Category: Loss and lost

 

 

I began blogging back in 2016, firstly to try to explore what was happening in my life and also to make some sense of the nonsense that was my life. That was in June. August of the same year, my world was turned on its head and this page became somewhere I could off load, dump if you like, my terror and huge emotions that came, on discovering that my wonderful husband had Prostate cancer. My first blog about PC was August 26th 2016 ‘Trying to Clear My Head’. Back then I thought it was a death sentence, that I was going  to lose the wonderful man I feel privileged to be married to. For those of you who have followed me on this journey I didn’t ask to take, you will know that everything I write is from the heart. From the perspective of a partner of a man with this horrid illness, not from that of my husband. Today I have made the decision to stop this part of my blog. Of course I will update now and again, David’s PSA tests etc. for readers who continue to follow me but otherwise I am going to revert to my old way and reasons for blogging. I have travelled on this path with David and with the support of the groups and will always be eternally grateful. I have gained comfort, strength, information and love and want to thank everyone who has joined me and for everyone on the groups. I would not have managed to come this far, to have stayed sane without all of you. So Thankyou so much. I have read of other women’s struggles and in some cases cried with them in their pain. You are all inspirational and please keep it up. There will sadly, for many years to come, still be ladies who, like me, feel the bottom has fallen out of their world. Who fight daily with people who can’t understand why they are affected, after all, they don’t have the cancer!!!! But in a way we do. I call PC the couple’s cancer because of the effect it has on partners/wives. As I said, I have noted every step of this journey of waiting, tests, treatment and how it affected me and from private messages, comments and posts, I know I am not alone in having the feelings and fears I had. For some, reading of my travelling along this road, its obstacles, bumps and unsure surfaces, it has validated their own feelings. I showed my anger along with my sadness and this showed my vulnerability and I hope, allowed readers to feel less alone. But now it is time this part of my blog is brought to an end. I am ultimately a  writer, and endings are always so hard.  I don’t want to repeat things I have already told you, over the 2 plus years of blogging, it will all be in my ‘dairy’, the book I hope to have published, telling others how it is for us and hopefully giving some hope to new sufferers and their partners. My bit to help raise awareness and the fight against this destructive of diseases. So with my gratitude, love and thanks, this part of my Sunday blog will end today. My thoughts are with you all. I will continue to comment and continue to read posts from members. Those who have conquered this hell or just  at the beginning and especially those who have sadly suffered the worst outcomes possible. I did ‘become’ my blog, by putting my heart and soul into it and baring myself in openness and honesty. Now it is time I changed direction back to the path I began before PC. My love and thanks to you all x

So I will continue to blog my story as it happens and if you are interested please read on. As I have said, I write as an ordinary women trying to be a good person, good wife, mother and one day again, Nan and friend. Since beginning this blog 2  years ago, I have been both saddened and comforted by receiving comments and pm’s from other social media friends and readers, who have suffered similar things to me. Family stuff that has moved them to write to me and sometimes continued to write. The empathy bringing us closer, in a way, that doesn’t always happen with friends. Some have told me how they feel because they believe I would understand, in a way their friends and family possibly don’t, because I have been where they are standing.  As I said, it comforts me in one way but also saddens me because then I know, that others have sunk to the lowest feelings of sadness that can be reached. Maybe they have suffered loss by death, as we all do at some time in our lives, or been scared or heartbroken and found themselves unable to come back from that low place. But for me, the most poignant stories, are from those estranged from their children, something as parents we find impossible to accept. Many of us have shared our sadness at our estrangement helped each other when we can. Reading my blog, knowing others have the same heartache, helps them.

After last weeks blog and its repercussions, I felt perhaps that my writing is not clear. That maybe people read it not as  I intend it to read. Maybe they see it as completely different to how I see it and write it. I don’t know but I certainly did not write last week or any week, to hurt anyone. Last week I told of my handing out an olive branch and at first believing it had been accepted in good faith. I had written to my eldest daughter in order to let her know how I felt. How much I would and have, always loved her. Although horrid things had been done to me over the previous 5 years, it was me who reached out. I am her mum and wanted to do the right thing or else I would lose her forever.I wanted to understand, to know why she had done what she had done. Not the reason she has told everyone, because that is just not true. I know that and so does she. Or even the other reasons that change with each email. But the real reason. We wrote for a week and in her last email she sounded like she was closing down contact once again, even after she had told me how she missed and loved me. She told me she couldn’t see a way forward even though it had seemed we both wanted that. It didn’t make sense but  because I needed to know that nothing like this would happen again, I needed to know why it had happened in the first place. But she took it as her being blamed, just when I thought blaming and forgiving was not on the agenda. I replied sending her my love, always, hoping she would write back and say I had misunderstood, but no, nothing. Hence last weeks blog.If I had thought, for one minute that we could go forward, that she wanted that as much as I did, last weeks blog would have been so different. But she seemed to read it as something I had written to hurt her. I have never wanted to hurt her. Why would I have reached out, written of my love, apologised for doing anything wrong in the past if she felt I had, if I had wanted to hurt her? I thought she had taken my hand and was willing to work through everything and find a way back to ‘us’. I allowed myself to hope and those hopes were dashed. I feel very sad, no one should be apart from their children. But it happens and some of you have shared with me, far too often.

Yesterday was a very sad day, I have had to look very carefully at what I do next. If I contact her again, or if  I leave things as they are. I had spent the day looking through thousands of photos, yes photos, physical ones, not on a screen . I have a chest full here ‘on the farm’. Animals we have had, places we have lived and holiday snaps. But mostly photos of my children. I found it very sad and admit to shedding a few tears, something I don’t easily do. Everyone thinks their child is beautiful and I am no exception. Lisa my pretty daughter, was  a runner-up in the Miss Pears competition that used to be run every year in the late 60’s.Her Nana Brown had sent inher photo.She was a beautiful happy baby, born of my first marriage. I have been down our memory lane and wondered at how after a lifetime of love, we can be so far apart. Where did the years go? She was always laughing and we were so close. Even after the arrival of my second daughter Marie, it was Lisa I would confide in, share things with. My precious firstborn daughter.My Blessing.

I suppose the wise thing to do would be to just ‘move on’ whatever that means. Leave things be ,but that is not in my nature. I will keep trying to rebuild my relationship with her and my grandchildren, even though others tell me to let it go. Again that is not in my nature.

In general, apart from what I have just written, I  am in a better place now, David is well and my work is good. I do have family stuff, the health of my 2 little aging dogs being one of them but, like them, time is running out and if the PC journey has shown me anything, it is that nothing is promised. I have to try and make this right. Now. Wish me luck.

Thankyou for reading xx

 

 

 

Last week saw me lost. A ‘what now’ kinda blog. Some readers identified with how I felt and made comment or messaged me. Thankyou for your support. But some positives came out of it,building on a lifting of some of the nasties from the past. Or at least I thought they had. As you read, I was looking back over the past few years and feeling a bit redundant, I had lost my role at home and as a person. It has made me recognize that although at times I felt it was all getting the better of me, pushing me to the edge of insanity….it failed. During my life I have had some wonderful things happen to me but like everyone, also some horrid things. Obviously PC being one of the latter. I survived a childhood without love, constant CSA and legacies of these, sent me into depression and left me anxious most of the time. I lost 2 sons, one born sleeping and one to adoption against my will, poor health and broken relationships. But I am still here. Most of the time, grateful and trying to be a good person, helping others , loving my family and caring for rescued ponies alongside my own. Throughout what life has thrown at me, like many, I have been strong enough to bounce back. I think as a child, I survived because I had no choice. After having my first daughter Lisa, my blessing, I had a great reason to keep going and life was good. I loved those years of me and her. I wanted  to be the mum to her that I never had. As time went on our family grew and Marie was born, another reason to keep going. The loss of my sons was almost unbearable and without my daughters… who knows. And then after many broken relationships, and a vow never to be serious in one again, I met David. For the next 25 plus years I was very happy, we were very happy. Lisa had moved away years before but we had a good relationship, strong enough at first to withstand the distance. We visited each other a few times a year, not enough but we had been forced to move with my husband’s work. Something none of us wanted. The years following, from the nasty hoax until mid 2013, were good. We were to have a new member of the family a baby, Hannah, adopted by my daughter Lisa,who was to become my granddaughter. The excitement was unreal. We Skyped and Lisa rang many times each day, keeping me up to date with how it was all going. I did all her paperwork and her written history as she wasn’t sure of facts etc. I had documented on here what happened next and won’t repeat it but after she shut me out, life changed. I missed her so much, cried so much, so many nights David held me while I cried myself to sleep. It was all so unreal. Every morning as I woke, at first thinking it was a dream, then reality hit me as it does in the early days after someone you love dies. This was even worse than that. I was grieving the living. Then, just to add to all the nasties coming our way, PC came calling! I had already started blogging, my only way of family and friends who I didn’t see, knowing how things were,. The truth against lies being smeared around. Then, after PC hit us, that became to The focus for my blog. I needed to do this so much, I still do, my therapy if you like as I live quite an isolated kind of life.

It is hard for  every PC sufferer and carer, as I have written before. It can make you angry, scared and sad. It touches our every minute, every day, changing us into someone we don’t recognize, leaving us feeling alone,hence last weeks blog. It takes up your every breath and if you are already over burdened, it can take you  over the edge. I was often almost there. I know from comments and messages from other partners and wives,that many feel the same. So because of this, and to try to find who I really am again, I intend to write my blogs as a diary and have it published if I can, giving a portion of the proceeds or maybe all of them, to PC Awareness UK.I think it important, that along with facts about this horrid illness, we need to acknowledge how it can affect the wives/partners and caregivers of men suffering PC and not the man only. There are books written by sufferers, but few from the perspective of a wife and none so candid and open.If I had read a book detailing the nasty affects P C has on people in my position and how it can make me feel, if I had read another woman feeling as I have felt, I would not have felt so alone on this journey. ‘PC and The Forgotten Victim’ is on the way. A positive for me to embark on or revisit.Part of finding my way, finding my place if you like, my role. PC has almost beat me at times and last week I was lost but I need to show it that I won’t be beaten,that I am still the strong woman I was a few years ago, before my estrangement and before PC. I am headed back! Slapping cancer in the face on the way!

One of the positives, I think, about my PC journey, is the realisation of our mortality. The sudden wake up call that told us we could so easily run out of time. The losses suffered over the past few years, brought this to the for-front of my thinking,we have both suffered the loss of siblings, a brother and a sister from both of our families.So death has touched us and although David is pragmatic, I will always think of the ‘what ifs’. What if I died and had not ended the estrangement of my daughter Lisa and my grandchildren. What if the truth never comes out and they remember me as the person their aunt,has painted me? She and the boys might never know, that even though she has hurt me beyond hurt and lost me so much, I still love her. I don’t like what she has done to me and my family here I am not sure I could forgive  but I could ‘accept’ all of it if she could just tell me why. Why and how she could have treated me, her Mum, the way she has. One of my favourite sayings is this: ‘He who has a why to live can bear any how’. So if I knew why, I could accept her how. After last week, I thought that now the time was right to make sense of everything. She had been on my mind more than usual for few days, I knew I needed to make this right. Make sense of the nonsense.

With all that in mind, I knew I had to hand out an Olive branch,had to try to make right a relationship that had gone so wrong. As I said, I have documented over the years of how my daughter and sister have hurt me and even after David being diagnosed with cancer, it didn’t stop. At this point I must admit to reacting at this time and not responding. I was at rock bottom and I met pain and hurt with anger, sometimes quite vitriolic, and for that I am both sorry and ashamed. But reading and hearing stories that were so horrible relayed and sent to me by relatives and friends, I didn’t cope  very well. I was hurting beyond hurt and although that is no excuse, it should validate what I did. I verbally fought back, over social media and in the early days, by email. Not every time but it shouldn’t have happened ANY time. I wish now I had gone down to see my daughter, faced her and I am sure she would not have been how she was indirectly. I am hoping and need to believe, that face to face with her Mum, the woman who brought her up with love and honesty, we would have sorted things out. But that was not possible for many reasons.

Since writing last weeks blog, I made a decision to somehow make things right. Yes I felt lost and estranged but I was seemingly the only person who could remedy this. So I wrote her a letter. Now that the perpetrator, of a lot of the nasties, my sister, had left the scene, I thought I stood a chance of reaching the girl I knew Lisa to be, or rather was, before all of this. So I wrote to her. Some on here and friends who know what has happened over the past few years, might not understand my doing this but she is my daughter, my blood and I felt I had to. I expected the letter, sent by email to either be ignored or returned but was pleasantly surprised,when it wasn’t. A very mature email came back to me, written by the girl I knew her to be. It wasn’t a nice letter as it was full of things that just didn’t happen but it wasn’t a ‘stay away from me’ kind of email that I have had in the past. We have emailed for the past week and I really thought this was a chance to make things right. All I wanted in return was to know why she did the things she did. Why she believed such horrid lies; lies that if they had not been as serious, if they had not affected Lisa and myself so much ,would have been laughable.  So far-fetched and stupidly farsicle, I don’t know how anyone would believe them. But she had and I needed to know why. Not to forgive but to accept and move on, whatever that means.

At first I really believed this was what she and I both wanted. I allowed myself to be happy about us for the first time in years. I really thought I had a chance to have my daughter back. Mums and children should not be estranged, it is not normal and is not right. But. Her memories have been rearranged to suit others. She had a lot of stress in the past few years and I believe was vulnerable to someone taking advantage of that. My sister took her chance to alienate her from me. Something she had done when Lisa was a tiny child. One of the reasons I was  glad, she, my sister had dropped out of our lives for almost 40 years. So the this past week,emails kept coming and I was over the moon. I knew it would not be back as it used to be but having her back would have been enough, to start with. But me being me, had to know the ‘whys’. I had to know so that I could avoid risking our relationship in the future. Not knowing why, how could I move forward with her? Could I trust it won’t happen again? I am not sure, all I know is,that to accept, I needed to know why. But the ‘whys’ were not forthcoming. She didn’t want to look back or talk about the stories made up about me, about her and her past as my sister had told it. Eventually it became too much for her I think and she thought it best to stop writing. I have to accept that and have left it, against what I wanted, replying that I love her and am always here but felt like she had slapped me in the face after the early emails were so positive and almost warm.

I am sharing this on here, because,for the first time in my married life, I have not told David any of this. Haven’t told him or my other daughter Marie. I know they would always support me even if they were concerned about my getting hurt again, but I haven’t told them. I have told you and hope you can understand why.

So, life needs to go on and I now need to find my role here and have begun that today. We have a sick pony and I am now taking back the responsibility of caring for him.I am also implementing a new plan of action for the ‘farm’, an ‘order of jobs’ etc that need to be carried out in case we put the house on the market later this year. If we don’t, then they will at least have been done. Taking back control is the only way forward. That will, I hope, enable me to accept how things are with my daughter and her family. She knows where I am and I hope will contact me if she needs me. But I need to move on.

Saying goodbye to the past few years is the slap in face for cancer with a little ‘c’, longtime coming! Life was so good before 2013 and it will be again. So Carol Ann is finding her way back. My PC journey is almost over. Post PC will be a better place to be. I have place photos of those I have lost in my study , including my daughter and grandchildren,to help me grieve. Face the truth of how it is now. I will continue to blog but it will be mostly about my life here ‘on the farm’, my writing and my professional role as much as I can talk about that. I will still write about PC and will try my hardest to raise awareness. I am hoping to start a petition to send to the Minister for Health,asking if PSA tests can be carried out as part of any routine blood test unless the patient refuses. At any age and with any history. We need to beat this and the only way of stopping our men suffering and dying is to get early diagnosis and treatment. Watch this space!

Thankyou for reading x

 

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