Encounters With Death!
Life really does change in an instance. When I wrote last Tuesday things were going really well. The therapy was working, and I was feeling confident, happy and had no signs of anxiety. Wednesday took the wind out of my sails and made me face something that nobody likes to think or talk about. Mortality. Death.
My first encounter with death was when I was 23 and my Grandad passed away. I was devastated. He was my favourite Grandfather, I was his eldest grandchild and the apple of his eye. The day after he passed I found out I was pregnant with my first child. That gave the family something really positive to look forward to and was a huge comfort to me. The next person close to me to pass away was my father-in-law 12 years ago. 8 years ago I received a cancer diagnosis but only thought briefly of my own mortality before going in to fight mode to battle the damn thing. When I was forty I lost my other Grandad. He was 96 and had a great life so whilst I knew I would miss him in my life I couldn't be sad.
2016 is what gave me my fear of death. Not of my own but of losing people I love. In the space of 3 months both my Nans and my husband passed away. It was too much to take onboard and process what was happening, and I became incredibly fearful of losing my children. I wanted to wrap them in cotton wool, not let them out. I knew this was completely irrational and the bereavement counsellor I saw at the time helped me to deal with the pain I was in and let them live their lives. I had a stroke 7 months after my husband passed away and again was not scared about dying. I have a warped sense of humour and can joke about my own death. I talk openly about what I want at my funeral and have even put down what songs I want played to remember me. They are upbeat, and I just want people to have a party when I pop off. What did scare me was the thought of losing another person I love.
Last Wednesday evening I took a call from my mum to say my Aunt was in the intensive care unit in Essex. This was totally unexpected. She had been unwell at the end of last year when she was taken to hospital as having difficulty breathing. During the current pandemic this was a huge worry, but she was informed she had a hernia pressing on her lung and would need an operation but nothing more sinister. She has been awaiting a referral since November. Wednesday night we found out it is not a hernia but one massive tumour and a second smaller one in her lung. As of this morning it has been confirmed it is cancer. My Aunt battled and successfully overcame breast cancer 21 years ago, so this is a huge shock for the whole family.
As my parents were both in the Navy the majority of my family do not live locally, but we are very close-knit. Due to lockdown to make up for the lack of visits last year we had weekly zoom quizzes to keep in touch which were great fun. I have yet to meet my cousin's baby who is now 7 months old. The closeness I have with my family has always been there. When I was younger my brother and I would spend 2 to 3 weeks of our school summer holidays at my grandparents, so it was always a home from home for me. I was always extremely close to my Aunt. She has no children of her own but has been very important and instrumental in my life. She was the one I could talk to when my parents "didn't understand" the hormonal, knew better than everyone teenager. I would often go and stay with her on my own, and we would go out shopping or to concerts, shows or meals, things I never did with my parents. I could also confide in her about anything.
The night my mum called I couldn't sleep. I was in shock. That shock turned to anger on Thursday as we received updates on my aunt's condition. Due to lockdown she can have no visitors. The information we are receiving is minimal and very frustrating. As a family we have really been through it in the past 4 years and this just added to my anger.
I was angry that yet another family member has been misdiagnosed and not given thorough tests when initially presenting with symptoms. I was angry that I can't comfort my daughter who is so distressed as her Grandmother is also currently battling and undergoing treatment for breast cancer. I had no answer for her when she asked me why is this happening to us, why is life so unfair. I was also angry as my mum is so upset she can not be with her sister at the worst possible time. I was angry at everything but didn't know where to direct it.
That night I had to host a zoom meeting for my group therapy session, so I did my usual, buried my feelings and put a smile on. Although the session was really successful I felt exhausted at the end, pretending I was fine and the floodgates opened. My son must have heard me crying, and he came into my room. He asked me what was up and in a snotty teary way I ranted about how crap life is. This was totally unfair of me to put this on a 16-year-old but he astounded me. He gave me a hug and said "yeah we've had some crap mum, but others have it worse". He went on to comfort me and actually spoke more sense than most adults I know.
My son amazes me. At 16, he has been through and lost more than most adults my age but his resilience and matter of fact attitude is really rather humbling. What was I doing ranting and raving about things I have no control of when this kid can take all the awful things he's been through in such a short time, on the chin. I am so proud of how my son reacts in the face of adversity, and he really has inspired me. After his dad passed away I worried he would go off the rails. I need not have. He has more sense and is more level-headed than many I know, and he is the one who keeps me on the rails.
Friday was my aunt's birthday. I felt incredibly sad as she is alone in the ICU, but I knew I couldn't dwell on it. I needed to go to the office to pick some bits up. It is the first time since November I have ventured over there. Fortunately it was a lovely sunny day so the ferry and train journey were actually really enjoyable. A journey I used to hate doing was a welcome break in what has been a stagnant few months. On the way back I took time to appreciate where I live. I spent ages just looking at the water; it really is rather calming. It made me think long and hard. I cannot control when I or the people I love die. It is the one thing in life that is a certainty. What I can control is how I will be remembered. What is the legacy, if you like, that I want to leave behind.
Material possessions matter not. What I achieve in work will not be remembered. What matters, is knowing you were loved and those close to you know you loved them. I have told my children every day of their lives that I love them, although I could not remember when I last told my parents or extended members of my family. I have always said life is short, and we need to make the most of it. This doesn't mean by necessarily going anywhere but making the most of what time we have on this planet and appreciating and making the most of those we love. Tell and show the people close to you how you feel. Resolve differences, hold no grudge and have no regrets. If I can get to the end of my days knowing I did everything I could to ensure my loved ones know what they meant to me then I have lived a full life.
My Aunt is an incredibly strong lady and whilst she has a huge battle to come I know that with the whole family to support her she will give it all she can. I have spent the weekend writing letters for when my time comes. I have also made sure my family knows how I feel about them now. My brother reached out to me before Christmas and after an estranged relationship for many years he is trying to build bridges. I was reluctant to let him back into mine and my children's lives but tomorrow is not promised only today, so we are starting again with baby steps. I can not live in fear of something that will ultimately come to us all. I can live each day as if it's the last. Look forward to the future but live, learn, laugh and love right now.
Well it's been 10 days since I put fingers to keys and thank you if you took time out to read it.
When I wrote that first piece I was back to my lowest. I felt very despondent and alone. My thoughts were extremely dark and unhealthy. No matter what life has thrown at me I have always had my humour but even that abandoned me. Laughter is so important and I seemed to have forgotten what mine sounds like.
November always used to be such a fun month for me. Bonfire night, birthday celebrations and Christmas not far away. I was always like an excitable child at this time of year. We would have Bonfire parties with our neighbours and good friends. They were always so much fun for the children and grown ups. We would BBQ, the children would play and the adults would talk, laugh and sing badly. The guys would sort the bonfire and let off the fireworks (apparently that's a man's job along with the BBQ 🙄) - very happy times indeed!
My husband always had a thing for fire and fireworks. He wasn't a pyromaniac or an arsonist (although he was caught as a child trying to build a bonfire in his Nan's front room). Normally so chilled out, relaxed and quite reserved, he wasn't one for getting excited about Christmas or birthdays but he did love Bonfire night. So it's quite ironic that this is the day he passed away.
He became ill in February 2016. Just pain in the right side of his chest he didn't grumble or complain but he did take himself off to the doctor which was unheard of for him.
He was given an x-ray, painkillers and sent home. As the weeks went by he was getting worse, the painkillers did nothing to ease him. Back to the doctors, stronger pain killers, still they didn't help. More weeks went by, I was incredibly worried he was getting worse. One night at the beginning of April the pain was unbearable for him, his skin was grey and his lips were going blue. I called 999.
He had 12 further emergency admittances by ambulance from April until the end of May. He was initially told he had an infection and was given co-codamol. He was mis-diagnosed again in the beginning of April.
I went into fight mode. I knew this man better than anyone. He was ill and in so much pain, he was on a morphine driver and about to be discharged from hospital with no answers. I logged a formal complaint with the CEO of the hospital. (I also refused to leave the hospital until I was heard). It worked! They phoned the following day. There had been an oversight, somebody had not read his x ray correctly. An emergency same day appointment given. After numerous scans and tests we saw a Respiratory consultant who finally gave an opinion on what it could be. Cancer!
A shock but finally we were getting somewhere. He could beat this. I had 3 years previously and he was much stronger than me. We just needed to get results and get a plan of action.
Again the weeks went past, the pain couldn't be managed at home so at the beginning of May he was admitted yet again. He came home for our son's 12th birthday then back in hospital the next day. They had him on some pretty heavy pain killers, morphine and ketamine yet nothing was giving him relief. Things got so bad I moved into the hospital. A camp bed in his room was where I slept for nearly a month.
Why is it the worst memories are the ones you can recount second by second, blow by devastating blow? I can remember every detail of that day. The day we were told he had Mesothelioma (a terminal asbestos caused cancer). The day my world changed forever.
We had met 22 years earlier. I was a guarded 20 year old who had been through an extremely abusive relationship for 7 years and was in no way looking for a new one. He was gorgeous! Tall, dark, handsome and oblivious to it. He had no idea of the reaction he would get from women when he walked in a room. He had the most beautiful blue eyes and his smile could make my insides turn to jelly (really cheesy I know, but so true). We got on amazingly. We would sit talking all through the night. Laugh, joke and wind each other up in the funniest ways. Every night after work for about 3 months he would ask to take me out. Every night I said no. On December 8th 1995 that changed and we decided to give it a try.
It worked! We were just a normal couple. Happy, in love and having fun. He proposed about 9 months later. I said yes but we never set a date. We didn't need to. We loved each other. We were happy as we were. The kids came along, we owned a house, we both had good jobs. Life was good.
I loved our little family. I also looked forward to the future when the kids were grown and we could enjoy time together again. In the blink of an eye all of that was taken away. In the length of time it took for the consultant to give the diagnosis, our future vanished. I was destroyed. My strong fit gorgeous man was dying.
I don't think I've ever talked to anyone about how I felt that day. So many feelings and emotions. I felt that I had been picked up, spun round and dropped on my head. I didn't cry at first. I think I was numb with disbelief. In total denial. I was not ready to accept there was nothing they could do for him. I was not prepared to lose the man I loved, the father of my children, a man who still had so much life to live. I had never given up or quit on anything before and I certainly wasn't going to now. Fight mode kicked in again.
I didn't know what to do. All I could do was hope. Hope for a miracle, a chance, anything. The consultant mentioned a trial, yes, hope! It was being run by Guys and St Thomas hospital in London. I would have to move up there for the duration (several months) but that was ok. He was from London. All his family were there. Yes! Finally a solution. My mind was running at a million miles per hour. (I cannot even comprehend what was going through his head). Before we left the hospital that day I had already mentally packed and had it straight in my head what we were going to do. That was so much easier than trying to process the other outcome.
This was going to work! We were going to beat this!
He needed chemotherapy to slow down the disease as they wouldn't accept him on the trial if it got beyond a certain point. We just had to be patient and wait. And wait! And wait! The weeks dragged on. He was in so much pain. It had already broken 2 of his ribs. He was on so many heavy duty drugs but nothing touched that pain.
We were advised by the hospital that if we wanted to get married we needed to do it ASAP. A special licence was granted and in June we were married in his room at the hospital in our jeans and T-shirts, with our children, family and my best friend there. It was perfect! The nurses had put banners up and came in and threw confetti. The dinner ladies bought us a cake and a bottle of wine and the consultant bought us our only wedding present. A set of Mr and Mrs mugs. It didn't matter that I didn't have a dress or a party. All that mattered was us. We spent our first night as man and wife in separate beds which did make us laugh. Despite what was happening we somehow managed to keep our sense of humour although it got more warped than usual on occasion.
He was finally allowed to come home with The Rowans Hospice taking over his pain management. They were amazing. I can honestly say I would not have survived without them.
Chemo started at the beginning of July the first of 6 doses. I still don't know why it took so long to start. If only they had started it straight away.! We knew the trial was our only hope and even if accepted there was no guarantee of success. But hope kept us going. He was taken in to The Rowans for pain management. It was during the second stay he had his third round of Chemo and was sent for a CT scan. The results were devastating. He could not be accepted for the trial. They wanted to try radiotherapy to give us time but all hope had gone. After I left him at the hospice that night I cried like I have never cried before. I felt physical pain and was violently sick. I wanted to scream but the children were in bed, I couldn't wake them. Oh no! How on earth do we tell them? I have never before or since been so scared. I was sitting alone in our house. Everything looked normal but nothing was. The next morning I opened a letter. It was dated the day before the scan. He had been accepted on the trial. I tore that damn letter to tiny pieces, burnt it and never spoke of it to him.
He had radiotherapy several times. Another scan confirmed it hadn't worked and I think that was the point when he accepted what was happening to him. This strong, beautiful courageous man broke down and sobbed. Not for himself but for our children, his mum, our family and for me and all I could do was hold him. I felt utterly useless. After that he declined quickly. He went back to The Rowans and on the day of our eldest child's 18th birthday he begged the doctors to end it. He couldn't take the pain anymore. He was exhausted. With no hope he had nothing left.
They sedated him just under 2 weeks later and on Saturday 5th November 2016 just as the fireworks started the man I loved passed peacefully away.
We have just had the fourth anniversary. So why after four years has this year been so hard? My daughter said it was harder for her this year than any other due to what is happening in the world and in part I have to agree. Since last November I have had my first relationship since losing my husband, it started so well and recently ended so badly. I've been through a change in my work environment (like many others) to a complete change of job and with a few hiccups in my home, health and family, everything has snowballed. I cannot wait to see the back of 2020.
After sending my first ramblings I opened up to a friend, I held nothing back (this is still new to me, telling people how I honestly feel, not just pretending to be ok). He was shocked and saddened to know I had been feeling this way. Even when he last saw me two days before lockdown when we were drunk dancing in my kitchen he had no idea. I hid it well. I guess I am tired of hiding it now. It's exhausting pretending you are ok when you really are not. I'm a pleaser and a fixer by nature and I don't want to worry people or make them miserable with my troubles which is why I keep it in and let it fester. Although very unhealthy.
I have made a plan for the next two weeks. I am lucky enough to still be working so keeping busy isn't an issue. I am getting my daughter's old bike and this weekend I will be wobbling around the local parks and cycle tracks (I may need stabilizers, it's been about 28 years since I last rode a bike). I have lost nearly a stone in weight in the past month, not through diet, and I am determined it will stay off.
I have also started to write down everyday 2 positive things from what has happened that day and when I feel low I look at those as a reminder life is not all negative.
One of my favourite songs is November Rain. It played on the radio today whilst it was extremely miserable outside. The song holds many good memories for me, as well as being played at my husband's funeral. In many ways it's such a sad song but there are two lines, 'Cause nothin' lasts forever. Even cold November rain. I smiled as it played thinking of good times and the irony of how cold and wet it was outside. I am taking the positive from those lines. The bad times won't last forever and the weather will eventually improve.