Emotions I Never Knew I had and The WE in place of HE.

What is it about PC that makes it different from other diseases, even other cancers?

When asked  about David’s illness, I say ‘we’ now. We are going to the hospital,. We are going to have the catheter removed on Tuesday. The royal ‘we’ is used a lot of late.

When my husband had skin cancer,  twice,  I said,  ‘David has skin cancer’.  No We! No us!. David.  As though it belonged to him and I was a bystander.  HE HAD IT. WE didn’t!

I have a heart problem. WE don’t.

Why the difference? I could write a long boring essay on the facts, the statistics that I have read, re read and re read again! But I really only know my own reality, my truth.

Why the royal WE? because it is an”US’. We do have this awful heartbreaking disease. Me and my beloved man. Together we are on this journey even though you only read my words. Why? Because I love him. Because we are a couple. Because it isn’t just the good times we share, we share it all. Am I happy about the WE? No, not in a way. I am angry though!

Today I recognize my anger for what it is, I didn’t before, I don’t think.But I have seen it in my clients, those who have lost loved ones to death or a broken relationship. Any kind of loss can bring grief. This horrid visitor to our lives, PC; I use the word ‘visitor because no way am I going to make it welcome and become a permanent part of our lives!, has left me grieving.

My brother has cancer and yes, it’s scary and yes he is going to die. A huge reason to hate cancer. But we, his family don’t have it. We can care for him, me from a distance, we can make sure his life is as good as it can possibly be. From the outside. Of course it hurts and of course we feel for him. But WE don’t have the disease.

When my best friend Mo had lung cancer, the same kind Tony has, I still loved and cared for her. She stayed the strong funny, witty person she had always been. Still applied her make up and dressed well, right until the end.She was the same person but with an incurable illness and it broke my heart. But WE didn’t have it.

There was no royal WE in either of these sad and horrid illnesses.

Illness and disease touches everyone when it strikes. It is scary, unpredictable and usually unexpected. The families of the sufferer become carers, say all the right things. Do all the right things. But ultimately the cancer is in the one person. Everyone is affected to some extent, some more than others but it is the patient who has the illness, the pain the symptoms. Maybe sometimes the sufferer changes, pain can do that. Fear can do that. Maybe they are not able to do the things usually done by them. Family step in and help, they adapt.

But.

When PC strikes, all of the above happens but the cancer spreads emotionally,psychologically to the sufferer and to their partners or care givers. David has changed. I have changed. Life has changed and so has my world. In my world WE have cancer, with or without a little ‘c’. It’s there, every minute of every day.

How cross would Mo have been with me today. ‘Angry never helps Carol Ann’, she would say pointing her well manicured finger at me. ‘It’s a wasted energy and can achieve nothing’. But maybe it can. As the photo says, it protects me from sad.

With Mo as with Tony, sadly we knew what was happening. We knew Mo would not survive as we know Tony won’t either. This disease is still a killer in many guises but as I know, sometimes  it can be removed. It can be killed off.

David is fighting pc, WE are fighting pc and its scary. We don’t know what the outcome will be. We don’t know if he has been fortunate to have had every bit of this nasty, removed by Robotics. We may never really know. We have to wait. Wait to see the consultant. Then wait for the results of PSA tests. There has been so much waiting already.That is all we have for now, maybe forever. I think that’s the biggest difference. This cancer ‘with a little ‘c’ is a gamble. We don’t have a prognosis as such. We don’t know what will or may happen. WE. I repeat, this is US. not David, and I wouldn’t have it any other way, except to take it from him if I could.

Living with fear is something I did as a child. Maybe over the past 27 years, before life soured for us, I became complacent. Let my guard down. Was too happy being happy. Maybe I was smug, I had it all. A wonderful man who loves me more than I deserve. A loving family and living in a wonderful beautiful part of the world, surrounded by my menagerie of animals and a world of wildlife. Doing a job I loved. Yes maybe I was smug.

That’ll teach me!

I need to go back to the dark days. My early life where I learned, at an early age, to be hypervigilant. Watching for the next bad thing to happen. Letting my fear keep me as safe as possible and that wasn’t very safe.

But no, not really. I know in reality that I couldn’t have prevented the past 3 plus years and particularly stopped this latest unwanted guest from creeping in through the back door.

I couldn’t have known so couldn’t have prepared.

I never knew I could be this angry.

I never knew I could hate with such venom.

I have hurt in the past but the hurt I feel now, for the man I love with all of my heart, is huge. Beyond my comprehension.

Helpless I know. I have met her many times before. But before this latest nasty hit me in the face, helpless never stood a chance. Carol Ann told herself off. Pulled herself together. Became logical and with her back straight and her inner strength, took hold of helplessness and threw her out of the way and moved forward.

The past few weeks, watching the man I love go through so much, seeing him weak, poorly and yes, at one time, scared and helpless, trying to stay strong has sapped my reserves and left me lacking. I am tired. Angry. Feeling helpless and sad beyond words. I can’t sleep, listening as you do with a new baby in the house, making sure David is okay. Waiting if he goes to the bathroom, scared that he may have a Vasal Vagal attack  and collapse,as he has done in the past. Trying to pretend to be asleep when he wanders back into our bedroom. Our beautiful peaceful bedroom that has lost its ability to calm me. Lying quietly in the small hours, wanting to cry, shout or scream but pretending, once again to be asleep.

The days seem endless rituals of bathing, emptying bags, checking fluid intakes etc. No respite. The worry is the hardest to do deal with. I have searched for the ‘worry button’ to switch it off but to no avail. Even if the treatment has been successful and the cancer has gone, there may be side effects that can cause distress to the man and to his partner. He may have erectile dysfunction, may be incontinent. Being selfish, as long as I still have David, these things are insignificant but I know they may affect him. That is where the ‘I’ comes back big time. I will reassure him he is every bit as sexy as he has always been to me, every bit a man. If he has incontinence, we will cope. By that time I hope I have regained my ability to make him smile and nothing then will seem as bad. But as yet, we don’t know any of this and so the wait goes on.

Where has the laughter gone?

We could always make each other laugh. Even in the early days of our unwanted knowledge. Everyday, when life was hard, especially over the past few years, David could always make me smile.

Now he looks like I feel. Sad.  Down.

I don’t show him how I feel. I smile and tell him funny things I have seen or read on social media but I am aware that the smile doesn’t reach my eyes.

A little while ago, talking about the future, David looked at me and said.

‘It might not be over yet’

I heard but didn’t, if you know what I mean. I didn’t want to hear.

‘If it hasn’t all gone, if he didn’t get it all, I will have to have more treatment, maybe months of it’ he continued. Like it was a revelation!

I know! I know! I wanted to scream back but didn’t.

At first I couldn’t speak but then heard encouraging words, positive, strong words almost matter of factly coming from somewhere..

‘Okay but we don’t KNOW yet, if we need more treatment so be it. We will face it together and pull through. We will beat this!’

Who said that? was my  first thought.

I said that. It was my voice that seemingly unaware was speaking. Somewhere, deep inside of me Carol Ann was doing her best to push through, just when she was needed.

So, that’s why we think of pc affecting US. It does, we face it together, all of us. Each man with PC if he has a partner, a care giver, they are in it together. It affects both patient and partner in different but equal measures. I call it the ‘couple’s cancer’. It changes us, our outlooks and our lives.For those on here don’t have a ‘we’, then I encourage you all to join the Facebook groups and gain the love, support and strength that I gain from the members, who are becoming friends.

WE, David and I will not become one of the statistics. It isn’t David it is US and always will be.

It is OUR lives that are affected or infected. It is US who go through the pain, the hurt, the fear and the sad. Again, ‘in sickness and in health’.

One day soon, I hope, my old friend HUMOUR will return and that will give me more ammunition, just as it has always done in the past.

In my last blog I said I wished I could unknow what I now know. Un hear what I now have heard.

But Now.

I am afraid of the ‘not knowing’ the next bit. Not hearing the words I need to hear that will affect the rest of our lives.The ‘what if’s’ come back in full force.

I know, some will say ‘never satisfied’. but this is just how I feel. Sorry.

The other things that come with cancer with a little ‘c’. Are muddle headedness, confusion and fear of life itself. At first the muddled headed we laughingly likened to baby brain. Now it’s the same kind of thing for a different reason, not said with laughter and ‘pc brain’ is just as bad.

These last few blogs, have been very low,  sorry. I hope readers can understand my need to write and can always scroll past. Writing is freedom, freedom from the heaviness of being the partner of a man with pc , and a sufferer of the same.

Thanks for reading and thanks for comments last week. xx