Wonderful things

Sometimes in the midst of normal life, just sometimes, something truly wonderful happens. It could be the sunshine pouring through the curtains after a downpour, the news that you’ve been waiting for, the first smile from you new babies face, maybe the sight of the person who knows the tune that your heart plays. But if we look hard enough there are beautiful things around us every day. Today, sitting in my little garden with the sun shining and not a cloud in the sky it’s hard to imagine that there have ever been days that I may have been unable to see the wonderful things. But there have. Five years ago, working in the oncology department of my local hospital I stumbled across information that would change the lives of my family and I forever. I diagnosed my mothers terminal cancer. I put the pieces, that had gone unnoticed for the previous 21 years, together. The eight weeks and three very short days that followed are a blur of appointments, tears, morphine home care, and agonising cries of pain from my mother. But even in those dark days there were wonderful things that happened around us every day. My mum had the strength of … Well, someone very strong, let’s put it that way. She wasn’t immediately sick or bed bound. That only came in the final two weeks. As soon as she was diagnosed she vowed to “take this Cancer head on and fight it”. I knew in those very early few days post diagnosis that this would not be an option, her Cancer had metastasised from her pancreas to her liver and further afield. Palliative care would be all that was offered. I was all to aware of this fact due to my experiences within my career in medicine. But I had to wait for her consultant to advise her of this. It wasn’t my place, and so I sat nodding in conversations, unable to deliver the news that her efforts would be best spent in treasuring the final months with those dear to her. I remember the day of her consultation with the oncology team. She dressed in her prettiest of yellow dresses with matching jewellery. I stood behind her in the mirror, watching her strong yet hopeful eyes.

Will I do ? I thought I’d dress to impress and show this doctor that there’s fight in the old girl yet.

Hardly an “old girl” at only 55 I thought. I choked back the tears as I told her she looked beautiful. It felt wrong that I knew the outcome of today’s appointment before we’d even attended. But I think there may have even been a tiny bit of hope inside of my crumbling heart too. Hope that they may have been able to offer her something. But still, her hope and her strength astounded me. The kind but extremely frank consultant, whom I knew well, delivered the news that in her case they would only be able to offer her palliative chemo, the odds weren’t great, investing 8 weeks to only gain a few extra weeks of life at best, and you’d need to be in the “lucky” 20 % to achieve such a return on your final weeks of life. She made an instant decision that it wasn’t for her. She had bravely decided to let death take hold of her. The hope drained out of her pretty blue eyes. My poor beautiful mother. If I had have been able to trade places with her at that moment I would have. We were given 6-9 months as a guideline and that was pretty much it. I remember spotting the receptionist giving our family a sad look as we left the building, another that no doubt knew the fate of my mother before she did. She continued to work as a foster carer throughout the following weeks. I had previously been a qualified foster carer so her agency asked if I could whiz through training again to provide support to my mother and step father for “the end”. I agreed. I was put on compassionate leave for the following four weeks. Even I didn’t really know what to expect at this point. I don’t remember giving much thought to the time we had left. With not working I wanted to be at my mother’s side every single waking moment. I remember having night terrors in those early weeks, waking soaked through and screaming out loud in the dead of night. I eventually stopped sleeping for more than a couple of hours at a time and began functioning on adrenaline and strong cups of tea. Mum usually held a big summer bbq and this year was no exception. I had begun staying at hers overnight within a week or two. Life at home was growing ever more strained and I didn’t want to waste a moment without her. The night before her Summer BBQ I remember asking her if she wanted to go ahead with it.

Baby girl, if you think I’m going down without a party or two you are wrong

I had my answer. That night at 11pm with the rest of the house sleeping we crept out to the supermarket to buy everything for the party. I can remember her just aimlessly chucking things in the trolley, without much thought or concern over price. I kept quiet and tried to take control of the trolley, she wouldn’t let go, then it became clear why, it was holding her up. We prepped all day for this party, and then we showered and begun doing our hair and make up together, a moment I will cherish forever, and thankfully a moment that she let me photograph. We had a glass of bubbly each and we laughed about when I first started wearing makeup and what I looked like. And there right then were one of those wonderful moments, us laughing together until it hurt, recalling funny times, which were almost always at my expense may I add. I put my arms around her shrinking shoulders and knelt beside her and we sobbed and howled the house down, shaking and not letting go of each other. We were really going to lose one another, realisation had begun to set in. We photographed this night more than any of the following weeks. There was a fantastic turnout. We partied until the sun literally come up. With some of the partygoers sleeping in tents in my ‘ vast garden. I remember my mum drinking champagne out of the bottle with her arms up in the air, singing along to her beloved Rod Stewart’s songs with those closest to her. A night I shall never forget. She named it her life party. Those present agreed that we would host a party for her every month that she lived. Little did we realise there would only be one more life party. That night she revealed her bucket list and her wish to raise awareness for the early detection of Pancreatic Cancer, something I still do in her memory. We had already been in contact with local newspapers surrounding her misdiagnosis over the previous 21 years and this was now an international story and was all over the TV and Internet. In the following weeks we were supported by everybody around us raising vital funds for Pancreatic Cancer UK. My beautiful Mum, was terminally ill, with only months of life ahead of her and although she wasn’t allowed to fight her beast growing on inside her, she devoted her time to still helping others fight their beasts. She battled on in a way that was truly inspirational, and in a way that gave me, and still gives me, a perseverance to keep on striving for the things most important to me. By late September Mum’s condition had begun to worsen, some days she was okay, and she pottered around her house doing chores as if nothing was wrong, and on other days she had no energy at all, and she would roll around the floor with stomach and back pains. The “monster inside her tummy” had begun to grow. She was sleeping less throughout the night, constantly thinking of the coming weeks or months. She still continued to foster her long-term foster child, and my sign off as her backup foster carer was almost in place. It was still hard to visualise that my mum was going to die.  Some days she looked so well. She decided to renew her wedding vows to my step father and the date was set for 9th October. I returned from holiday on 28th September and drove straight to her house. She had contributed to my holiday as a birthday present, and was adamant that I should still go. I reluctantly agreed to do as I was told, thinking that there may not be many more opportunities for me to be bossed around by her.

I am fine, I have months left, nothing will happen to me. Please go and enjoy yourself. There will be so much time for you to be sad, once I’m gone, but not now

We spoke on the phone daily, but I noticed that the conversations become shorter. Even in the Canaries, my mum’s story had hit the newspapers. It was everywhere. She certainly was doing her level best to bring about awareness of the need for an earlier detection of this unforgiving Cancer. I needed to get home. As the plane hit the Tarmac at Gatwick I knew that this was it, the slow decline into life without my best friend had begun. I rang the doorbell, and over the chimes I could hear the cries of pain coming from my mum. My stepdad answered the door.

Thank goodness you are here, I don’t know what to do, I just don’t know what to do.

She lay on the front room floor writhing in pain. She was sobbing. Up until this point there had been no need for any help, but I couldn’t bear her being in this much pain. My sister arrived and we managed to get our frail mother upstairs to shower. She didn’t have the strength to stand. She had deteriorated so much in the time that I had been away. My sister carried a chair from the garden and placed it in the bath. We managed to get her into the bath on the chair, and she let her two daughters wash her.

I’ve lost every inch of my dignity now, no one should have their daughters washing them at this age.

Somehow we fought back the tears, and swallowed down the sobs that were rising in our throats. We gently dried her thinning skin and she collapsed onto her bed. She fell asleep. My sister and I didn’t share any words. There didn’t seem to be any need to say anything. A day or so later we took mum for a consultation with a specialist in end of life care. He informed her that some of the things on her bucket list were simply not possible, due to the stage and severity of her cancer. Mum was to be admitted to hospital to have a pain block the following day, surgery to kill the nerves off that were laying underneath the head of her pancreas. This way she would have no feeling from those nerves, ever again, but it may also get rid of some of the pain.

Babe, I’m whispering so no one can hear me on the ward, can you come up and wheel me outside for a sneaky cigarette?

It was 7:30am, and I’m now frantically chucking on clothes and rushing to the hospital, on a mission of mercy for my lovely mum. You know that things aren’t great when your consultant basically tells you the smoking cessation is a pointless exercise. I’d relaxed a little the last few days with mum being in hospital, and consequently I’d been out with close friends the night before and had a few drinks, for a small blip in time I had forgotten the pain of my daily life. I approached her room on the ward, astounded that she had managed to get herself out of bed and dressed. In hushed tones she told me where to find the wheel chairs. I snuck out and got a wheelchair. We were both giggling like school children, doing something naughty. I scooped her up and got her into the wheelchair and we quietly escaped the ward, with the receptionist giving us a cheeky nod and a wink as we escaped. We sat outside in the morning air smoking together.

When I’m …. Well, gone …. There’s something I need you to do for me. I have something in a box next to my chair in the front room, I need you to give out the things inside.

We had never really spoke of the future. Again I was baffled at her strength. I think my mother had accepted her fate and she was now putting things in place for her beloved children. That day we did a little internet shopping for her up and coming vow renewal. She ordered a beautiful dress and shoes, and accessories to match. She had naughtily written down her joint account card details. My step father didn’t see the fuss in buying a new dress etc, but I guess she wanted to, so she had a plan to get everything ordered and sent to my address ahead of the wedding and he would be none the wiser. She was as cheeky as ever, perhaps there was life in the “old girl” yet ! The doctors agreed to have a syringe driver installed. Her meds would be stored in the driver and fed to her automatically by the syringe in her arm throughout the course of the day. This would help keep the pain under control. She returned home the following day. We had put my spare bedroom furniture up in my mum’s conservatory, and both her and I would sleep together downstairs going forward. She would be able to see her pretty garden and be able to get up and about when she felt well enough, without having to battle the stairs. We had tried Hospice at Home but my step father didn’t like strangers being in their home, especially at such a personal time, so we had agreed to share the care between the two of us. It remains something that I am so glad that I was able to do for my mum. Mum didn’t seem to get on with the syringe in her arm so this was quickly removed, and I was back to administering her hourly cocktail of drugs. It had become increasingly difficult to get mum to eat, she was now unable to break down foods in her gut, so the aftermath of dinner almost wasn’t worth the agony, but with this became an increase in sleep and a dramatic decline in energy. She was fading too fast, my beautiful mum with her infectious laugh and big dimple filled smile was shrivelling before my very eyes. The following night a group of us were having dinner together at Mums, friends and family, we sat on the floor and in chairs in the conservatory with her, reminiscing over old times, funny stories. We begun listing our top ten favourite songs of all time and took it in turns to play our favourite songs. We all sang along, laughing and drinking wine together. It’s amazing how such devastation could turn something as a simple night like this with no frills into one that I know we will all cherish forever. Mum seemed fairly pain-free on this particular night and you could see the joy in her sore eyes. I often wonder what my darling mum was thinking at those times. We didn’t speak a lot about her feelings, perhaps she found them too difficult to share. She said she wasn’t scared though. But to know that you are going to die, that those you love will carry on without you, it has always bothered me that she was alone with those thoughts. The next evening after settling Mum following her last round of visitors for the day there was an unexpected knock at the door. I went to answer it and saw her GP standing in front of me. I let him in and took him in to see mum. Only family were at the house at that time and mum was sat up in bed chatting.

Hi Kate, I’m sorry to disturb your evening. Is it ok to come in and have a chat?

I tried to usher everyone else out, but mum waved her hand for everyone to stay. The Doctor sat down. He explained that he’d been on a conference in Oxford but had driven back following some urgent results that had come in before the surgery had shut that evening.

You see, the liver scan that you had three days ago has shown that the Cancer is far more aggressive and advanced than we had first thought. It is fair to say that you really now are in the final stages.

Mum gasped, and tears poured from her eyes. I held her shaking hand. The doctor went on to explain to us all what this news meant, and how mums condition would be likely to deteriorate over the coming weeks. I don’t recall the conversations that followed this. It remains a blur. The only thing I do remember is the doctors response when I asked him if I should return to work or apply for another sickness certificate.

Now is not the time for work my darling, you have several weeks if you are lucky, you must stay with your mum.

No one else had heard my question or his answer as I was showing him out. I was grateful of his honesty. The following day my cousin arrived from Australia. Mum had raised my cousin for 15 years, they were closer than you could imagine. We had kept her return to the UK a secret. Mum was overjoyed to see her darling niece, something I guess she never thought would happen. We managed to get mum out of the house for a trip to the pub to see her friends. We had thought of it as a dry run for her vow renewal that was only two days away. It was hard going, as quickly as we dried mums hair she was running with sweat again and her makeup wouldn’t sit on her frail skin as it once had. We shared a relatively pleasant day out, but the stares from others around us that had obviously read my Mums story were too much for us all. That night we held a fundraising quiz night in mums honour, mum was too sick to attend.  The fundraiser was a huge success and again I was astounded by the support of those around us. My cousin and I shopped for mum that night, buying luscious ingredients to try to entice her to eat. We collected and paid for a wheelchair from a local store, as the NHS were unable to supply one to us. I’m still in shock about this myself.

The day of Mums vow renewal had arrived. My closest friend arrived to give my mum a pedicure, another friend had kindly offered to do her hair, makeup and the Wedding photography. Another friend had arranged for his work to supply a top of the range VW to take mum to her wedding. Remembering this day is hard. So many acts of kindness fill my memory of this day. But seeing my friends that had paid us a surprise visit from Somerset topped the day. I hadn’t seen my friends for nearly four years. My little brother held my mum up for parts of the service. This was really happening. I gave mum her medication throughout the day. She was tiring, but tried to last until the evening. We took her home at around 8pm. She seemed so overjoyed that those closest to her from as far as Australia had come to share her day.

The next day my mum faced her dreaded first goodbye. My cousin was due to return to Sydney. With my mums end forever nearing, there was never going to be another goodbye. I still wonder if there is any comfort in having any knowledge of when a final goodbye would occur. We had that to come, however my cousin and mother had their chance to share final goodbyes, final words, to study one another’s faces one last time. She slowly gave up after this night. I had pretty much moved in to her home by this point. My husband and I were splitting up, no one knew, we had agreed to keep it a secret until my Mum had passed away, something that I had shelved for the time being. But as mums life began to slip away before my very eyes I knew her passing wasn’t going to be the only devastation that I would be dealing with in the coming months. I would be facing a divorce without the love and support of the one person that I would need more than ever. Mum had been booked in to our local hospice the following day to try to get her pain under control. Although she was in pain she was still occasionally up and about. She called my mobile at 5:30pm

Hun, are you coming for a sleepover tonight again, can you bring your nail varnishes and paint my toenails ?

I had just finished my last home visit with the fostering agency, to enable me to support them with their foster child when the time was right. I packed an over night bag ensuring I’d remembered my lotions and potions to give her a pedicure. When I reached my mums house she wasn’t well at all. Kneeling on the floor and her body slumped onto the bed she was crying out in pain. I began rubbing her back and she was violently sick all over the bed. I hadn’t seen her like this before. She was yellow, her eyes bright yellow, the jaundice was out in full force, and I knew this wasn’t good. That night I spent washing bed sheets and administering more and more morphine. She had a few hours that she was nearly pain-free but she wasn’t exactly coherent with the opiates coursing through her body.

Some bloody sleepover this has turned out to be, you didn’t even get to paint my trotters!

Her humour was still there, we smiled at one another. I managed to settle her into sleep and I literally curled up on the end of her bed listening to her breathing, waiting, waiting for a gasp or something, I remember not being scared, but feeling like I was drunk, “cracking on” with it all, “keeping busy”, but at this second with the inevitable ahead of me and no one to hold my hand I began to feel extremely lonely. I woke alarmed with screams so loud they’d have woke the street. I ran and woke my step dad. Mum was in awful pain, I couldn’t give her any more morphine, even though she was screaming and begging me. We called the hospice. I needed some help, my mum shouldn’t be in this dreadful pain. The hospice agreed for mum to come in earlier than scheduled. I began packing an overnight bag for mum. I knew when I attempted to pack her cigarettes into her bag and she told me she wouldn’t be needing them, that this was it. I put her slippers on and a dressing-gown around her shoulders. As she stood she looked as though she were ninety years old, my poor beautiful mum, that was once so full of life. We ushered her out of the house gently, as we got to the door, she looked back at her beloved house.

Get me out of here.

She wanted to drive along the seafront. My stepfather reminded her that due to road works it would be a bumpy ride and would be painful for her. She didn’t care, she demanded that we drove this way to the hospice. Growing up in a seaside town we had spent a vast amount of our time on the beach, with some of my fondest memories of my family being days out on the beach. I sat behind her watching her eyes in the wing mirror, wondering what she was thinking. The tears began rolling down my cheeks. It was nearly 7am, and the rest of the world were rising, getting ready for their day ahead. I was envious of anyone that didn’t have to face what we were going to have to face today. I wanted a normal life with my family. I wanted my mum. We sat in reception at the hospice. Mum couldn’t even hold her head up as she lay her head on my stepfathers shoulder, shaking and crying in pain. How on earth had this happened in the last two weeks? They led mum to the stairlift in the hospice. We followed up behind her and were shown to a beautiful room overlooking the garden. The hospice was essentially two houses that had been knocked through to make one large hospice. The nurses helped to make her comfortable and to get her into the state of the art bed. A familiar face arrived in our room. I knew the consultant that worked at the hospice and I was so grateful to see her kind face. She helped to settle mum and to get the pain management under control. The consultant spoke with us as a family about “the end” and the part that the hospice would play in that. She explained after examining mum that this was “it”, they would like to get mum’s pain under control over the weekend, and then she would return home to be cared for by us and to die with her family around her in the comfort of her own home. The nurses showed some massaging techniques that I could do to help comfort mum and to ease her pain. My sister arrived, and my brother was due to be here within the hour. as it approached 2:30pm I had to go, I would be looking after their foster son tonight and I needed to be at home for when he got home from school. I was now so tired, so worn, and I needed to recharge my batteries. A bath and an hour or so in front of the TV and a hot meal was exactly what I needed. I leaned in to cuddle my mum, I kissed her on the cheek and she looked up at me.

I will be back later on honey. Try and get some rest. I love you.

My stepdad drove me home. I was woke by my husband. Both my foster-brother and I were asleep on the sofa. He wanted to go and see my Mum, but I was confident that she would be resting and I wasn’t really sure if I were allowed to take my foster-brother to the hospice. I said that we would go in the morning. I put my foster-brother to bed and we settled in for the night. We had been sharing different rooms for the past two weeks, but this night neither of us wanted to sleep alone. I drifted off to sleep with my phone by my side, exhausted, physically, mentally and very much alone.

Wake up, wake up, your phone.

I answered, it was my brother, mum had fallen and the hospice had said that we all needed to go, and to go now ! I ran into my foster brothers room and began trying to dress him and carry him half asleep down the stairs. My husband was starting the car. I don’t know what I was thinking, seeing, feeling, I have no memory of this at all. We arrived at the hospice, it was 12am. The nurse answered the door almost before I knocked. She just stood there, and she took my hand and shook her head. I collapsed onto the gravel and cried silent tears until someone picked me up and took me inside. My mum, my best friend, the other part of me had gone, and I wasn’t here to hold her hand and make her feel safe. She had died alone. I lay with her for the following four hours. We all did.

Nearly five years on and lots has changed for me. Ok, everything has changed for me. The only constant being my little brother and sister and a handful of friends from that time. It still remains a very traumatic time in my life, naturally, I am sure you will agree. I carry on raising vital funds and awareness for pancreatic cancer, and I am passionate about my mum’s story, hoping that if only I can help one person to reach an earlier diagnosis then my mum didn’t die in vain. I have decided that I want to do everything I can to help others and whilst I have moved out of the world of medicine and back into insurance in the City, medicine is still something that I am extremely passionate about. Last year, after meeting an extremely inspiring individual I decided that I was going to embark on a degree in Psychology and Counselling. I started this in October 2014 and I am now approaching my second year.

Running has helped to channel my anger, my pain and encouraged me to dig deep to find the courage and strength that I inherited from my mum. I’ve run in the snow, the ice, the rain and heat, sometimes with tears streaming down my cheeks. Running was mine, it was something that couldn’t be taken from me. I have run several half marathons and this April I completed my second London Marathon in my mum’s memory. It has literally been the medicine to my soul, it has calmed the pain that was raging through my body, and the long runs ensured that I was reminded of how strong she had made me. I continue to run, and I think I always will. A recent injury had left me unable to run for 6 weeks and I felt as though the bottom of my universe had fallen out. But I am getting back out there, eager to train for my third marathon and to achieve another personal best in my mum’s name.

As I’m sitting here tying up the final pieces of this blog underneath my twisted willow tree, I’m watching two lilac butterflies dancing together in the breeze and I wander if she too is floating around somewhere. She said she would be. Five years on I can honestly say that my Mum’s diagnosis, her passing, and the traumatic events of those few months have shaped me into who I am today. My interests, my goals, my hobbies, the people I have in my life, and the people that I don’t have in my life, are all choices that I have made with the new perspective that that period in my life gave me. It’s taken time to adjust and I’m now on my way to accepting the person that her death turned me into and to being comfortable with this version of me. My mum gave me her strength, she gave me her determination and her love of life and people.

Even in the darkest of times there are twinkling lights, if you look hard enough. When it rains we must look for rainbows and when it’s dark we must look for stars.

Mum

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