Sunday 21 July 2019

Home Sick

When I think back to my childhood, at Custard Cottage, on Tower Hill, I remember it as an endless summer. Warm. Perhaps that warmth came from the long summer nights, spent in the garden, but I think it came from my Mum, and her love.

I vividly remember her hands. She was a natural carer. A nurturer. A healer. If we were poorly as little ones, her touch was hugely comforting. She would run her fingers through your hair to soothe you, kiss your wounds better, roll wet flannels on your forehead to cool you down. She used to give us "tickle backs" to calm us down - we would lie next to her and roll our t-shirts up and she would stroke our little backs with her fingers. She had this ability to make you feel calm, in the worst of circumstances. Over Mum’s last few weeks I cared for her at home, with Eric (Mum's Husband) and the rest of our wonderful family. I hope that my hands were able to make her feel that same calmness.

On 27 February 2019, we were told of Mum's diagnosis. She had Metastatic Lung Cancer with metastases in her liver, kidneys, spleen, adrenal glands and all through the vertebrae of her spine. I was driving home from work, when Eric phoned me to say that I needed to come straight to the hospital. I knew it was bad. On the way to the hospital, I prayed so hard, that she would be okay. I begged, I bargained, I pleaded to something, somebody, a greater good, that I would be a better person, that I would do anything, absolutey ANYTHING, if it meant Mum would be okay.

When I got to the hospital, my family were there and had already been told of the diagnosis. The consultant discussed it with me. I frantically tried to cement a plan in my mind. We would do chemotherpay, radiotherapy, we could get the BEST medical care that we possibly could. I would sell my house, I would sell everything I owned to raise the money to pay for private care. I spoke with the Consultant. "It isn't that kind of plan Hayley, I'm sorry." I couldn't get my head around this. Despite all the medical knowledge that I have, I just couldn't process that the plan was palliative. It didn't matter how much I begged, pleaded, bargained. It didn't matter how much money I could raise. It didn't matter how much I prayed. There was nothing I could do to keep her with us!

So, we began our journey. We went home. I set up a little Airbed at the bottom of Mum's bed and I slept there, every night for a month. With military precision, I arranged appointments, pharmacy runs, drug rounds, bath times. We borrowed a wheelchair from next door and a commode. For the first couple of weeks, we just kept going. Eric and I would sob in the kitchen whilst Mum was sleeping. Then we would keep going. I dealt with the Solicitors, with visitors, with home visits from the Hospice and other specialists. It became all consuming. I often have these pangs of guilt, because I wish I could have had more time, in that last month, to just be her daughter. So much of my time was spent washing, caring, bossing people around (guilty). But I know, if I had that time again, I wouldn't have relinquished any of it. She was my Mum and it was all I could do, to make her feel safe. To make her feel that she didn't need to worry about any of it. That I had everything under control.

The results came back from the biopsy. It was a small cell cancer that usually responds very well to chemotherpay. We celebrated. We would still lose her, but this woud give us 6-9 months. This mean't that Mum would be here when Mikey was born (my Brother's baby). It mean't we would all have time. Time with her. It would give her time too. Time to say her goodbyes. Time to try and somehow make peace with what was going to happen. She didn't want to leave us. She would wake up in the night. "I'm frightened Hay, I don't want to leave you guys, I don't want to leave my babies". It's the hardest thing I have ever had to do. To hold her and tell her that we were going to be just fine, that she didn't need to worry about us at all. That I would look after everybody and make sure everybody was okay.

I didn't leave the house during that time, not to train, not to see friends. I think I went for one meal out, but I phoned the house constantly to check that everything was okay. I had a really hard time really "being there" if I'm honest. My mind was so preoccupied thinking about how much I was missing her and I how I could be at home holding her hand instead. I felt like I had a lifetime to make memories with other people, but my time with my Mum was running out.

We went for her first chemotherapy session. I got her comfty on the big chair and I managed to squeeze onto the arm. We watched a movie on my laptop. I took a massive bag of snacks with us. There we were, snuggled up, surrounded by our snacks, as the chemotherapy drugs ran through. Mum was a little hazy that day, perhaps from the mix of medications she was taking to keep her pain at bay. During the chemotherapy she started calling Zues (her cat). "Come here Zues, come see your Mum!" I told her that Zues was not there. "Yes he is Hay, I saw you sneak him in here, in your handbag!" She then realised that this was absolutely ludicrous! We laughed and laughed. We laughed so hard, with tears rolling down our cheeks. Mum fell asleep. I stroked her hair. We spent hours like this over those weeks, in hospitals and at home. Her sleeping, me lying next to her holding her hand or stroking her hair. The oxygen ran out, whilst we were in the lift, on the way out of the Chemotherapy Centre. The spare canister was in the boot of my car. As soon as the lift doors opened, I ran as fast as I could, whilst pushing Mum in her wheelchair. Mum found it most amusing. She was singing the Benny Hill chase theme tune, whilst I was sprinting away.

We didn't have 6-9 months. We had a month. One month. The tumour in her chest, began compressing her Superior Vena Cava (SVC). Her heart began to fail. She decided that she didn't want to have a stent in her SVC. The wait for a bed was too long and she wanted to go home. She was so desperately short of breath by this point. She had no fight left.

So the plan changed.

From the minute she was diagnosed, she was adament that she wasn't going to die in a hospital. "You promise me, you'll get me home Hay, won't you?". We fought hard to get her home and to keep her there. My Aunties, Uncle, Cousins, Grandma, Brother, Eric - we all stayed under one roof. The dining room was a sea of Airbeds. We fought over who got the good pillows and who was having the hard lumpy one that nobody wanted. We had a hospital bed and other equipment delivered to the house. We set the lounge up like a hospital. The Shakespeare Hospice were a blessing, they set up the syringe drivers and came back daily to change them. My Aunty is a Paediatric Specialist Nurse and between us we took charge of her care. Although, we were hugely supported by the rest of the family.

We were a team. The very best team. Every morning we would see to Mum's personal care, whilst one of us made the breakfast. There would be somebody whizzing the hoover around, somebody else on a pharmacy run, whilst somebody else was doing the laundry. We set up a night-time rota, where we would do 1.5 hours each throughout the night, so that Mum was never alone. Although these last few days were heartbreakingly sad, they were also filled with love, laughter and silliness. Whilst Mum slept, we would talk openly about our favourite memories of her and play silly games like "Don't Show Keith Your Teeth" and the "Name a Fish That Starts and Ends in The Same Letter Game" (no Fern, Salmon doesn't)!! We listened to music and sung songs. Mum was singing, only a couple of days before she passed away. Singing and smiling, away in the clouds. She used to sing to us constantly when we were little. We had a blue guitar song book and she would strum the guitar and sing to us. She was magical.

They say that, when the chips are down you really find out who is there for you. I am blessed with the most incredible friends. Friends that visited. Friends that sent care packages in the post. Friends that travelled miles to attend Mum's funeral. My friend that met me for coffee with her own Mum, who also experienced the loss of a loved one through cancer. My friend that brought homemade lasagne and big pots of chilli con carne to the house, so that my family didn't have to cook. My friend that drove, just to park outside of the house, so I could run out for 10 minutes and sit in the car with her - sob, scream, shake, take a deep breath and then go back in. My friend that answered the phone at 0130 in the morning, when Mum passed away, to just listen to me cry, when I had no words left. These friends are more than friends. They are my family and I would be lost without them.

Mum lost her fight in the early hours of 29 March 2019, 24 hours before Mikey was born. I was holding her hand. She was surrounded by her family. I said the prayer that she used to say to us when we were children and kissed her on the forehead. I told her how much I loved her, how much we all loved her. Then she took one last breath and she was gone. We all slept. We were exhausted. The funeral directors came to collect her. I was hysyerical. I lay accross her. I didn't want them to take her body, although I knew she was gone. Our relationship had been so physical over the last month of her life. I wanted to keep her physically there with me. I begged Eric to not let them take her. Of course, they took her away. I cleaned. I cleaned for hours. The whole family cleaned. We put the house back together. The hospital bed and equipment was collected. I sorted her finances, the funeral arangements. I just kept going. Autopilot. It didn't feel real. It felt like I was living in an alternate universe. Everything felt blurry. Then the funeral happened. Then there was nothing.

My Mum was my best friend, without a shadow of a doubt. We would speak 3 times a day on the phone, about nothing in particular. She was the person I went to for everything. She knew everything about me. Everything. Since she passed away, I have felt a terrible home sickness that I cannot shake. My body aches. How can grief be such a physical pain? Mum was the constant in my topsy turvy life. I struggle on a Friday now. When I get into my car to drive home, I am bereft that I am no longer driving home to see her, to share a cup of tea and have a gossip. I would give anything in the world, ANYTHING, for 2 more minutes with her. Anything for an argument. Anything to hear her voice, smell her smell, hold her hand.

I’m certain that this is the first time that my Mum has left a party early! She was the life and soul of them all. Usually the orchestrator of any mischief going on. Her aura shone brighter than anybody else’s. A special soul, with the kindest of hearts. Never judgemental and always there to listen. She would have given you her last penny, if she thought you were in need. In the words of my Brother, Declan, she was our "star player, every season". She would have moved mountains for her children and we were FAR from angels! Over the years we caused her so much stress. But she was our lighthouse. Always guiding us home. Always taking us back in, no matter what we had done. She loved us fiercely and unconditional.

I will be forever grateful for my Mum. For her love. I am so lucky to have had a parent and a best friend like her. Everything she taught me has shaped the woman that I am. I am fiery, driven, tenacious, silly - all because her blood runs through my veins.

I miss you desperatley. I will never ever stop loving you, my beautiful Mummy.