Life is too short for long pity parties

“Life is too short for long pity parties. Get busy living or get busy dying”.

That’s the most inspirational quote I’ve read recently. It’s been a while since my last post and a lot has happened. I was thinking of writing sooner but I needed a right moment to be able to summarise everything.

Things are different. I got to the stage late August when I had to switch off something as I felt really pulled in all directions. I needed to rest and re-charge batteries and think what’s important. What’s worth concentrating on. What actually caused me to react like that was someone saying to me “I thought it finished now”. It’s quite common I think for people to think: ok so you had a rough time and now it’s finished, chemo finished… it’s all fine then, right? Well… no, actually it’s not that simple. Yes, I’ve been waiting all year pretty much for this nightmare to finish. And it has and ok so now what? Life is never going to be the same. Cancer is something which changes you and your family forever. You can’t go back to before cancer. You KNOW about it now. You revaluate your life. Your life is different.

When my father passed away I noticed something which now applies to few other situations in life. When he died, people all of the sudden decided into those who KNOW and those who DON’T. People who get it as they have been there themselves and those who haven’t got an idea. It’s not to say that those who don’t know, cannot be at the same time very friendly, understanding and empathic. But they haven’t been through the same.

Things did built up at the end of chemo, but I didn’t crumble. I put myself first and realised what I need and I did it. I felt proud of myself. I started to stand up for myself and believe that I can be right. I started to believe in myself rather then others.

I havne’t been at work for 3 weeks, I switched off that completely. It helped to narrow the  things which were happening. We went on holidays and I drove first time on motorways and did few hundred miles there and back! I was sooooo proud of myself. I can do that! I even kind of liked driving on motorways. Something I didn’t expected.

When we got back and I returned to work I realised I actually got now something in a shape of coping strategies. I have never been able to use them before. I learnt to understand that feelings are not me. I have feelings and they are temporary. It’s ok to feel frustrated, it’s ok to feel angry and it’s ok to feel worried at times.

It wouldn’t be possible without the counselling I had. I have finished now my CBT therapy, I have a catch up meeting in 3 months time to decide if I can be discharged. I have had a break in counselling as well due to holidays but I’m still continuing that. But I also discovered Katie Piper. I discovered her before the Strictly Come Dancing actually. A very long time ago I saved some programmes I thought were interesting on my favourites on Channel 4 application. And she happened to present one of them. I then researched her story and starting reading her autobiography. And then she actually announced she was taking part in Strictly. I so wanted to write to her but it’s pointless now when she is in the TV show as I’m sure she gets lots of post anyway. But I do admire her not because she is inspirational and she went through hell (and she did, and she is inspirational) but my magnet was the way she cope with anxiety. The way she described how she felt was exactly what I was writing here. I have minor PTSD no doubt. And I realised that people fall and get up from much more difficult blows that life gives them. And that what happened to us wasn’t good but it is definitely possible to lift yourself up. It’s all in your mind and attitude. You have to work hard though, nothing come easy. I definitely felt confused and had many moments of this not working. But then slowly things started to fall back together.

I was also recommended a wonderful wonderful book by Regina Brett “God never blinks”. It’s 50 lessons for life and they are amazing. Out of 50 everybody can find the ones closer to their hearts but the one which stood up for me is the one opening this post. Life is too short for long pity parties.

Ok life isn’t perfect and I know the road is not yet complete. I still have little set backs. I still feel very very vulnerable. I still don’t know if the seizures will return and if they do how would I react. BUT I have now moments when I think they aren’t as scary as I kept thinking before. Only moments thought but it’s an improvement.

Going back to work is difficult as my older daughter developed separation anxiety and she shows classic signs of anxiety now. And I don’t want her to be like me but I don’t quite know yet how to deal with it. So, things aren’t as easy as it may seem but I decided to play the positivity card. Let’s get busy living, not dying.

 

 

Feelings

My counsellor told me to write about my feelings. I seem to have a strange relationship with my own feelings. I take them as facts. I feel so it must be true. Which objectively sounds quite absurdly. Although on the other hand, I remember from the Polish book by Andrzej Szczypuorski “Mass for Arras”. He said there that things only exists by their name. If you call a rape a punishment it becomes a punishment. So if you name a certain situation based on your feelings, does it become your truth?

My main feeling these days is anxiety. I wonder if I got some mild form of PTSD? Maybe I’ve learn a response after the first time I saw Graham having a seizure and my mind just reacts the same way. The first time it happened it was scary. I didn’t come across any seizures before, even though I’m a nurse. We were just sitting at the dinner table, having dinner. When we finished I got up to take the plates in the kitchen when Graham made some strange noises. He was trying to encourage our youngest to finish eating, so at first I thought he was making fun with her and thought – why is he doing it? he should be serious, not playing with her. But I don’t remember when exactly I realised it wasn’t fun, maybe when I looked at him. I don’t quite remember how he looked as all I remembered was the feeling of impeding doom. I knew something bad was happening but I didn’t know what. And how to deal with it. I don’t remember moving, but I know I was straight away next to him as he felt backwards and I was holding his head, making sure he doesn’t hit it on the stool behind him. He wedged himself between table legs. He was shaking, his eyes fell backwards and he was foaming around his mouth. He produced a lot of secretion! I was shouting his name in panic, I did panic. I checked his stoma as all I could think was – he had a surgery and it’s something do with that. And then I thought I would have to do CPR on him and I can’t do it on a chair and I can’t do it alone, that’s when I turn around to get a phone. But my older daughter was already there with the phone in her hand. I dialled 999, still panicking. The woman there was brilliant!!!! she talked me through it, she calmed me down. I managed to move him off the chair on the floor into recovery position. I was sitting next to him on the floor. After the shaking he stopped breathing for a moment and then started breathing very loudly. That’s when I moved him. I remember I never felt so relieved when I heard the ambulance sirens!! When they came I was so grateful. The paramedics are lovely people. I do admire their job. They took Graham to hospital and although I work there (not in a&e) I have to say that the stuff was less nice. I do understand when they come from, for them it is just another seizure, not really an emergency. Not life threatening – and maybe next door there was someone who needed CPR or had great degree burns or a child which needed help with breathing. I do understand that. But when they told us – you had a seizure, you can’t  drive for a year, wait for an appointment with neurologist, bye! it was a bit like – well… what now???? It’s actually quite a big deal not to drive. It’s a big deal to have a seizure.

Well, how that all made me fell….. scared. Anxious. Petrified. Down. Depressed. Panicking. Hopeless. Helpless.

Every evening now about the time when the first seizure happened I feel incredibly anxious. Days are easier, but still any sound, any scream, loud noise makes me jump. Makes me run to see if Graham is ok. I get confused when children playing loud. Many many times I jumped when someone made strange noise for fun, my heart was about 150 beats per hour at least. It’s a completely different life.

I can reason with myself perfectly. I shouldn’t worry about things I can’t control. Don’t worry about things not dependant on you. Worrying won’t stop a seizure, if it’s going to happen it will happen. I know all of it. And yet I do feel anxious, I can’t relax. It’s always there at the back of my mind.

Feelings are connected with thoughts, thoughts are connected with actions etc. Most of us probably heard of it, a bit of CBT here. But I yet have to find out my relationship with my emotions. I feel them so strong, in that circle I think my emotions are the strongest. it feels like they influence my thoughts although it’s probably not true. So my investigation inside my self keeps going on. I need to discover or maybe re-invent my relationship with emotions as maybe that may change the thoughts I have and how I perceive the reality?

End of May

So, we have had another month passing by. I would like to write a bit more often as I now decided what I’ll do is when the chemotherapy is over, I’ll actually put a link to this blog on my facebook page. As a sign a stage has finished. I cannot wait till the end of chemo. Not that it would end all our problems, but definitely some of them. It may not resolve anything. I actually was told and managed not to look pass the chemotherapy but I have no idea what the life will look like after that. I know pray for getting back to “normality” but… what the normality is???? there won’t be the usual normality. There will be a new one, which we’ll have to build again. Scary. But I don’t need new scary thoughts. Everything is scary.

What I need to do is tackle my anxiety. Unfortunately since last post things changed. I was very down. And up and down and up and down….. But I’m acting on it.

So, few things have happened…. I know one person is reading this blog and I need to refer to our conversation! sorry, but there was some truth in it: I’m going around same subject in circles and talking same old rubbish over and over again. So why is it so difficult? So, there are few things….

  1. I restarted counselling. I had a first session, but after 4 weeks break we needed to catch up with what’s been going on. My counsellor seems to think my fear isn’t about seizures as such but about me and managing them and believing in myself. Which yet again leads us to my childhood. I realised something sad. The counsellor asked me what do I worry about and the list was looooooong. And then she asked me – so who is worried about Agnes? About me? And I couldn’t find one name 😦 People say they do worry about me but I don’t believe them really. and it’s sad, isn’t it? That led me to research about childhood without love (as that does come from childhood) and I found an interesting article about unconditional and conditional love from parents. I seem to had conditional love, so basically I’ve learnt that I would be loved if I do what my mum wants. So now I do what other people want me to do and put themselves in front of my own needs. That unfortunately brings very low self esteem. And maybe I just simply don’t really believe in myself that I can manage that situation. Maybe I’m scared of myself.
  2. I will continue CBT therapy, but that’s not until next week. So no news about that.
  3. I have some self-help books about worry. The problems with books is that I do have them but I have not time to read! Or I’m not relaxed enough to concentrate on them. That’s a problem. But I’m intending to read and maybe reduce my anxiety.
  4. I started to search for similar people in similar situation. Well, I really should say people in similar situation. It proved hard. I called Epilepsy Action – they do have one group which meets up every first Tuesday of the month, but 40min drive from here. I’ll go there next week. I also called epilepsy society. I was encouraged by their helpline and the description they give on their website. They even had described a day from helpline advisor…. it sounded emphatic, helpful… but actually although they were nice and supportive – it wasn’t that helpful 😦 Maybe I’m working in the wrong profession, but I can hear that they cannot give any definites. So… I said, I would ike to know if life would ever be happy again. And while a friend would tell you – yes, of course, nothing lasts forever, they cannot say that. Probably in case you ring them back and sue them that they’ve promised something which hasn’t happened. And also they aren’t medically trained, so they asked me all that details but couldn’t really comment on them. I suppose it’s good to call and get it out of your chest but if you want something back, unless it’s a proper information about benefits, finance or things like that – they won’t help with emotions.
  5. I decided to plan days ahead not to be alone. Of course I can’t have someone here 24/7 but meeting friends helps. I’m not yet at the stage when I can bake cakes and serve them to friends. I’m hardly at the stage where I can clean the house 😦 It scares me somehow to have days off work and stay at home.
  6. What else? oh yes, I have a idea…. maybe if there isn’t any support groups in the area, I can start one myself? it’s of course a commitment… It’s something to think about. I don’t want to rush to anything just yet.
  7. I let myself plan things for after chemo. So, here we go. An afternoon tea in a posh hotel in the area to celebrate end of chemo 🙂 then a night out in the central London – with theatre to celebrate my birthday and out 10th wedding anniversary. A dinner out with in-laws and brother in law to say thank you for all the help. Actually maybe we can take them to the afternoon tea? that’s a possibility. And a day out in London again, to take my girls to Madame Tussaud’s and London Eye… and finally a week in Cornwall 🙂

So, there are the points. The practicality though is that I’m sitting here, distracting my attention with writing this blog and I wonder all the time – is another seizure going to happen? How am I going to cope? Hmmmm maybe I’ve just said it. How AM I going to cope.

Life goes on and has to go on. I cannot change them. I cannot change what’s happening. Well, I can try – medication and all I’m doing above. But overall once the cards are played, we can’t really change the deal. So we should make the most of it. I’ve got in touch through Facebook with people who care after people with seizures and people who have seizures. So, they all talk about anxiety, but not the same as mine. I’m afraid of seizures while they are afraid of their loves one hurting themselves and not taking medication etc. It’s good to notice that. Also some just live their lives and say they don’t allow the epilepsy to rule their lives.

My pattern at the moment seem to be I’m feeling ok-ish, then especially in the evening my anxiety rises up. so I’m trying distraction techniques. Then the more time passes the better I feel until another seizure happens when I got completely down again. So the main thing is work on the anxiety I think as I can’t really stop them happening.

And a good thing would be to think of our relationship. As it looks like I’m taking all the attention on myself. But really it’s Graham going through the horrible part. He is suffering on chemo and he is actually having seizures. Then not only he feels ill, but also he feels guilty as he can see how it all affects our family. And he needs me. And that thought actually is helpful, that he is relying on me and trust me enough to put literally his life in my hands. So I have to keep it all up and going for him and for the children.

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.