Cookies and a cuppa

cookies and a cuppa

Hello, it’s me again!

I know I am dreadfully behind, and am wrecking blog etiquette by posting at random times, but please continue to bear with me. Balancing life, work and family with cancer can be a difficult task and time management has never been my strongest skill.

Over the next few blog posts, you are going to read about situations I’m not proud of. I will do things and say things that I deeply regret to some wonderfully kind people. I am letting you into a world where I feel out of control and in which I don’t always behave the way I would normally. Often my reactions and behaviour amaze even me. If 2 months ago, we had met in totally different circumstances, you would have met a different girl to who I seem to be now.

Right now, I’m insecure. I don’t crave sympathy but understanding. I hold on tight to friends I feel secure with, who have seen me through some difficult times before, and who I know will not judge me. I know that when a friend’s family member is critically ill, you may not understand what’s going on,  you may feel at loss of what to do or say, or you may feel awkward and want to pull away for fear of upsetting them. Please don’t. The support of my friends and family has been amazing. There are many different ways to be supportive, so get creative. Do whatever you do best.

Whilst we were at the hospital Saturday afternoon, my uncle Bobby took the shed door of it’s hinges and retrieved the keys from inside. We didn’t ask him to, but he saw a need and filled it. That same day, a friend text me offering to do a chocolate run for me so that I’d have something to nibble on at the hospital. Another friend offered to cover a youth group I run. When my friends meet up for a cuppa, if I can’t make it, they bring me a cupcake. Making meals is an effort, and I know it’s cliche, but actually I appreciate it when someone supplies me with food, whether they’ve invited me out for a meal or put one in my fridge. It’s one less thing for me to worry about.

Don’t ever feel like you’ve got nothing to give. Talk to your friend, find out what it they need. If they don’t need help immediately, It may help them to know that they have a bank of volunteers who can help them if they encounter a problem later, like needing someone to house sit for a delivery whilst they are at the hospital, or letting the dog out. It may be that they want someone to talk to and rant at; if you don’t know what to say, just listen. You don’t need to have the answers.

Be creative, be you, but most of all, be there. Walk with them.

 

 

Barefoot and Broken-hearted

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Saturday 7th June

My younger sister was stunned by the news, and after dropping us off home, went to work. Her boss had offered her the night off, but she wanted to work, she wanted to be normal.

My older sister followed her out, looking for a take-away; which left my Dad and I. We didn’t talk much until my Uncle Bobby rang. My Dad shared the news and then swore him to secrecy. He told him that the information would be staying within the inner circle, which was comprised of my Dad’s relatives, and 2 of my Mum’s cousins. As an after-thought, he added Donna and her husband.

After he’d said goodbye, I challenged him. I asked him if I could tell others, explained how important it was to me that other’s knew and why I wanted to live in Mum’s new diagnosis as a reality where my friend’s were aware and I could talk freely with others. He was furious. He accused me of being selfish, yelled at me for not thinking about him. He shouted that if my mum’s brother found out, he may visit her drunk, tell her about the tumours, and then she’d die and it’d be my fault. He stood over me, demanding to know what was wrong with me that I hadn’t cried all day. He shouted that I wasn’t normal, I was weird and unfeeling. Frightened, I grabbed my phone and ran out of the house.

Barefoot, I walked through the streets to the next village, feeling the harshness of the stony ground. It felt solid, real, and good; an oxymoron to myself. Tearfully, I called Lola who listened patiently as I ranted about my Dad, cried about my Mum, and stubbornly argued with her about my new plans for my future. I love Lola; she lives hundreds of miles away, but she is one of my closest friends.

I arrived at Donna’s, and let myself in to find her in the Kitchen. Hearing my voice, her husband abandoned Britain’s Got Talent and joined us. They’d clearly been waiting for me. They explained that my Dad rang them for advice following the argument. I listened to them both for a while as they talked about how my family would have to learn to settle our disagreements ourselves because we would continue to have them, especially whilst my mum was unwell. I realised then that they didn’t know the news.

I didn’t want to tell them. For a moment, I thought it could be my own little secret. I could be strong to them too. And then I remembered Donna standing with me over my mum’s bed the night before and I broke. I wasn’t strong. I told them the news, that my mum had something growing in her head. I could imagine it, a black mass getting bigger and bigger, squashing her brain and pushing against her skull. A small living creature reproducing and growing in my mum’s head, threatening to burst forth. I felt the disgust, fear, sadness and anger that I’d been struggling to hold back since the doctor first broke the news. I knew I wasn’t being ‘normal;’ I was freaking out as I described it to them, falling apart in their kitchen. But their kitchen was a safe place to fall apart.

I told them how intensely afraid I was that whilst I was here, she may be dying in a hospital bed, without me. We talked about my Dad, and at some points, I think I crossed into shouting. I was angry that he was controlling who I could tell, that he couldn’t understand my need for others to know. That my mum may die in the next 10 minutes, and most of my friend’s didn’t even know she was in the hospital.

We talked about my Dad. They knew about his co-dependent relationship with my Mum. They understood when I told them about the controlling behaviour. We discussed strategies for me to use in different situations, how I should use my voice, what I should say. They told me that I have 2 parents, even if 1 of them couldn’t talk to me at the moment and I had to consider what she’d want. But he’s my Dad, I love him and he’s having a really tough time with his wife dying, I don’t want to upset him, I want to wrap him up in bubble wrap and take care of him. Donna said that the controlling behaviour won’t ever stop, not unless I learnt to stand up to him, but I still don’t know if I can.

I sat, wrecked, talking in circle’s about how frightened and upset I was, and how unfair it was that my Dad had robbed me of my final moments with my mum by causing the argument last night.

I am thankful for Donna and her husband, and my friend Lola. None of them have a magic wand that can fix my family or make my mum better, but I don’t expect that from them. I’m thankful that in the middle of my mess, when I felt alone and frightened, they stood with me.

The final question

Hospital

Saturday 7th June

Saturday morning. My older half-sister, hearing the news from the night before, traveled across the country to be with us, and after only 4 hours sleep, we all bundled into the car and set off back to the hospital.

Asleep, my mum looked so fragile; it was hard to believe that less than 24 hours ago, her arms were holding me as I cried. Even when she stirred, she showed little grasp of where she was or what was going on. I wondered if her body came through this, if her mind would be left behind. Had I lost my mummy forever?

When we arrived we were told that my mum had had a CT scan on her brain, a report had been written and the doctor would see us soon. It was mid afternoon before we met the doctor, who informed us that there has been a mistake, a CT Scan had been booked for 9:30am but my mum didn’t go for it. Fire burned in my belly. I growled at the doctor who apologised, but stared me down. I was taken aback by my anger. Where did this come from?

After my mum’s CT scan, the doctor pulled us into his office to share the results. He called for the ward sister, a bubbly girl in her 20’s, to join us in the small but cozy room. She followed us in and chose the seat closest to my younger sister. I sat beside my Dad, ready to be his rock. As the doctor gave us the results of my mum’s scan, I became distracted by his name tag, bobbing from the lanyard around his neck. I wondered how my mum would feel if she woke up now, alone in her hospital bed; if she would think we had abandoned her. He was quick and to the point: my mum had at least 5 tumours in her brain, which were growing. He prescribed her steroids to slow down the growth but he could not stop them multiplying. He explained that if they were in her brain, they were in her blood stream which created a strong possibility that it had spread to other areas of her body. As he spoke the news got worse; I willed him to stop but he continued to inform us of how frail my mum had become and how that meant that at any point she may suffer cardiac arrest, and if she did, he would not resuscitate her. My Dad broke. Unable to hold us both together, I swapped seats with my older sister, who held him as he cried. I looked over to my younger sister, who had not stopped crying since she’d come in. She was engulfed by the ward sister’s arms, which held my sister together as she fell apart. I was jealous. I wanted to swap places, but I couldn’t. I had to be the strong one. I quickly text Donna, asking if I could visit her that evening, and then sat cool and collected, asking questions and gathering information. The doctor stared at me curiously, answering all my questions but seemingly, silently asking me why I was not upset. If only I could have told him. We talked about the next steps. He told us that it was not safe to tell my mum about the brain tumours, that information like that may kill her.

Then my Dad asked his final question: “In your professional opinion doc, how long does she have left?” The doctor paused before answering, “I don’t like that question, but I understand your need for an answer. I would say days or weeks. Possibly months, definitely not years. But you need to understand, it might also be minutes. Yesterday, a couple came in with a similar situation and I gave them a similar answer, and 10 minutes after they left, their family member died.”

The doctor promised to wait for us. We walked outside heavy with the news of my mum’s prognosis. My Dad made a decision on behalf of us all: we were to tell no-one. I tried to argue but my Dad turned on me, pleaded with me and told me that I was selfish. My Mum must not know and to ensure that, only he may tell close family and no-one else.

I wrestled with that. If I was going to be strong for my Dad, then I needed to be vulnerable with my friends. But that went against my Dad’s wishes and I didn’t want to cause a family argument, not then. I couldn’t be strong all the time, not on my own. I text my friend Lola, and asked her to keep my secret. I told her about the prognosis, and that I’d been sworn to secrecy. She told me to contend it, I needed to look after myself before my Dad. But I couldn’t, not here, not then.

The doctor came with us to tell my mum. He told her that she had had scan but the results were not normal so the hospital were sending them away for further analysis. My mum was barely awake and took none of it in. After the doctor had left, the nurse told us that he had finished his shift at 1pm, but had stayed on all afternoon to help us.

We drove home, my Dad’s final question still echoing in our minds.

The Care I Couldn’t Give

The Care I Couldn't Give

Friday 6th June

Youth Group. I wander into the office to check on the boys, and the phone rings. It’s my sister. “Rose, you’ve got to come home, there’s an ambulance on it’s way. It’s Mum. I need you.”

Convinced this was another of my Dad’s ’emergencies,’ I took a leisurely stroll home. Calming myself before facing him again. I opened the front door to find my sister sitting on the staircase, the mid point between my Dad who is talking animatedly on the phone and my Mum’s bedroom. She was frightened. She didn’t want to disturb Mum, neither did she want to be far away. I ran up to my parents’ bedroom, relieving my sister of lookout duty, to find my mum lying curled up in bed, groaning and moaning that her brain is going to burst out of her skull. I lay down beside her and talked to her, reassured her that we were getting help, that I’d stay with her until the ambulance arrived. She was going to be sick. She was going to be sick but she didn’t have the ability to pull herself up from the bed. I emptied a plastic box (the buckets were locked in the shed… along with the keys!), heaved her up, and titled her head forward over the box. I was afraid if I couldn’t keep hold of her she’d fall back down and choke on her own puke.

The ambulance arrived, and took my Mum with my Dad. Whilst they strapped her in, my sister and I took a head start to the hospital. I always thought in that situation, we would be two frantic girls speeding and swerving, running red lights in our hast to beat the ambulance to A+E. In surreal reality, we messed with CD’s and sang along, chatting about my sister’s holiday next week and what tonight may mean for it.

By the time the ambulance arrived at the hospital, my mum had lost the ability to reason, and was talking nonsense. The nurse asked her if she recognised my younger sister, and my mum babbled on about finance (she’s an accountant), the nurse asked if she knew where she was, similar answer. The next few hours were long and stressful, streams of nurses ran tests and observations, none of them able to explain what was happening to my mum. Even with my family, I felt alone. I was thankful for Donna, who text me periodically throughout the night.

Donna had continually impressed upon me since my mum’s terminal diagnosis, that if anything was to happen and I was scared, I could call her and she would come. At 2am, I was replying to one of Donna’s texts when my sister’s voice wavered as she said my mum’s name. I looked up as my Dad started calling desperately for a nurse. My mum’s face contorted demonically, and then her body followed, twisting in unnatural directions, becoming increasingly violent. She let out a deep moan as she lost control, her limbs thrashing out spasmodically. We were pushed out of the cubicle by a swarm of doctors and nurses. As my Dad and my sister held each other tight crying with fear, I called Donna.

I didn’t cry, I couldn’t cry. My Dad was barely holding himself together, I had to be strong for him. We were allowed to sit with my mum after the doctor had sedated her; he explained that the feeble flailing she was now doing was an after effect of the seizure, that the medication they had now given her would stop her from having another fit that night. 20 minutes later, my sister calls my name. I see the fear in my sister’s eyes as my mum’s feeble flails become violent attacks upon herself, as she emits that deep and painful moan. My sister cries my name, begging me to help. I look at them both, and feel desperately helpless. I shout at my sister, “What do you want me to do? I’m not magic!” before running out of the cubicle. The nurses, hearing the commotion, rush past me as I leave A+E, to stand outside alone, crying in the dark.

That’s where Donna finds me. After a few tearful minutes, my Dad joins us. My sister is desperately upset and afraid to leave my mum. I apologise over and over. He tells me that I have to be strong for him, because he’s barely holding himself together. I need to be his rock. So I breathe in, wipe away the tears and march back into A+E, relieving my sister to be comforted by my Dad. I stand over my Mum, asleep but still twitching from the seizure. Donna stands with me and suggests that I talk to my mum, but I can’t. She strokes my mum’s hair with a gentleness I wish I had. Donna shows my mum a love that I cannot, because I’ve got to be strong and showing any emotion or sensitivity might cause me to break.

An hour later, a doctor tells us that he believes the cancer has spread to her brain. He will organise for my mum to have a CT Scan in the morning but for now she will be transferred to an intensive observation ward, where the nurses can monitor her more closely. Afraid that this may be the last time we see my mum, we say our goodbyes and head home.

That night I had 4 hours sleep. I dreamed I was in hospital with my mum, but I wasn’t afraid or upset, because when ever something happened that I couldn’t handle, a friend took over, and I watched as they gave my mum the care I couldn’t give, and cried the tears I couldn’t cry.

 

photo credit: Bhumika.B via photopin cc

The Strong One

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Friday 6th June

It started with an argument.

The relationship between my Mum and Dad had gotten dire. Co-dependent. Mum was the cancer patient, Dad was her carer. He was becoming accomplished at transforming the smallest worry into being the biggest concern. Too big for my Mum or I to contend with, but Dad could handle it. I believed my Mum a very capable woman, much more capable than my Dad allowed her to be. It angered me to see my mum try to do something for herself, for my Dad to take over and speak to her like she was a child. Today he’d rang the hospital and called me home in a panic because my mum had forgotten the word for the shed, and momentarily forgetting how to eat. A long conversation with two lovely paramedics, whilst my Mum sobbed beside me on the couch, encouraged me that there was nothing substantially wrong with my Mum, it was most probably stress catching up with her.

I went back to work briefly, until my Dad called me again in a panic. He had spoken to the hospital, it was not good news. I raced home to be asked to babysit my mum whilst he popped out for her prescription. Nothing seemingly wrong, I pressed for news from the hospital. My Dad wouldn’t budge. So I pushed again. He pulled me into the Kitchen and he shouted at me and insulted me, and then told me the specialist nurse suspected that the cancer had travelled to my Mum’s brain. I demanded to know why he had kept this from me. My Dad angrily replied because he knew I couldn’t handle it, only he could be strong enough.

My mum had been sleeping upstairs, and woken by the argument wandered downstairs to find my Dad leaving, and me, a crying mess, standing alone in the living room. She asked me what was wrong but I couldn’t tell her. She couldn’t find out this way, and anyway the cancer travelling was only a suspicion. It wasn’t yet a fact. So I lied and told her I was worried about the youth group I was about to run, how I hadn’t prepared for it and how I was worried what Donna, the Church Pastor (my boss), would say. She hugged me tight and then rang Donna, told her that I was a crying mess and my worries about youth group that evening. She passed me the phone, and I sobbed my apologies. Donna assured me that it was okay, we would piece it together.

When I got there, Donna asked me to come and help her get stuff out from the car. She used the opportunity to ask me what had really happened, she knew the phone call had been a cover-up. We stood in the car park and she listened as I expressed my frustration with my Dad, and then we walked into youth group as if nothing had happened.

In my mind, my Mum was the sick one, the one we needed to care for. But in reality, she was the strong one, holding herself together and me too. I didn’t know how quickly that would change.

Tick Tock

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Time is a strange thing. Sometime’s time seems to stretch on as you wait in a hospital for the night to pass, or for the scan results that will decide your future as a family. Sometime’s time seems to run away from you, as you try to fit work around hospital visits, or try to create and enjoy each precious moment you have left.

Since my first post, things have progressed very quickly. I have met streams of doctors, argued with nurses, cried with friends, and become one of the hospital’s cafe most loyal customers. I have spent the night in hospital and watched as my mum bounced between sleeping peacefully and contorting painfully as if fighting off some invisible attacker.

Please bear with me in the next few post as I attempt to catch you up on the past week and the beautiful people who have walked with me through it.

For now, I’m going to spend the next few hours eating Ben and Jerry’s, watching Mamma Mia and enjoying this precious moment with my Mum.

Hello, is it me you’re looking for?

Come travel with me

Hello, and welcome to my blog.

I want to begin by telling you my name but I don’t think that would be a great idea. I’m going to share with you some of the most wonderful and funny moments of my life, but also some of the saddest and most painful. You may cry with laughter, you may cry because you can relate.

For now, let’s call me Rose.

Last Thursday, I sat on a squishy sofa examining a wall display crammed with old cancer information leaflets, in a clinically white room, as a nurse explained to us that my mum is probably going to die. She told us that my mum has secondary small cell lung cancer that has spread to the lymph glands under her right arm, and there’s a possibility it has spread to her bones. They can control it, but they cannot cure it.

I have some amazing friends who, after hearing the news, are trying their best to support me and I love them dearly for that. However, I see some of them struggle to understand what’s going on for me, how I feel, what helps and what doesn’t help. It made me want to write a blog.

A couple of years ago, before my mum’s first cancer diagnosis, the father of a lady I worked with was given a terminal diagnosis. I had no idea what to do with her, I had so many questions. Should I ask her how she is doing? Should I ask how her father is doing? Would that make her cry? Would making her cry be a bad thing? What would I do if she cried? Would it be better if I just ignored the whole subject? I was clueless.

Everybody’s different and everybody will react differently to a family member receiving a terminal cancer diagnosis. This blog won’t tell you what your friend is thinking, but it may give you an idea as to some of the feelings, thoughts and situations that your friend may encounter and hopefully some ideas and tips in how to help and support them.

If you’re parent or family member is facing a terminal diagnosis, know that you’re not alone.

A terminal diagnosis may determine the end destination, but we get to choose the journey. Come travel with me.