are actually okay at the moment. Graham still isn’t feeling 100% but towards the end of the tablets he does feel better and better. It will take months after chemo for him to properly be himself again. He has never ever made a fuss about himself and what’s been happening…. sometimes I think he dealt with the chemo much better then he ever dealt with a common flu. But is there anything worse then a man flu??

And yet I’m reluctant to just think everything will be okay. Anxiety has a reason. And my reason is to protect myself from negative emotions. Protect myself from being hurt and exposed to negative feelings. It’s my brain defensive mechanism. Completely similarly to when I was younger and my brother used to say NEVER tell anybody what’s happening at home. So I never talk about the most private feelings. And to put myself completely out there I’m going to post this blog. I don’t expect huge answer. The truth is that’s what is really important for me there is completely non meaningful for everybody else. It’s natural. But I will post the link on Facebook – something I’ve never done in my life. Talk about my real feelings. Not that I lied. But I just avoid talking about my deepest feelings.

Apart from the beginning of the year, when I was so desperate I was telling I was scared to anybody, completely random hoping that they would say something which would sort the situation out. Instantly. Of course it didn’t happen and I was more upset.

I’m definitely calmer. I start to believe that the worst is over. And yet I don’t want to believe it in case it isn’t. Time is the only answer and quite logical would be not to worry about it now as it cannot be changed either way. I think the way to go is to continue watch my thoughts, continue expose myself to uncertainty and continue with my hobbies so I can have moments to switch off.

It’s also good to have a moment to just let the thoughts go freely through your head. My counsellor asked me last week – if I sat down next to Graham for 20min doing nothing, would I think it was waste of time? yes I would. I need to do something. When I watch TV I do my paintings or playing a game. When I have time in the afternoon I sew or catch up with tidying. I never do nothing. I do like to go shopping and have a break to drink coffee but yet I’ve never sat down in the garden with a drink and just let myself BE. Maybe only on holidays. But never in everyday life. And it’s important to let your thoughts and emotions to settle. To feel them, named them acknowledge them and let them fall into right place. Maybe that’s why I feel anxious in the evenings as when I finally switch off and go to bed the process starts then.

It’s ok to like yourself. I’ve been talking about the quilt. I’ve got the idea when Emily was born and kept her favourite baby grows as I could’t part with them. But keeping baby clothes in the loft is pointless. So I thought I’d make a quilt from them so she has a memory of it and they are actually useful again. Unfortunately I never got round to do it and then Aurelia was born and I have to make two quilts like that. It took me 9 years to actually start the quilt. I have started now both and I’m half way through!!! But when I told about it to my counsellor she asked – who is judging me on the time?

Nobody. Just myself. And it’s me who set the rules and yet again I find it so strange that it’s also me who judge myself on them. And cannot change them. Nobody else is doing it to me. I’m my own best friend and worst enemy.

Perspective is really everything!

 

Chemo cycles

I’ve been thinking of writing for a while but there was always something coming up…. I was going to start before the chemo session to say how scared we both were. Graham even said “from all the session this one I’m scared the most of”. Me too. I wasn’t sure if the 25% reduced dose they did on cycle 6 was going to cumulate now and it all would go wrong. Cycle 7 was horrible in terms of Graham’s arm pain – he expected worse now. And I feared the seizures returning.

All the chemo cycles were different. There weren’t two the same. First cycle was probably less scary as we didn’t know what was coming. If I think now back to February/March this year, I really don’t know how I survived. I was so deeply depressed. I cried driving in the car. I almost had an accident. I didn’t see anything positive at all. It was truly horrible and black time. First cycle was difficult as he had full dose of chemo with all the regular antisickness medication and full dose of steroids. He had three seizures on Friday night after the treatment. They were horrible. Seizure one was about midnight then he went back to sleep, seizure two was about 1.5 hour later and he was slowly waking up from it and seizure 3 was later but he didn’t gain consciousness for such a long time that I did rung 111. They send an ambulance. One of my friends came at 2am in the morning to be with me and I’ll never forget that. The next day was meant to be Graham’s father and brother birthday party but Graham was nowhere near state to go. He slept the whole day after to regain energy.

Cycle 2 was the best from all I’d say. It didn’t affect his much at all. Apart from the neuropathy – as the Oxaliplatin is affecting Graham’s nerves badly. He has hypersensitivity to cold, cannot touch cold things. And has a risk of laryngospasm when breathing cold air (funny, the first cycle was in the middle of the biggest snow fall in UK in years). Graham’s arm hurt from the IV chemo.

Cycle 3 was bad again. He felt very very sick to the point he actually was physically sick – that’s the only cycle when it happened. He didn’t eat or drink much. And on top of it the chemo tiredness was strong. He was managing without any steroids or antisickenss medication as they all have epileptic fits as side effects. The seizures came back anyway, a bit later. Two in a row. Maybe only two as I did manage to keep him awake after the last one. Yet again my friend came and stayed with us.

Cycle 4…. was ok. I can’t remember anything significant from that one apart from that it was in the middle, so not the beginning not the end. It was dragging. The nausea was bad. Overall it wasn’t as good as cycle 2, but we got through it.

Cycle 5 was bad again. They started Graham on new antisickness medication which looked expensive to me. They did it because he wasn’t coping with the nausea without any medication. I checked and seizures weren’t one of the side effects on the new anti sickness. Hot flashes and seizures came back. They came in the evening the day after chemo. Two this time. The only one I haven’t witness myself but his brother was with me and actually second seizure happened next to him when I was at work. Yet again the rest from it took few days.

Cycle 6… reduced dose 25% was better. Sickness was still there, arm pain was still there. Neuropathy was getting worse. The pin and needles in the arm and tingling was still there and getting stronger.

Cycle 7 … the arm pain was unbearable and lasted soooo long. As Graham’s brother said Graham was “more vertical then horizontal” during it. It was almost the last one… ALMOST makes such a difference. So close but yet so far.

Cycle 8… now. the last one. Whatever happens you can think it’s the last time we feel like that. But the fear is there. And last time or not Graham still has to go through it. But it does help it’s the last one. LAST. I can’t believe we are almost there. For me it won’t be the end until the last tablet he takes.

But what next? Life is the same but everything has changed. Everything.

Tomorrow

It’s World Cup at the moment and England is playing Colombia. It went to extra time so at the moment it’s 1:1. I though I’d write something while it’s still 30min when my husband is not present in mind lol

Tomorrow he won’t be present again but because of chemo. I was doing so very very well. I had a small/big victory or achievement yesterday. I was so tired that by the evening felt everything was just confusing and I didn’t know anymore what to feel, what to think, what’s right or wrong. I felt my anxiety rising… but I managed to tell myself – it’s not your reality. It’s your mind playing tricks on you, go to sleep and tomorrow it will be different. And I did and it was different this morning 🙂

Unfortunately I haven’t had enough rest and today I’m tired too and I’ve had quite busy day and my mind plays tricks on me again 😦 I do feel anxious again. I think it’s because the chemo tomorrow. We sort of expect the seizures but hope they won’t happen. As so far they happened 1st 3rd and 5th cycle and now it’s 7th…. it’s nothing scientific and I don’t know any medical reason why they wouldn’t happened like that. Maybe it’s 5 week time and it’s just a trigger or maybe they wouldn’t happened anyway. Maybe they won’t happen ever again and maybe the medication is working. It’s all maybes and I do know very very well that it’s not worth thinking about it as it’s no point worrying about things which are not under my control.

I also had an interesting session today which made me realise how much I plan everything, how much I organise my life – from knowing what is going to happen the net day to weekly dinner planner. I hate surprises. I’ve never connected it with anxiety but it does of course make sense – plan so there is no uncertainty. Bingo.

I need to work in small steps to expose myself to uncertainty but it’s difficult to concentrate on it when such a big event is coming tomorrow. I’m a bit lost. I don’t want to take a step back and have a set back.

I do realise very well though that the seizures are just a trigger. I’m not actually scared of them but the fact they are so unpredictable is what sets off my anxiety. In fact, on my better days I even had times when I wasn’t scared of them at all.

But today I have a worse day, I’m still tired, I have a headache and I’m some how naturally worried about the chemo tomorrow. And that does not help with me working on my GAD. I do find this sometimes sooo difficult 😦

Mid June

Graham had his 6th chemo cycle last Wednesday. I have to say my anxiety was sky high knowing what does happen after last chemo. Especially that last time he started so well and then all of the sudden “crushed” down and had seizures and was unable to do anything for a week.

They have reduced his doze this time to 75%. He seemed to cope well. I’ve worked 4 nights and noticed that when I’m tired after nights my anxiety goes up.

It’s World Cup as well so we have 3 games in a row on TV now. At least he’s happy. At least I suppose the resting after chemo makes some sense. And I don’t mind. I’m not football fan but I like seeing him happy. Well at least as much as he can be.

It wasn’t all good, he still felt washed out and sick. And the over-sensitivity to cold is just awful. His hands and arms are aching all the time. He has pins and needles and cannot touch cold things as they give him electric shock. There is a risk it would never go away and his peripheral nerves would be destroyed forever. But we have 2 more cycles left.

It’s a strange situation. I was even told I may have Generalised Anxiety Disorder. I can explain to myself perfectly well all sensible answers. I can say there is NOTHING I can do. There is no point in worrying as it doesn’t change anything. I know that if things are all right I should take it as a gift and enjoy. But I worry that something bad may happen. Anything. I don’t even know why WHY I see seizures as something that BAD. It’s not pleasant but we come across many unpleasant things in life and kind of deal with it. It’s scary but I’ve seen 9 of them so I suppose it’s not new. I have a feeling if I let myself believe that things are better I’ll get very disappointed soon and then I’ll have another set back. And yes, I dealt with them before so I can deal with another one but I still feel anxious. I’m trying to work on the anxiety cycle and break it but it does take time. Sometimes I even worry a bit that I don’t worry. As I did have days I was actually calmer.

I certainly didn’t expect such a journey inside myself this year. I didn’t expect such a bumpy ride through life this year either. I’m at a bit of a numb point at the moment where I have really no idea which way it will all go. I also have hope and apparently it’s good to have hope but I don’t want to fall crushing down and get bruised again.

We are strong in the moments we feel weak

I said in on of my previous posts I started to look for people in similar situation. I posted a post on few Facebook groups asking to speak with partners of people with epilepsy. I got a huge response. I got about 50 messages? some of them are just one message conversations, but even those had advice in them. I tried to put together all I researched.

I noticed from the messages that people feel the same as I do. And you know what, it’s OKAY to feel like that. I think I deny myself negative emotions, like I expect myself to always be happy and perfect. But it’s not possible. And the situation I’m in is difficult. And it’s fine and it’s normal to feel like I do. As from the messages I had, I found that most of the people at least at the beginning of their journey with epilepsy felt the same. They felt frustrated with life, worrying and hopeless.  They said they were constantly watching their partners or children. Their children had hard time to adjust. That it’s difficult to deal with it. They would give up but they loved their partners. They were afraid, afraid of new life, afraid the partners would hurt themselves and afraid of death. They just wanted their family to be ok. And one sentence I think had the most meaning in it, when someone said that people don’t realise how much it impacts your life when the partners AREN’T fitting.

I got much better advice how to deal with someone who has a fit. Better then the hospital which gave me no advice at all. The most striking advice for me was to smile at people coming out of the seizure. The other advice was to keep them safe, recovery position with cushioned head. I was told to keep seizure diary to work out triggers, medication and side effects. Take medication regularly. It also helps to have a rescue medication when they have a seizure lasting longer then 5min. It’s also important to be there for them and reassure they aren’t alone and also educate those around you. Some people had a code words for when seizures were coming. Others liked hot bath after, cold flannel on the head, head rub or cold yoghurt if tongue was bitten. Whoever had a seizure will need a long sleep afterwards to regain energy. I was also told to increase Omega 3, have high quality probiotics, organic food, reduce toxicity and use natural products. It was important to have enough sleep, exercise, keep hydrated and avoid alcohol. That’s just from other people’s messages and experiences. But it loads!

But I also got an advice how to deal with myself and my thoughts and feelings. People said it was important to prioritise self care and do something for myself, have hobbies. It was easier to take a day at the time, give time to process what happened. Give yourself patience, as you are dealing with something you’ve never dealt before. Do as much research as possible, contact organisations, talk to others. Take care of yourself. But also don’t forget you are family, make sure you do things together. It is ok not to be ok, it’s ok not to be a Wonder Woman. Accept you are going to make mistakes and learn the best way to handle situation (so important!! and yet so difficult). That’s the one I knew, worry only about things you can control and try no to think about things you can’t control. Have strength and courage to deal with new normal. It is something you do learn to handle. And time TIME – the most important aspect. You need TIME. The more seizures the easier they get to handle and the better you cope (as sad as it is). It is possible to manage it enough to have an enjoyable life. It may not be a life you wanted, but it doesn’t mean it can’t still be great. Be grateful for things you do have and do not concentrate on things you don’t have. Learn to accept it and grow with it. Don’t live your life in the fear of unknown. Make the best of what you have. Remember it could always be worse. It gets easier, it becomes part of your life and the seizures become less scary. Another important thing is to not look at epilepsy as a bad thing but as a part of who the love ones are. Don’t anticipate and think constantly it will happen, but just be prepared if it does. Take emotions out and deal with the situation as an emergency. Don’t feel sorry for yourself. We are strong even in the moments we feel weak. Take counselling. Do self-reflection, meditation. Take support from family and friends. Life goes on, times move forward and you only get one shot at the life. Nobody knows what tomorrow brings so just do what you can each day and be as happy and healthy as you can. Seizures aren’t HIM, that’s what he HAS.

Over the time you will learn the best thing to do and that there is very little you can do.

And time, 100% TIME.

Isn’t it a beautiful advice??? I was so touched by the response I got and by the support. I was so amazed people are dealing with it everyday and coping so strongly and bravely. I’m overwhelmed by the support they showed and by the way they dealt with the situation. Thank you.

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.

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.