Can Someone Tell me Who I am Please, After PC? The Losses and The Lost.

This week brought a new worry, or rather a concern. My health has flagged up some issues and I have had blood tests and am waiting to see a specialist. Just when I thought things were improving, wallop and here comes something else. It’s okay though, because worry , over the past years had become my norm. But I don’t usually become concerned when its me, only when those I love are ill. I think most of us are this way. But maybe it was a wake up call. Recently, I think I was becoming worried, that I had little to worry about! For years I had been where we all on this site,often find ourselves, in the place where illness and worry reign. Two plus years since David’s diagnosis and out the other side but I have only just realised the impact of those years. The expectation of waiting and worrying became who I was. Don’t get me wrong, of course I don’t want the worry and fear or any of the other things that are not right in my world, those that are continuing, not as bad, not as painful and hurtful but the loss is still there.Don’t want any of them.

So today finds me a little confused. A little lost. Over the past 4 plus years, the endless waiting between tests and results, the tests themselves, and the ‘oh my goodness what ifs’ that have now gone, have left me yes, a bit at a loss. I don’t want any of that again , of course I don’t.I can’t really explain it, how I feel. Lost in a different way from the ‘lonely’ and ‘alone’ during my journey with PC, the reason I joined this group. But a kind of ‘not sure where now?’ Not even sure some days of where I am or who I am. I had become the carer to the man I love, my rock. The stronger, at least mentally, of us both. I had found myself doing things that David was not up to doing. He had taken so much away from my everyday life, because of my own health in the beginning of living here in Wales. I had been so poorly, he took on most household chores and when I recovered, he wanted to continue to do them saying we are a team, we both worked fulltime back then so it was good for us both. He has continued to do so much and suddenly after PC surgery, I found it was all down to me. That is not a complaint, just a fact and it was good as it gave me a reprise from  thinking about how life was, the worry, the pain, the hurt and the anger. But only for brief episodes. Now, that part of me feels redundant because thankfully, my beloved man is back to health and I am so pleased for that. So now I can be ……Who??

For those of you who follow my blog, you will know how scared I was. How the diagnosis of PC on top of all the nasty stuff I had endured for the 2 years previous to this, had almost tipped me over the edge. I hadn’t seen it happening. Wasn’t aware of how I was changing. Didn’t really see how much time I had spent, weighed down by the ‘f’ word. I was struggling in coming to terms with a huge loss, an estrangement, of my daughter and grandchildren when cancer with a little ‘c’ came calling. Trying to get my head around my brother Tony and sister Georgina both suffering cancer. Then, like  a bolt out of the blue, the man I love had cancer. We never discussed much of this at home. I suppose in a way, talking about it all made it real and I didn’t want any of it to be real. So we didn’t talk about it. How wise was I, a Psychotherapist who tells clients how important talking about thing  is !!I had become quite introverted. Self absorbed, self focused. Only thinking about one thing, cancer and its consequences. How could I talk to anyone about my terror at any of this. Cancer, death dying. Words that always seemed to go together. Confirmed in my life at that stage, from losing my best friend and my sister and knowing I would lose my brother.This then re awakened other losses, from death or estrangement. I stopped socialising. Stopped work, closed my practice down, very seldom visited anyone and became isolated in my fear. Remember this is only my perspective, how I felt during the that part of the journey none of us wanted to take. No one elses, just mine. David had the cancer and he just seemed to get on with life. Before surgery he acted like there was nothing wrong. I would try, in the early days, to talk about ‘it’ but he refused, quite rightly, to dwell on it. He would say ‘look back over your life, the things you have conquered, survived in your life. We can do this together. With you at my side we will beat this thing’. The he would smile and give me a hug. I smiled back and agreed but inside I was wanting to scream.

Life as the partner of a PC sufferer can be a very lonely place, we didn’t at first tell anyone, only our daughter who lives with us knew. I didn’t feel it right to burden her at first but had to tell her and David made light of his condition to her. So on the outside and some of you will understand this, I acted like everything was okay. I didn’t allow the world to see my worry, our ‘what ifs’ or rather mine. It was a strain, draining and exhausting and today I can see how unhealthy it had been.It continued but changed a bit during treatment, post op and recovery, because people then knew that David had been in hospital, we told those who needed to know and suddenly everyone seemed to know. But I still kept everything I felt to myself, except for this blog. My outlet, my offloading. My admitting pain and fear.

As I have said many times before, cancer with a little ‘c’, comes barging into our lives completely disinterested in anything else happening at that time. For the previous 2 years I had known Tony would not survive. I had lost my sister 2 years before diagnosis, from cancer and here it was again. The ‘c’ word. Almost pushing me over the top and not caring in the least.

Most of us hanker after the past, at times when the present it is not so good. Looking back, things often seem so much better, but not always. I have done this a lot over the past 4 years but I don’t hanker for the pain or worry that has been life since diagnosis, or the pain of loss I have felt. During PC we have tests, bringing worry and fear, results bringing worry and fear and then treatment and recovery, all bringing the same unwanted emotions. I don’t want any of that ever again. But now, it may sound stupid, or strange to say, but it’s as though something is missing. Bit like toothache or loud noises that have gone on for a while. It is only when the pain or the noise stops, that you feel it, or hear it. You don’t at first realise how bad it was , until it stops. I suppose that is where I am today. Not so much family stuff, even though not quite as bad, they are still there. Still hurting, not stopped but changed in substance and appearance. Like having a plaster on a large sore. It is okay unless it is knocked or touched, then it hurts again. So that is ongoing. But because there are no more tests for David for a long time now, no thoughts of surgery or recovery, no worry about any of this, there is a space. Only those of you who have been here, will understand where I am coming from. There is a kind of void. Of course it is welcome, very much so, but it leaves me with a huge sense of ‘who am I?’ ‘where next’. ‘What is this thing that has crept up upon me, and although welcome, has taking my worry and fear of the cancer away, leaving me not sure of who I am. I am no longer a carer, or need to be the stronger of us two. I have in part, lost my identity and need to find it. Fast!

So today I acknowledged I need to find a new role,’ here on the farm’, perhaps the role I had before PC. I have written about how we have both changed, before in a blog, now David has changed back to who he was and I am left wanting. I also acknowledged that during the family stuff, I became unrecognizable. The pain and hurt have changed me and I reacted to situations that I should have stopped to think ,and responded to instead. Should have been the person I know I used to be. On the PC journey, as I have said, I also changed and am now having a problem finding and changing back, or moving forward, once I can find the right direction.

Something else happened today, something I have realised. Because of the focus on family stuff and David’s illness, I haven’t had space, or given myself space to grieve. For my eldest sister  4 years ago, for my beloved big bear, Tony this year or the loss of my daughter and her family, a different kind of grief. How often I have picked up the phone, to ring one of them and found myself having to stop the tears. I went to ring Tony this morning and suddenly it hit me, as though I had just been told, just had that horrible call telling me he had died. The realisation, reminding myself I can never talk to him again, see his smile, hear his laugh, hit me so hard it was like a physical blow. I owe it to him, to the other people I have lost, to grieve properly. I owe it to David and Marie here with me. Most of all when I find myself, I owe it to me.

Grieving is hard, grieving for the living is even harder, than grieving for a loved one who has died. I have not done that since it all happened in 2013. I was too busy hurting, in disbelief, that someone I loved and had done so, all of her life, was hurting me and shutting me out. I was fighting for my relationship with her and doing it all the wrong way. This was evident when I have looked back, these past days and was worse after David’s diagnosis. I had lost so much and was maybe about to lose even more. My desperation came through in a way I regret. But none of what happened should have happened, but it did. Losing Lisa and my grand-children has been the hugest of losses.It is worse because you know they are still out there, living their lives without you. Having birthdays, Christmas’s and you are no part of any of it. That is painful. That hurts beyond hurt.Anyone reading this if they are a parent, will understand this grief.

So there it is, where I am today. For all of you on this journey, I have written a post about looking after him but also looking after you, a few months ago. In March this year ‘Take Care of Him. Take Care of Them. But Firstly, Take Care of You’. I need to take that advice. Make sure you do all the things you need to do and want to do for your man but never lose sight of what you need, who you are. Keep up with friends, go out socially and keep all lines of communication with the outside world well and truly open. Don’t lose yourself, your identity because if you do, the saying below will apply to you.

Thankyou for reading.x

Author: carolannwright

I am a Cognitive Behavioural Psychotherapist and author. I live on a beautiful smallholding near the Welsh coast with my husband, daughter and ponies, dogs, cats and ducks. An wonderful peaceful place to live. I have a Masters in Counselling CBT and run my own private practice where I see a diverse group of clients. View all posts by carolannwright